An Unexpected Trip to Holland

New Blog

2012-01-05T13:46:00.001-08:00

I've decided to take a picture for each day of 2012 and blog about it. The pictures will be a reflection of what is going on in my life on that particular day. If you'd like to follow along on that journey, just click HERE

An Example

2011-11-17T14:52:00.001-08:00

We’ve always said that when Taylor runs, she lopes like a camel. Her sister Brandy sent me the perfect video to show just how Taylor runs.

Please enjoy! I know I’ve laughed & laughed & I’m laughing now as I type this.

Sometimes It’s Hard

2011-10-04T13:02:00.001-07:00

Sometimes it is hard having an older “child” with special needs. I will admit that there are times when I wish I could turn back the clock. Granted, they are few and far between, but if I’m honest, I do have them.

There are things that are easier when she was smaller. She still has the mind of a toddler in a 6 foot tall frame. She loves to swing, but the trend today is to take out all the old style swings and put in big play structures. I watch her struggle to figure out how to play in a world that is too small for her. It breaks my heart.

When we would go to the grocery store, so many would stop and say how cute she is. Now, it’s mostly stares of disgust because she still drools.

No, it’s not all bad. We live in a small town and shop at the same Safeway. All of the people who work there know and love Taylor. There are cashiers that tell me she lights up their day with her smile when she comes through their line. I love those people.

I’m not trying to write a whiney post but these are just things that are on my heart lately. I used to belong to an online support group for Trisomy 9p. I eventually stopped posting and left the group because there was just no connection with the other parents for me.

Taylor is one of the oldest, still living, T9p kids. She also has a lot of medical issues. She was also one of the most profoundly developmentally delayed. The parents of the younger kids didn’t want to think of their kids being as affected as Taylor. I understand that perfectly. They didn’t want to hear about seizures & cancer.

Another mother who’s daughter is Taylor’s age also left the group. She felt the same. The other big issue is school and/or programs. Taylor loved school but she can only go until she turned 21. Then they graduate them. Most of her class went on to work programs. That’s not an option for Taylor. There are really no options for the profoundly affected “kids”.

Right now, Taylor is bored. She wants so badly to DO something but because we run a business from home, it’s not possible. She does get her respite care but right now, that’s a problem. Not because of her care providers…they are awesome people. But because of the brokerage firm that handles money & paperwork. I’m switching firms so hopefully, this will resolve the problems.

I know this sounds like a complaint blog and I apologize. I just needed to get it out. I guess I just want to help other parents because I’ve been through so much in the past 22 years. I just never know if the parents want to hear what I have to say.

Eh, I definitely sound whiney now. I’ll take a cue from my happy-go-lucky child and just smile

An older picture, but one of my favorites. She’s so stinkin’ cute!

An Update on the Mom

2011-09-26T13:13:00.001-07:00

This picture is an older one, but it brought back some awesome memories and I needed that. *laughs*

Okay, so normally, I don’t post about myself unless it relates to Taylor, but I suppose I need to change that up a little. What affects me, affects her.

So, last week I spent some time in the hospital for pneumonia. Needless to say, I’m still feeling like crap but trying to do that at home. I had to make a repeat visit to the ER on Friday for IV steroids, but got to come home.

Is it just me or is it all us special needs moms…I tend to take my health way less seriously than I do Taylor’s and that isn’t really the right way to be. If I’m not healthy, I can’t take care of her but sometimes that just doesn’t translate into practicality. Please tell me I’m not the only one! *laughs*

Taylor went and spent some time with her care providers while I was inpatient. She enjoyed that. They have a dog. See…Taylor is the ‘dog whisperer”.

This is 1 of the pics she sent via text to my phone while I was in the hospital.

Apparently Taylor doesn’t like to sleep at their house. She’s too afraid of missing something. She is up and down all night. When she comes home, she ends up taking a several hour nap and/or going to bed at 7pm then waking up around 10am. Either way, it works for us and they don’t seem to mind. I love these people!!!

As a side note, I hate, hate, hate the brokerage service that we have to deal with for Taylor to get respite. They are being *&^%$heads. But I’m changing firms, so hopefully, it will work out.

Throwing Tub Toys & a New Haircut

2011-09-16T12:55:00.001-07:00

Taylor got a new haircut yesterday. I think she looks cute. Also, no more struggling with her to put it in a ponytail first thing in the morning so she doesn’t have food in it. *yuck*

I realize that it’s a little odd to take pictures of a new haircut while the person is sitting in the bathroom floor. However, this is Taylor’s “office”. Every day, she takes her work equipment, aka bucket of tub toys & mp3 player, and heads off to work.

She then proceeds to throw said toys over the shower curtain and into the tub. That is the sound we get to hear all day…plastic toys hitting and bouncing all around the cast iron tub. Keep in mind the fact that this is a 1 bathroom house. So anytime we need to use the bathroom, we have to wait while she gathers up her work materials to take with her. You better not wait until you really have to go in this house.

Taylor takes her “work” very seriously.

It wouldn’t be a good post, if I didn’t end it with a smiling Taylor picture.

Respite Care Rocks!

2011-09-07T21:36:00.001-07:00

Taylor last summer. A time out chair big enough for her *laughs*

Since Taylor’s sister got married and had to move, we’ve been without respite care. It’s hard to find someone you trust completely to keep your child overnight.

Luckily, we were able to find those people. One of the nurses at the infusion center Taylor has been going to since 2007 offered to do it. She loves Taylor & Taylor loves her. She thought it would be good for her kids to be exposed to someone like Taylor.

So, for the past several months, Taylor has been stuck at home day in and day out. Since we run a 9 to 5 business from our home, it’s hard for me to get out and do things with her. So she has been bored and boy can you tell.

She would just meander through the house with her bucket of tub toys…trying to decide if she wanted to go throw them over the shower curtain and into the tub ( a favorite loud past time) or take her mp3 player out and lay on the swing. Another loud past time if you have ever heard Taylor sing. Think 100 cats being run over by a car simultaneously.

She would also make 500 trips to the bathroom every night to make sure nothing fun was going on in the evening without her. Anyway, last week, all the respite paperwork was done and the family came to pick Taylor up for 3days/2 nights. I wanted to run around the house yelling “free at last, free at last, thank God Almighty, I’m free at last!!!!” (Didn’t…but wanted to. Taylor probably would have done that if she could talk)

Apparently she had a blast. She attached herself to their 10 year old daughter Ally, who enjoyed the attention and gave one of their dogs more love than it probably ever wanted. She came back a whole new girl. She walked in the door, had a snack, then took a 3 hour nap. Got up to eat dinner and then went back to bed until 10am the next morning.

She has been happy and good every day since then. No getting up a thousand times a night either. That little break from home did that child wonders. People should never underestimate the awesomeness of respite…for both the parents & the child.

One of These Feet is Not Like the Other…

2011-08-26T16:06:00.001-07:00

So, this is the “infamous” foot that started us down the road to diagnosing the CML. We’ve been through 16 days of IV antibiotics, bone scans, ultrasounds, dozens of x-rays, & several different doctor specialties telling us they didn’t know what it was.

Everyone agreed that this had nothing to do with the CML. So we were just treating her pain when she had some. This morning, she woke up in a lot of pain. I tried the Ibuprofen first…nothing. I called the doctor and then gave her stronger pain meds and she became more comfortable but everyone felt she needed to be seen.

However, Taylor’s doctor isn’t in on Fridays. Also the only appointment they had was with the NP. Now I love this office. All the nurses love Taylor so I know they have her best interest at heart. The nurse on the phone said, “Dawn, I don’t want to offend you, but it really wouldn’t be fair to have the NP see Taylor because she is just too complex and she’ll scare the crap out of the NP”.

Okay, I’m so not offended by that. I totally get it and I just had to laugh. To me, that sentence was funny. Of course, that could just be twisted sense of humor.

So off we go to the Urgent Care because they know Taylor just as well. (I used to have this secret fear of being labeled a drug-seeker because we ended up in the Urgent Care so much.) The doctor actually laughed at me when I told him that.

Anyway…I’ll stop rambling. I’ve written all of that to just say this. Her last x-ray in May showed no bone abnormality. Today the doctor said that the leukemia can weaken bone so he wanted an x-ray. Lo and behold, she has a slight hairline fracture of the ankle.

Seriously? The treatment is an ankle splint that she does not want to leave on. We don’t want to put her in a cast because then she would lose her sacred bath time. That girl loves her baths.

I’m not upset right now but I’m sure at some point it’s going to hit me and I’m going to be upset that she has to deal with all of this. I will end this entry with a happy Taylor picture.

Taylor at her sister’s house (before she moved). She is singing this song from Barney.

Happy Birthday Sweet Girl!

2011-08-18T12:48:00.001-07:00

Taylor is 22 years old today! It’s hard to believe that there was a time when we were told she would never see toddlerhood let alone her twenties. Of course, she is a 22 year old “toddler” so I guess it all evens out. *laughs*

I see each birthday now as a gift. I feel so blessed to see her smiling face each & every morning. Well, the mornings when she decides to stay up until 3am while making 5,000 trips to the bathroom are ones when I’d prefer to see that smile a little later than 7am.

So, what do you get a girl who has everything she wants? You give her the things she considers to be the best stuff on the planet.

1 car magazine – $6.00

1 caffeine free diet coke – $1.69

2 packages of Gummi Worms – $3.00

3 Mylar Spongebob balloons – $10.00

1 huge grin & a drool enhanced hug & kiss =

PRICELESS!!!

Pictures

2011-07-30T15:06:00.001-07:00

Here are some pictures of Taylor from her sister’s wedding in May. She had a blast. Please excuse any pictures of me. My face looks funny because I was constantly trying not to cry…both from happiness & sadness.

Happiness that my family was gaining an awesome son-in-law. Sadness because I knew he was being stationed way back in Georgia, at Fort Stewart. I miss them a great deal. No one to call me Nana in person anymore.

Getting ready to walk down the aisle. Taylor held her flower up to her forehead. (I have no idea why though I wish she could have told me the reason. *laughs*)

She’s getting her “groove thang” on with her sister.

Trying to steal her sister’s new husband. Taylor started trying to steal boyfriends the moment her sisters started dating. She’s evil that way.

Hope you enjoyed the pictures. There is nothing like looking at Taylor’s smile to brighten my day. I hope she does the same for everyone else.

Long Overdue

2011-07-15T16:30:00.001-07:00

First, I want to thank everyone for all their kind words and support. They meant the world to me. I don’t know why I seem so averse to updating this blog. I need to get back to regular blogging.

Yes, things have been busy but I need to make the time…at least for my emotional health.

Taylor is doing very well. She has some issues, but then she’s always had at least one issue all the time, so it’s nothing big. She is still her smiley, happy self.

Since her sister got married and moved back to GA…see, it has been awhile. I’ll have to post pictures. Taylor & I walked her down the aisle. She married a wonderful Army MP when he came back from Korea in May. They had 21 days here before they had to pack up and move to Ft. Stewart, GA. He’s scheduled to deploy to Afghanistan this coming January.

I promise I’ll go back to writing regularly. If not, Jaime can bug me. *laughs* I will leave you with a video of our 4th of July light show. Yes, The Bossman loves his lights. Wait until you see video of this coming Christmas. Visit our Vimeo site if you want to see the rest of the songs.

Summertime Medley - 4th of July Show 2011 from Cascade Christmas Lights on Vimeo.

Courage

2011-06-01T09:52:00.001-07:00

I’ve finally found the courage to write this entry. I struggled with writing it because I was worried about what some might think & I finally let that go.

I’m confident in the decisions I’ve made & I can’t let what others think scare me.

Taylor was diagnosed with chronic myeloid leukemia. While this type of cancer is more common in older adults, it can happen at any age. The oncologist believes Taylor developed this type because it involves issues with the #9 chromosome and Taylor has Trisomy 9p.

We are not exactly sure what stage Taylor has because we are not going to do a bone marrow biopsy. The reason for not doing one is that we are not going to seek treatment.

I’m sure there will be people shocked by that. I follow the blogs of some DS children being treated for leukemia. However, we don’t feel it’s in Taylor’s best interest to put her through chemotherapy. I’ll admit to being scared when I shared that decision with the oncologist but he was surprisingly understanding & sympathetic. He actually agreed with our decision.

Taylor has many other health problems and we’ve been told that she’s already outlived the expectations of all her doctors. I want whatever time Taylor has left to be happy. All her doctors believe that the side effects from the chemo outweigh the benefits of putting her through the treatments.

Believe me when I say that there was a lot of thought and research that went into the decision that we made. Right now, we are treating any symptoms that might make Taylor uncomfortable and her doctors are on board with that.

I know in my heart that we’ve made the right decision and the best decision for Taylor. Of course there is that part of me that wants to do whatever it takes to keep Taylor here with me. But how selfish would I be to subject Taylor to being sick & unhappy just for my benefit?

I’m sure there will be people that think I’m doing the wrong thing. I would ask those people to keep in mind that they don’t know Taylor’s medical history. They need to understand that the decision we’ve made is made with the love we have for Taylor. I love that girl more than I could ever put into words but I have to do what’s best for her…not what’s best for me.

Right now, we are focused on keeping Taylor happy & comfortable. Taylor is surrounded by the people and things that make her happy & fulfilled. She has her diet coke, car magazines, computer filled with Barney videos, grapes, & her TV . Sounds like the perfect life to me.

Besides…Taylor is stubborn enough to outlive us all despite any diagnosis.

Life At This Moment

2011-05-10T22:03:00.001-07:00

I’ve been gone for quite awhile. Life just got busy. Of course, then unexpected things started to happen.

As you can see from the picture, Taylor’s port is accessed. She just spent 16 days getting daily infusions of IV antibiotics. We just finished Sunday. She was being treated for a staph infection of her foot/leg.

Unfortunately, while we noticed some improvement initially, her foot and leg are now right back to being big & swollen.

Then Taylor’s blood work started coming back abnormal and the “C” word was thrown out. That’s where we are now. Running tests for cancer. Tomorrow morning, we have a bone scan.

Taylor has been very lethargic and clingy lately. She follows me around the house. Normally, she always does her own thing, plays her own way. Now, I have an intense shadow. You can tell she doesn’t feel well, but it’s frustrating that she can’t tell us what exactly she is feeling.

That’s where I’m at right now. Trying to start the thought process of whether we go with chemo/radiation option, if the tests confirm what the doctor suspects, or to not put her through those things.

I’d like to not have to think about any of that. I’d like to be able to wait until we know for sure. But then the doctor reminds me, depending on the results, we may not have a lot of time to make a decision, so I need to start thinking about it now.

How do you make those decisions? Why do you have to make those decisions? At least I can always count on this smiley face to help me make whatever decision needs to be made.

The “Bossman” told me I needed to update this blog…to get my feelings out. As usual, he was right. It is cathartic to put things out there in writing, even if I haven’t quite dealt with all the emotions yet.

**After posting this, I happened to look at the pictures, and she definitely looks unwell. First time I’ve noticed how pale she is right now.**

Feeling Like an Outsider Sometimes

2011-03-23T14:08:00.001-07:00

I haven’t been blogging about Taylor much lately. Part of it is because the business has kept us hopping for the past several months. In this economy, I’m not complaining. It also allowed The Bossman and me to take a much needed 5 day vacation to the Oregon Coast…Seaside to be exact. Just he and I. It was bliss.

The above picture was taken on one of our many drives. I’m already to go back. Taylor actually stayed with her sister so that was great.

Okay, so on to why my title is what it is. Somehow I ended up following and reading a lot of blogs that involved children with Down’s Syndrome. I think it’s because it’s the closet thing I can get to what Taylor has. However, the only thing that really puts her in that group is an extra chromosome. Taylor’s just happens to be #9.

Trisomy 9p is one of the rare chromosome syndromes. So it’s not like I’m going to find a lot of bloggers with a child with the same diagnosis. Then there is Taylor’s age. She’s 21 years old. She wasn’t supposed to live this long and I’m thankful every day that she’s here. Yes were are dealing with new and serious health issues, but I’ve had her for 21 years.

I’ve tried to help out the blogs I follow with things I’ve learned in the long time I’ve been mom to a special needs child. Sometimes I think I come across as a “know-it-all” and I am not.

But I also realize that things change so quickly in the special needs world. What was once standard procedure when Taylor was little is now considered outdated.

Now I’m running into issues that never crossed my mind when Taylor was little. The fact that my being her mother did not automatically let me make her medical and life decisions when she turned 18 was a surprise to me. Spending over $1300 just for a court to say that my profoundly, developmentally disabled child was not capable of caring for herself therefore needed a legal guardian & that I needed to be approved for that role, shocked me.

After 21 years of caring & loving my child, I now needed approval from the state? Yep, you do.

I would give anything if I’d had access to computers & blogs when Taylor was little. But that was in the “old days”. *laughs* Please don’t think I feel sorry for myself or anything. I just needed to get this out. I think it was what was keeping me from blogging regularly and I miss that.

Also, if I follow your blog, please know that I always read them. I may comment very infrequently but when I do, it’s because I feel like I can help or at least add to the dialogue. I want my comments to be more than “oh, that’s a cute pic”.

I think I’m rambling now. That’s what happens when you just start typing and letting all your pent up thoughts just blurt out with typed words.

And just because she’s cute, I’ll leave you with a picture of the reason I do blog…

The Puppy Whisperer

2011-02-09T10:24:00.001-08:00

I just thought I would share with you Taylor’s first love. She’s always had a deep love for animals but most especially dogs.

This picture was taken at her sister’s house and Taylor treats that puppy like a baby. The puppy, Jasper, actually belongs to Brandy’s boyfriend who is stationed in Korea but of course, Brandy is keeping it for him.

However, I don’t think he’ll have a puppy when he gets home in May. Jasper thinks he belongs to Taylor. Jasper’s tail wags 5000 mph when he see Taylor.

I truly believe that 99.9% percent of dogs sense something about special needs kids. I’ve seen Taylor be able to pet and love on dogs that wouldn’t let another soul touch them.

There are some things health wise that are going on with TayTay, but I honestly just needed to write a “feel good” post today.

Nothing is more heart-warming than this picture of Taylor & Jasper. You can just see the love in both of their eyes.

Happiness is a girl & a puppy! *smiles*

So Much to Say…

2011-01-22T23:00:00.001-08:00

I could say that I haven’t written since November because life has been super busy and that wouldn’t be a lie. However, if I want to be perfectly honest, I haven’t written because when it comes to Taylor, I just haven’t a lot of good news.

Christmas was hectic because we decided to do this to our house this year. It was great fun and next year will be even bigger. Business has been non-stop since August which is the reason we could afford to decorate our house that way.

Taylor had to have another VNS surgery a couple of weeks ago. At her pre-op appointment, we found out that Taylor only had 1 working vocal chord. Okay, since we could still hear her sweet voice, it was okay. The surgeon was worried because of the 2 incisions she had to have, 1 was in her neck and they had to thread new wires in-between her jugular vein and her carotid artery. Apparently very tricky stuff that required 2 surgeons.

Taylor seemed to come through the surgery better then they thought. We had planned to spend the night, but they let her come home. However, her voice is gone. What you get when she talks is a hoarse whisper. No more cute Taylor voice. Her surgeon seems very concerned.

It’s not like Taylor actually talked “real” words but she had a voice. Now she doesn’t. I kept trying to tell myself it’s okay because she came through the surgery when they were scared she wouldn’t. But I think I’m in denial.

I don’t want to only hear this hoarse whisper from now on. I want her voice back. We asked if her voice would get better, but it seems the odds are not in our favor. Furthermore, there could be a breathing issue down the road.

I would probably still not have written here tonight but The Bossman told me I needed to and as usual, he was right. I can’t keep my head in the sand forever. I need to just let it go and move on. At least, right now, she’s home and happy. That is what’s important…right?

Computer Avoidance

2010-11-17T19:42:00.001-08:00

I can’t believe I’ve gone this long without blogging. The only excuse I have is that things have been completely hectic and busy around here.

The business has been non-stop since October with several computers coming in every day. So between doing tech support over the phone and dealing with customers dropping off or picking up, the last thing I want to do at night is be on my computer.

Also, after many years of dreaming about it, “The Bossman” is finally realizing his dream of putting up 10,000+ Christmas lights that will be computer animated. Needless to say, in between customers I’ve been stringing strands of lights together or painting outdoor decorations. Click here if you’d like to check out our progress. We only have 1 week to go before show time.

On a pain in the ass note, Taylor visited the neurologist. She started having drop seizures again…really big ones. Well, today, we found out why. Her VNS implant is not working! If you don’t know of our VNS implant troubles, you can read about them here.

So that means another surgery and probably soon. As her neurologist put it…”that’s a bunch of crap”. Her neurologist is such a neat lady. She’s funny too. I love that.

Well, that’s what has been going on around here. Doesn’t look like things plan to slow down anytime soon. I do apologize for ignoring all my blogging friends and not commenting on your posts. I’ve just been practicing computer avoidance for over a month.

There Are Still Some “Firsts”.

2010-09-29T22:13:00.001-07:00

I had to sneak this picture with my phone so she wouldn’t stop playing.

I spent part of the afternoon, sitting at my desk, looking out the big picture window, watching Taylor play on the deck. i realize that doesn’t sound all that entertaining, but for me, it was.

You see, Taylor doesn’t “play”. She has toys and stuff, she just never really plays with them. About the only toy she really plays with are balls.

But today, Taylor took her Cabbage Patch dolls and a stuffed puppy and played with them. She sat them in chairs around the outside table and put toys on the table for them. She had several of her magazines placed in front of where “everyone” was sitting.

Taylor playing today would be the equivalent of a baby taking their first steps in how emotional it was for me. At 21 years old, it looked like my daughter used her imagination for the first time. It was amazing.

And yes…I cried.

Anti-PC Post Ahead…Proceed with Caution

2010-09-23T16:10:00.001-07:00

I realize that my voice is going to be in the extreme minority here but I feel like I need to say something.

There are a lot of things that our lawmakers in Washington need to address…namely the fact that millions are out of work. Our economy is still on a downward spiral. Small business owners are being taxed like crazy. I can vouch for the last one first hand.

Look, as the mother of a profoundly, developmentally disabled daughter, I understand the power behind words. However, right now, taking the words “mentally retarded” out of government documents seems like a waste of Washington’s time. Click here to read the story.

There are too many families who don’t have enough food, enough money to pay their bills or house payments. Shouldn’t we concentrate on those issues right now?

I realize that I’ve probably offended most, if not all, parents of special needs kids. However, I just think there is a time for everything and maybe this wasn’t the right time. We are so politically correct about everything…even to the point where sometimes I don’t even know what to “call” my child when explaining her issues to others. You can’t say disabled, you have to say “differently-abled”. Handicapped becomes “handi-capable”.

These are just my personal views and I definitely don’t expect everyone to have the same. I just feel that sometimes, people are too scared of offending someone with a differing viewpoint. I almost didn’t post this because I was worried about what those that read here would think. But then I realized that it’s my blog & if I can’t voice my feelings here, where can I?

I welcome all differing opinions to comment here. I just ask that you be respectful. Dialogue & debate (with manners) are always appreciated.

Mothers Lie

2010-09-22T16:35:00.001-07:00

By Lori Borgman

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more.
She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.
She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule.

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions.

She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.
Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palate that didn't close.

The doctor's words took your breath away.
It was just like the time at recess in the fourth grade when you didn't see the kick ball coming, and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled him for a checkup, and crashed head first into a brick wall as you bore the brunt of devastating news.

It didn't seem possible.
That didn't run in your family.

Could this really be happening in your lifetime?
There's no such thing as a perfect body.

Everybody will bear something at some time or another.
Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery.

Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it.
Sometimes you mothers scare me.
How you lift that kid in and out of the wheelchair twenty times a day.

How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy columns like this one-saluting you, painting you as hero and saint, when you know you're ordinary.

You snap, you bark, you bite.
You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling,"Choose me, God. Choose me! I've got what it takes.

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack.

You've developed the strength of the draft horse while holding onto the delicacy of a daffodil.

You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.
You are the mother, advocate and protector of a child with a disability.

You're a neighbor, a friend, a woman I pass at church and my sister-in-law.

You're a wonder.

This is something I ran across and just had to repost. Sometimes you come across things that just beg to be shared. This, to me, is one of those things.

Summer Fun Video

2010-09-13T11:39:00.001-07:00

I realize that this post can’t compete with Brandy’s sister post, but I’m hoping that some video of Taylor, Brandy, & the grandkids will at least come close.

I have to thank The Bossman for taking the time to make my video look way better than it actually is…gotta love editing.

Sisters

2010-09-08T19:27:00.001-07:00

Mom gave me an idea to write a blog on Taylor’s blog from the sister’s point of view. I thought it was wonderful the hard part is figuring out where to start. So I will kind of start with the beginning and see how it goes.

I remember Taylor’s nursery like I was just there, and I was only 5 when she was born and I can tell you where her brown crib was and the beautiful silk off white bedding she had. I guess I was excited about her!!

When she was born I remember me and my older sis running in there to get her up and make her pink bottles, they were pink because she had to have medicine in them, looked like strawberry milk. Growing up with Taylor was a wonderful experience, I don’t remember all those life threatening surgeries or choices that my mom had to go through at least not till we got way older like now.

I remember trying to get Taylor to a new accomplishment, for example I was the first to make Taylor laugh and I remember every detail and can picture that moment in my head. So me and my older sis always wanted to get her to do something else, whether it was laughing, talking, standing, or walking we just couldn’t wait to get her there. I do remember teaching her to say “boobies”, I was a good sister but I wasn’t perfect. I also remember Taylor loved to stand on the furniture facing the back and we would duck down on the other side and play with her but let me tell you if she got your hair that was the end of it..ouch!

My main point with this one is being the sibling of a special needs child like Taylor we are the lucky ones, growing up with them we get to have all the fun and none of the worries like the parents do. I can’t be 100% sure but I can’t recall a time that I was ever jealous of Taylor and the attention she got, either it’s that I was so darn good or I was raised right!

I hope you enjoyed this sister blog and look out for my next one, I already have what I will write in mind!

Thanks, from the sister of Taylor

Come to the Dark Side

2010-08-23T15:18:00.001-07:00

I don’t know about other parents of special needs or medically fragile kids, but I use humor to cope with the many ups and down that this life consists of.

It’s what I use to get through every life-altering event that Taylor has gone through since the very beginning of her life. We called her “stick baby” because she was almost 29 inches long but only weighed in at a whopping 5lbs when she was 2 weeks old. Just picture a stick figure drawing & that’s what Taylor looked like.

When she was older and we could see that her skull was a little misshapen around her forehead, we called her “Frankenbaby”….with absolute love.

Because she has seizures & loves salads, we started ordering her a “seizure salad” (think Caesar).

When she turned 21 last week, I told some people that I was going to take Taylor to a bar and order her a Jack & Coke just so I could see the bartender/patron’s faces when she paid using money from her Blue’s Clues purse.

Now, you might be wondering where I’m going with all of this. Apparently, some people are offended by the above things. I’ve also met some parents of special needs kids that are so caught up in their child’s diagnosis that they forget there’s actually a child attached to whatever condition/syndrome it is.

I don’t begrudge anyone whatever it takes for them to cope. If you don’t get my humor, that’s okay. If you find it offensive fine too. Just don’t tell me or try to make me feel guilty about it. I could make myself cry every day if I just sat and thought about all of Taylor’s health issues.

I don’t want to do that for many reasons. The main one is that it doesn’t reflect who Taylor is. Taylor is happy. She loves life. She laughs a lot, hugs a lot, gets joy out of caffeine-free Diet Coke so why am I going to walk around with the “oh woe is me” face?

When I was talking to The Bossman about this post he said that police & first responders use humor to cope with all the horrors that they deal with. The Bossman used to be a cop so he would know. I know doctors that have that same kind of humor. I’ve shared many a dark humorous moment with some of Taylor’s doctors. If we heard even a tenth of the coping humor used by police, doctors, EMTs, and the like, I’m sure we would all be properly horrified. (I’d probably laugh with them because I’m bad like that.)

I’m sure this sounds like a rant and I don’t mean it to be. Well, maybe I do just a little bit. I just don’t understand why these mothers that email me are so offended about how I talk about my child and deal with the stress. If sitting around all day, constantly uptight and only defining your child by their syndrome is how you handle stress, well okay. I’m not going to harass you about it. I may shake my head at what you write and sigh, but that’s the extent. I’m not going to email you and tell you that you are wrong.

I would invite you to join me on the dark side and make fun of your situation. While some think I’m making fun of Taylor, I am not. Fortunately for me, I think she has an awesome sense of humor and if she understood what I was saying, she’d laugh right along with me.

For those mom & dads of the specialty kids, what coping mechanism do you use? I know I’m not alone out here on the dark side. *laughs*

Happy 21st Birthday Taylor Marie!!!

2010-08-18T08:47:00.001-07:00

Taylor helping decorate her cake @ preschool for her 3rd birthday.

Wow!!! It’s hard to believe my baby is 21 years old. While she doesn’t act 21, I’m amazed at how far she has come.

She exceeded the doctors’ expectation of how long she would be here. How many times were we told she wouldn’t live past a year old? How many times were we told that this “event” is probably the end?

She doesn’t know she isn’t supposed to be here. She’s stubborn. While that stubbornness can be difficult when dealing with a 6ft. tall toddler…that same stubbornness has made her determined to live her life to the fullest.

So keep on being stubbornness Taylor!!! We love you like crazy and Mommy needs you to hang around!

HAPPY, HAPPY BIRTHDAY PRINCESS TAYLOR!!!

Reflections on the Past 20+ Years

2010-08-16T14:43:00.001-07:00

Taylor’s 21st birthday is fast approaching…just a few more days. Her upcoming birthday has had me reflecting on the last 21 years.

We went from a baby we thought was perfectly healthy to a baby who had less than a year to live. Obviously, she showed the doctors never to underestimate her desire to live in this world. Though we are in an uncertain time concerning Taylor’s health, her seizure activity continues to take more & more of her abilities, I will never discount Taylor’s will to live.

I would love to say that the past month has been fantastic but it hasn’t been. Taylor has more and more days that are one seizure after another. Those days make we want to just curl up, hang on to her, and cry. But we don’t do that because no matter how many seizures, Taylor smiles. At the end of the day, Taylor is happy and really, that’s all any parent could ever hope for.

I read the blog of a mother who recently lost her daughter. Her daughter was just a few years older than Taylor. The grace & beauty with which she is handling her grief is what I would strive to do. Click here if you want to read her blog firsthand.

My journey with Taylor has been filled with many, many ups & downs. There have been many close calls when we gathered to say goodbye to her , only to have her once again, smiling & happy. I would never wish those hard times on any parent but I would wish a child’s smiling happy face no matter the situation to ever single parent out there. To those that have special needs kids and those that do not.

My Funny Girl

2010-07-27T15:06:00.001-07:00

I guess it’s time to do a Taylor update. Things have been so busy here in the office that I’ve barely had time to think.

I swear, that swing has been a sanity saver for me. Of course, the days when it’s above 90 I can’t let her go out but that’s only been a few days this week.

Taylor is a weird child anyway. I know she has trouble regulating body temperature, but honestly. She’s out on the swing now, it’s 81 degrees and she has to have a blanket.

I’ve always called her my little old lady because she has to have a lap blanket on when she’s sitting in her room watching TV. It doesn’t matter how warm it is.

She just came in for a caffeine free diet coke (her drink of choice) and the box of cheese Ritz Bits to take outside. I had to quit buying the box of small packages of Ritz Bits because she learned how to open the pack by herself.

I’d go in her room and there would be 10 empty packs on her desk. Now with the box, I know when she’s getting them.

My almost 21 year old, little old lady, toddler is a funny girl and I wouldn’t trade her for the world. Even if she’s making me crazy with her increased level of big seizures.

She’s having at least 20+ big seizures a day right now. But you know what? When she’s done seizing, she smiles at me. I think she knows I need to know she’s okay. Well, as okay as she can be. How she knows, I have no clue. I just know that I need that smile when she’s done. It’s like a relief valve for me.

Taylor’s in heaven right now…diet coke, Ritz Bits, the swing, and her mp3 player. She’s singing so loud, I can hear her through the door. One of these days, I’ll have to tape her singing and share it. It’s the funniest thing…in a good way of course.

Oh yeah…what is with all the Chinese comments? Am I the only one getting a ton of them. I keep deleting because I have no clue what they say. Hell, there was one on a serious post about Taylor’s health that said “happy days are here again”. Seriously people?

Hair Washing Hell

2010-07-13T19:18:00.001-07:00

I wonder how many mothers of special needs kids have the same problem I’ve had since Taylor was a baby. She hates having her hair washed. It was worse when she was a toddler. She screamed so loud while I was washing her hair, the neighbors called the police for a “well-being check”. I mean seriously? She hated it that bad? Oh she loved and still loves taking a bath, but get out the shampoo and she’s no longer a happy camper.

Fast forward a number of years and I’m a single mom working in the children’s shoe department at Nordstrom. I work long hours. By this time, my oldest daughter Courtney lives down the road and is expecting my first grandchild. She watches Taylor for me. Does Taylor cry when Court washes her hair? Hell no! I would do the exact same thing Court would do, and Taylor would still throw a fit.

Fast forward to now. Taylor is 20 years old and still cries when I wash her hair. Now granted, she did have brain surgery and does have a scar across her head from ear to ear, but I don’t think it bothers her much. When she goes to my other daughter Brandy’s house, she even let Brandy blow dry it and use a flat iron on it. Do you think she would let me even plug in a flat iron in her presence? I don’t think so.

The school would send home notes some days that Taylor’s hair was so cute. I would have to send a note back saying if Taylor’s hair is cute, I didn’t do it, her sister did.

This has to be a “mom” thing. You know, kind of like when your kids are so good at other people’s house and you wonder why they are monsters at home. She must sense the fact that I’m mom and she’s supposed to cry if I wash her hair. She grew up tactilely defensive but after several years of therapy when she was young, that seemed to go away…except with her head.

Yeah, I know…kind of a silly post but I’m just wondering if anyone else has a similar situation. On a good note, we got a really great swing for our deck on sale at Wal-Mart and boy does Taylor love it. She’s been going out there everyday with her music and her magazines and just chilling. I think that was the best spent money ever.

Not Alone

2010-06-30T16:05:00.001-07:00

I know I need to do a better job of writing here but I don’t always want to write about bad or sad things. Lately, my mind just seems consumed by the changes Taylor’s brain is going through & how it is affecting who she has always been & who she might become.

However, after reading Joyce's blog, I know I’m not alone. I hope she won’t mind the link to her and her daughter’s blog. (If so, just let me know & I’ll remove it.)

That day of Taylor leaving me in the grocery store went from bad to worse. My middle daughter Brandy, who is Taylor’s respite care provider, thought it might give me a break if Taylor went to her house for awhile…something she does a lot. That day, she was acting so different & out of it that it scared Brandy. It was like “Invasion of the Body Snatchers” & my Taylor was someone else. Luckily, days end. It’s too bad the fears & feelings don’t end with it.

I am happy to say that we have not had anymore of those really horrible days. Is Taylor different than last month? Yes, but it’s our new normal. Just like her birth and subsequent medical problems became our new normal almost 21 years ago.

That’s something about our kids…there is always a “new normal”. They are never consistent unless you count consistently changing.

The other day, out of the blue, Taylor packed her things that she always takes to her sister’s house, put them at the end of the couch that looks out the window to the street and sat down. She sat on the end of that couch for several hours. She had it in her head that she wanted to go to her sister’s house & nothing was going to change her mind. We hadn’t planned on her going to Brandy’s but when I told Brandy what she did, she said she just had to come and get her when she was done with her other client. She did come get her & Taylor was as happy & sweet as ever.

I just have to brag for a minute. My daughter is a wonderful care provider for those with disabilities. I’m sure it’s because from the age of 5 years old, she grew up with a sister that had severe problems. Brandy was the first one to make Taylor laugh & the only one for awhile. My oldest daughter Courtney has a special bond with Taylor as well. Unfortunately, she lives in Georgia with her husband & kids.

Brandy & Courtney, never once complained about the time I had to spend with Taylor at the hospital. Taylor had a bad seizure when they were 11 & 12. She stopped breathing & her heart stopped. They did not panic. I did CPR, Courtney called 911, & Brandy went to the top of the driveway to wait for the ambulance. I have awesome girls.

I don’t know what I would do if Brandy hadn’t moved here to Oregon from Georgia last year. Because of lack of funding, the program that Taylor was going to do after graduation, she can’t do. They can’t afford a 1 on 1 aide for Taylor and Taylor can’t be left to her own devices because of her health & seizures. Brandy is sitting down with Taylor’s case worker and going to come up with some activities she can take Taylor to, so at least she will get out of the house. The program does go out a lot to plays, swimming, movies, & the like so that’s something Brandy can do with her.

I don’t want her life to be reduced to being bored to tears every day. Taylor is a social butterfly. She needs interaction with people…lots of people. So much so that right this very minute, Taylor is standing in the bathroom, looking out the window watching the traffic go by. *laughs* She’s been standing there for the past 20 minutes. Whatever makes her happy.

Still Shaking

2010-06-24T10:17:00.001-07:00

Not part of the story, but I wanted to share this picture Taylor’s sister took.

It’s been a couple of hours and I think I’m still shaking. I’ve been lucky in that since Taylor learned how to walk at the age of 6, she never really strayed away from my side or line of sight when we’ve been out.

However, since we’ve noticed the decrease in some of her functions, she has stepped away from my side but never really completely out of my line of sight.

This morning, all that changed. She loves to go to the grocery store with me. She always stands with me at checkout because she wants to make sure those food items that are specifically hers get put in bags. God forbid we leave something behind.

This morning, I was busy running my debit card to pay, just assuming Taylor was right there with me as usual but when I was done and looked up, she was nowhere in sight. My heart dropped to my feet. I started calling her name and looking at the usual places she might go. The deli ladies at the store know and love Taylor and so I thought maybe she walked over there, but no.

By now, I was panicking, thinking that as friendly as Taylor is, she walked away with someone. I was crying, the clerk was crying (yes, Taylor is well-known & loved at Safeway…gotta love a small town) and the manager was helping me try to find her.

One of the stock boys saw us and said, “are you looking for Taylor”? Yes, I know, even the stock boy knows her name. Anyway, he said that Taylor was in the back of the store in the bakery section, looking at the freshly made bagels. When I saw her, I had that mom moment where you can’t decide if you want to strangle your child or hug them to death.

I opted for expressing my displeasure at her behavior and holding her hand then hugging her while trying not to faint from relief. I looked at her face and realized that honestly, she wasn’t all there. She had this vacant, disconnected look on her face. I think that scared me even more.

I’m hoping that it was just “a moment” and that it’s not going to turn into a regular occurrence. Knowing that Taylor wasn’t going to wander off is apparently something I took for granted and now I know…I no longer have that luxury.

Taylor & Barney

2010-06-23T13:48:00.001-07:00

You know, I’ve realized lately that my last post didn’t quite start out the way I had envisioned. I started off with the picture first, then the title. When I started writing, well, you can see how that turned out so I do apologize again for a cheery title and then the downer post.

I try to limit those posts and I think that’s why I hadn’t written here for awhile. I’m one of those bloggers who starts writing and then just lets go. Sometimes, it’s not such a nice post. I will say that Taylor is sick again with another bad case of bronchitis. The doctor isn’t happy with Taylor’s increasing lung issues but I’m not going to write about that today.

Taylor started watching Barney when she was 2. Yes, Barney the dinosaur is an oldie. She quit watching when the show caved to all the criticism about how it was annoying for parents. That kind of sucked for me because I can honestly say, Taylor learned more from Barney than she did from going to elementary school.

Oh how she loved those songs and learning all the motions. She would drive us crazy, in a good way, to sing those songs with her. You know, ones like “Apples & Bananas”, “Boom, Boom, Ain’t it Great to be Crazy, & “There Was a Hole”. I’m not sure of the last title being correct but it was the first line of the song.

She really loved the Barney theme song and still loves to hear it. One of her favorite Barney shows was the movie “Imagination Island”. So the other day, when Taylor spent the night with her sister, Brandy found it on Netflix and put it on the computer for her to watch.

Brandy had to call me so she could tell me that Taylor was going crazy with excitement. She said she could hear Taylor all the way in the living room even with the bedroom door shut. Of course, there was a minor downside. Taylor wanted to keep watching it and at 11pm when she should have been sleeping, she was still laughing hysterically while watching it.

I’ve been thinking about trying to find the older Barney’s on Amazon and see if they’ve put some on DVD. That might help with some of Taylor’s boredom now that she will only be out of the house about 3 or 4 days a week. Maybe I can find this one too. Taylor loved this show as well.

To say that Taylor has an eclectic taste in TV would be an understatement. She loves “Blues Clues” and “Barney”, but you can still find her watching ESPN every day especially if there is baseball on. She also loves “Sports Center”. I don’t get where that one came from but then the inside of Taylor’s head is like sliding down the rabbit hole.

She is my silly, loving, affectionate, car magazine loving, caffeine free diet coke drinking, cheese Ritz Bits eating, toy throwing in the bathtub light of my life.

I’m thankful for everyday I can see her smiling face and get a slobbery kiss and giant hug from her…nothing better on the planet.

Gummi Worms & an Update

2010-06-17T11:12:00.001-07:00

Taylor & her sister enjoying some gummi worms.

Update: Sorry for using a happy title and then writing a depressing entry. I put the title and picture in 1st with the expectation of writing a blog on the picture but somehow I got sidetracked. I guess this needed to come out more than I realized. Thanks for all the kind words in your comments. They mean a lot to me.

Taylor graduated last Tuesday so that was her last day of school. By this past Monday, the summer boredoms had set in. She went from going to school everyday, to having to stay home. She doesn’t start her new program at Sunshine Industries until July.

Normally she would have gone to her sister’s house a couple of days this week but my grandson is really sick with some sort of virus. The last thing we need is for Taylor to get sick. We are hoping he’s better by tomorrow so she can go over Friday and spend the night.

As far as Taylor’s health is concerned, well there are some issues that are going on with her brain. We’ve noticed that for the past several months, Taylor’s behaviors have changed quite a bit. Because she has so many seizure a day, we know that brain tissue is dying and we think that whatever part controls memory might have died.

Normally, if Taylor asked you for something, if you told her to wait, she would…for a limited amount of time. Now when you tell her wait, she’ll ask again within 5 minutes. It’s like she forgot she just asked. Also, we’ve noticed a change in the way she “plays”.

Now, while Taylor has always had the attention span of a gnat, it’s even worse now. It’s like she’ll start something and then you see this look on her face like she forgot what she was doing. It’s hard to explain.

We just know that Taylor is losing more abilities much quicker. Sometimes I’ll watch her have so many seizures, one after the other and think, I need to call the neurologist. Then it hits me. Why bother? We have exhausted all medicines and medicine combinations. She takes 4 seizure meds right now. We’ve also exhausted all surgical options. Cutting her brain in half didn’t even stop the seizures.

I struggle with am I giving up too soon and do I want what could be her last weeks, months, years to be spent in the hospital. I know that when she goes, I’ll second guess my decisions, wondering if there was some treatment I missed. Deep down in my heart, I know I’m making the best decision I can for Taylor. Right now, she is happy (except for missing school) and for her, the quality of her life is good.

Unfortunately, those second-guessing thoughts come at night, when my brain just keeps replaying every medical decision I’ve made over and over…wondering if somewhere, I made the wrong choice.

I realize that we as parents of special needs kids do what we think is in the best interest of our child based on what information we have at the time and the deep love we have for our children. I keep telling myself that replaying Taylor’s life and worrying that I did something wrong is a waste of time. Sometimes, myself doesn’t listen.

My Baby is a High School Graduate!

2010-06-09T09:49:00.001-07:00

Last night was a total mix of emotions. Taylor loved wearing her cap & gown and she got a flower to carry in the procession. Boy, she was all about that flower.

When her name was called and she went up and got her diploma, there were lots of loud cheers and applause. We actually caught that on the video. Even the people seated around us realized how special Taylor’s graduation was and a few of them were teary-eyed as well. Taylor’s “boyfriend” Eric came to see her graduate and has a cameo in the video. Also, during the singing, you can hear my granddaughter Ally singing along.

Yes, I was a crybaby, but then, did anyone really think I wouldn’t be? I hope you enjoy the video. The Bossman did an awesome job of editing the parts together. There were some times when I had to stop to wipe the tears. I ended up giving Brandy, my middle daughter, the video camera to get the important parts.

All in all, it was a wonderful night and I’m so very proud of Taylor.

Tonight’s the Night!!!

2010-06-08T16:51:00.000-07:00

In less than 2 hours, my baby will have graduated high school. This is just a short post because I’m so full of emotions right now.

She was never supposed to survive her first year of life. Then it was she wasn’t going to make it past her 4th birthday. After that, she would never see her teens.

Now she is 20 years old and we are hitting a milestone we were told would never happen.

All I can say right now is WOW!!!! I hope to have decent video (without me crying) of tonight’s ceremony. Wish me luck.

Until then, enjoy this picture of Taylor in her cap & gown.

Memory Lane

2010-05-28T23:02:00.001-07:00

My baby graduates June 8th. She is going to walk across the stage in her cap & gown. I’m going to cry like a baby. Yes, I am very happy she has made it this far. I guess it’s just the change has me thrown a little.

There are good things happening for her after she graduates. We found a good program for her and I found out that her sister, who is already her respite provider, can be her 1 on 1 aide for the new program because of Taylor’s health issues. That’s going to be so great.

I won’t have to worry about what is going on with her during the day. That’s always been the hardest part for me…Taylor transitioning from one school to another. When your child is non-verbal you have to learn to trust those teachers that you leave her with everyday.

I’ve only ever had one bad experience with a school and that was when Taylor was 10-11 years old. Her seizures had started to get really bad. After music class one day, Taylor just stopped walking. They said she didn’t cry, but just wouldn’t walk. No one called me at work. They sent Taylor home on the bus like normal. My oldest was watching Taylor then and she said something was wrong with Taylor’s leg. By the time I got home at 10pm, Taylor was crying and her foot was hugely swollen.

I rushed her to the ER and she had a broken leg! When I went to the school the next day to figure out what happened, they said…”well, we had Taylor being watched by an older (12 year old) DS child when it was music time and they said the girl told them that Taylor fell while doing the “Hokey Pokey”.

Seriously? You left my constantly seizing child in the care of another special needs child and no one saw what happened to her? Not to mention that earlier in the school year, I would go pick Taylor up from school and find her outside at the top of the slide…by herself!!! Hello? She has bad seizures….remember?

Okay, sorry. I made myself mad all over again just relaying that story. Anyway, fortunately, in all of Taylor’s school years, that was they only bad teachers so I count myself lucky.

Sorry for the vent. That kind of came out of left field.

A Day Out Bowling

2010-05-18T14:31:00.001-07:00

Saturday, I went bowling with my daughters and grandkids. Taylor had spent the night with her sister and we thought it would be fun to do something together. Taylor loves to bowl. That was her first community trip when she was 3 years old and in the public school.

Taking the special kids out into the community has always been a big part of Taylor’s learning. It teaches the kids how to act and it gives the community the chance to know these kids are here. I’m sorry if that sounds a little off, I just don’t know how to word it any different.

I’ve always believed that taking the special kids bowling, to the store, to McDonalds, and the like gives people who may not have anyone special in their family or who may never come into contact with someone like Taylor the chance to see them as people/kids.

Now I’ll admit that Taylor is pretty popular in our town. She knows more people in Lebanon than I do. People always comment how much her smile lifts them up and how they love how happy she is. I like that.

Years ago, when Taylor was 6 and we were living in Atlanta, one of the kids in Taylor’s class never went anywhere unless with the class. Her mother said she just couldn’t deal with how people stared at her child. I’ll admit that that was something I had to get used to and depending on the situation, it can still get to me.

However, I’m not going to deprive Taylor the joy of socializing in the community because some adult can’t deal. I sat and talked with this mother. I invited her and her daughter to lunch and walk around the mall several times a month and eventually she learned to just enjoy her daughter’s joy at being out.

I didn’t do anything but understand and be there for her and I’m sure when the time came, she was there for another mother. Okay, this blog started out as just a “look, we went bowling blog” and ended up in a completely different place.

I guess that can be a bonus of blogging…being able to get things off your mind you didn’t know where there.

Sharing an Awesome Post

2010-05-05T12:49:00.001-07:00

I read this here and just wanted to share it with others.

Top 20 Reasons Moms of Kids With Special Needs ROCK

1. Because we never thought that “doing it all” would mean doing this much. But we do it all, and then some.

2. Because we’ve discovered patience we never knew we had.

3. Because we are willing to do something 10 times, 100 times, 1,000 times if that’s what it takes for our kids to learn something new.

4. Because we have heard doctors tell us the worst, and we've refused to believe them. TAKE THAT, nay-saying doctors of the world.

5. Because we have bad days and breakdowns and bawl-fests, and then we pick ourselves up and keep right on going.

6. Because we gracefully handle the stares, the comments, the rude remarks. Well, mostly gracefully.

7. Because we manage to get ourselves together and get out the door looking pretty damn good. Heck, we even make sweatpants look good.

8. Because we are strong. Man, are we strong. Who knew we could be this strong?

9. Because we aren’t just moms, wives, cooks, cleaners, chauffeurs, women who work. We are moms, wives, cooks, cleaners, chauffeurs, women who work, physical therapists, speech therapists, occupational therapists, teachers, researchers, nurses, coaches, and cheerleaders. Whew.

10. Because we work overtime every single day.

11. Because we also worry overtime, but we work it through. Or we eat chocolate or Pirate's Booty or gourmet cheese, which aren't reimbursable by insurance as mental-health necessities but should be.

12. Because we are more selfless than other moms. Our kids need us more.

13. Because we give our kids with special needs endless love, and then we still have so much love left for our other kids, our husbands, our family. And our hairstylist, of course.

14. Because we inspire one another in this crazy blogosphere every single day.

15. Because we understand our kids better than anyone else—even if they can’t talk, even if they can’t gesture, even if they can't look us in the eye. We know. We just know.

16. Because we never stop pushing for our kids.

17. Because we never stop hoping for them, either.

18. Because just when it seems like things are going OK, they're suddenly not OK, but we deal. Somehow, we always deal, even when it seems like our heads or hearts might explode.

19. Because when we look at our kids we just see great kids. Not "kids with cerebral palsy/autism/Down syndrome/developmental delays/whatever label."

20. Because, well,YOU tell me…

Stubborn Girl

2010-05-04T09:55:00.001-07:00

I’m experimenting with new fonts so if you have trouble reading this, please just let me know. I’m crazy that way…I love to constantly change fonts but sometimes it can annoy those who read my little blog.

Have I mentioned that Taylor is stubborn? About 6 months ago, Taylor got on this kick of not wanting to get on the school bus to come home. I would get a call from the school and have to drive to get her.

I’m thinking, lord if they didn’t know better, her teachers would swear Taylor was abused and didn’t want to come home. Honestly, I have no idea what started that little trend. But then, it’s Taylor, so no way to find out.

It’s been a good 2 months since we really had any more issues with her not getting on the bus so I thought we’d gotten through that little development.

Not so fast. Yesterday, I’m dealing with a customer when my cell phone rings. I can’t answer it so I just finish with the customer and wait for the voicemail. Sitting beside me is The Bossman, dealing with another customer and his cell phone rings. Of course, he can’t answer it either. (Note": the caller ID just says unknown so no way to know it’s the school.)

By the time I can listen to my voicemail, it’s the school saying Taylor is still there because she refused to get on the bus. Now if she weren’t over 6 feet tall, they could have maneuvered her on the bus. *laughs*

My daughter Brandy sends me an SMS message on my computer saying the school had called her…yep, they went right down the list. So Brandy went and got her. Well actually, Taylor told Brandy no when she tried to get her from school. However, Taylor the flirt, said yes to Brandy’s boyfriend when he said “come on Taylor, lets go home”.

Damn brat (said with love). This is one of those times when I would love to know what Taylor’s reasoning is for not coming home. I do have my suspicions…that’s how much Taylor loves school. So that just makes her graduation that much more bittersweet.

I decided to use a picture of Taylor when she was happy to get on the bus.

YAWNS

2010-05-02T10:16:00.000-07:00

Tired. Exhausted. Sleepy. No matter what word you can think of to describe lack of sleep…that’s me. Last night had to go down as the most exhausting night in my grandkids babysitting history.

I got more sleep when they were infants. At least then, you could fall asleep while the babies laid on you. Last night it was “no kid” sleeping night.

Let’s see. Gavin went to sleep really well. So did Ally…at least i thought so. It was Taylor that kept getting up making dozens of trips to the bathroom. Okay, so her tummy might have been upset. When I went in her room to check on her,she kept pointing to Ally in the port-a-crib. I thought she was just showing me that she was there.

Anyway, after an hour of her pointing, I leaned down to check on Ally and realized she was sleeping in throw up. Yuck! I picked her up, washed her off and laid her in bed with Taylor. I changed the sheets and put her back to bed. I thought, okay, that’s the end of that. Nope, from then on, she would cry about every 20 – 30 minutes. She would go back to sleep when I rubbed her back.

I had moved Gavin from the couch to the futon in Taylor’s room which was fine until he woke up scared. I had already made my bed on the couch so I could deal with them without waking The Bossman every time i had to get out of bed.

Gavin asked me to come lay with him on the futon. As soon as i did, Ally started to cry and then Taylor would sit up. By 4am, even Gavin had had enough, so I made him a bed on the floor next to the couch and at 5am, i finally dozed off on the couch. Of course, Taylor The All-Nighter, decided to turn her TV on at 7:30 this morning…quite loud.

Gavin was really good. He asked if he could have a pop tart, and he quietly ate it watching SpongeBob while I dozed on the couch for about another hour.

At 8:30, I finally gave it up, got Ally out of bed, laid her on the pallet on the floor where she still is. Poor baby doesn’t feel good. Taylor is happy she has her room back to herself and Gavin goes from the computer to the TV. He’s being a really big boy this morning and I’ve enjoyed his company.

The nights of Nanas. *laughs*

Even though it was a rough night, the kids have been really great and I've had a lot of fun with them. They are growing up so fast. Ally has the vocabulary of a 5 year old (she’s 2 1/2) and Gavin is just smart. The Bossman and I saw him surfing Amazon looking at train stuff. How that boy got to Amazon.com, I have no clue. The Bossman was amazed as well.

I’m tired again just reliving last night. At least The Bossman is still firmly ensconced in his bed sleeping peacefully. *smiles*

Changes

2010-04-29T16:25:00.001-07:00

I’ve been a crying mess the last few days when I start talking about Taylor’s graduation with her teachers. I’m not the only one. They are crying messes too. They said they are going to miss her sweet smile and her constant cheerfulness.

You would think I would be ecstatic about my profoundly developmentally disabled child graduating high school and I think a part of me is. However, we embark on a whole new journey of learning to trust.

When I said my non-verbal Taylor off to school, I have no worries that anyone is mistreating, ignoring, or doing anything else negative to her. She can’t come home and tell me about her day. I have to rely on those teacher who I’ve come to know and love.

After graduating, we have to find a program that has things she can do. Also, because of her seizures, she requires constant supervision, so she can’t just be '”turned loose” in a work program.

I’ve picked the program I think best suits Taylor and her teachers agree that it’s the best one for her. Unfortunately, things for Taylor just aren’t as cut & dried as they are for a lot of her classmates.

So now, Taylor’s cap & gown has been ordered. She will walk across the stage early so she doesn’t have to sit for a long period of time. Just writing that brings tears to my eyes. Change is hard when you have a child like Taylor. She’s so happy going to school. I want her to be as happy as that after school. Maybe it’s just me. I’m sure Taylor will adjust to the different program. Anything that gets her out and able to socialize makes her happy.

Right now, I just know that I’m the one having the trouble adjusting. It can be hard to have a daughter who remains a perpetual child while growing in chronological age. The world isn’t geared towards that. Everyone has to age out of the system and right now, for me, it sucks.

Okay, I guess that was my whine for the month…or maybe week…more likely day.

Anticipation

2010-04-28T12:26:00.001-07:00

Needless to say, The Bossman and I have been extremely busy since November. Now while that is great, especially in this economy, we’ve only really had a tiny break and that was going to the hockey game. While that was great fun, we really need a bigger break from the office & the many, many computers we have worked on.

I think that is one reason that I’ve tended to let this blog slip. I deal with so many computers that when I’m done, I don’t want anything to do with a computer at the end of the day. I’m trying to be a more consistent blogger, I promise.

So, The Bossman has surprised his loyal office “slave” (yes, that’s my nickname in the office *laughs*) with an upcoming 3 day trip. We are going to to Spirit Mountain Casino. While it’s not right on the Coast, we are only 30 minutes from the ocean. Besides, we get to see Penn & Teller! Can you tell I'm excited? It will be 3 whole evenings with just the 2 of us.!!!!

We are leaving on a Friday morning and not coming back until Monday. I'm so excited, i can’t stand it. All i can hear in my head is that old ketchup commercial.

Only 23 days and counting!!!!!!!!!!!!!!!

Taylor at the Prom

2010-04-26T21:18:00.001-07:00

This is Taylor's Senior year. So, I decided she should attend the prom. Now Taylor is very close to her friend Eric who is in her class. They hold hands and get excited to see each other every day.

They have this sweet, innocent relationship that defies explaining. Taylor has only had one other person that she has been that close friends with and that was back in Georgia and her name was Katie. Taylor would always sign "friend" when you asked who Katie was.

Okay, so I called up Eric's mom and asked if she thought Eric might be okay going to the prom with Taylor. She loved the idea. Unfortunately, Taylor is not your typical prom dress type of girl. I had to find one that was comfortable for her and something she would wear. I think I did good.

She really seemed to have a lot of fun. We even had their picture taken professionally at the prom, just like all the other kids. There might have been a twinge of sadness, wishing that Taylor could have been one of the "typical" girls, all dressed up with a date picking her up from the house. But just looking at the smile on her face took away any sadness that I was feeling.

There were quite a few of the typical teens that came over and told Taylor how pretty she looked. It's nice to know that there are some really neat kids at Taylor's school who are kind and compassionate.

Anyway, I just wanted to share a picture of Taylor and her date, Eric at the Jr/Sr Prom. Next, it's graduation time. *sighs*

Overdue Taylor Update

2010-04-12T15:44:00.001-07:00

It's been a long time since I've blogged here. I can't really give a reason why. I've started several blogs but never seemed to finish them. Maybe I'm practicing a subconscious form of avoidance.

Last week the school kept calling me and telling me that Taylor was running a temperature. It would start off around 100. They would call me an hour or two later and say it's 100.4 and I needed to come and get her. Anything over 100 requires her to leave school.

Of course, Taylor didn't want to come home, she loves school. This is her last year and I want her to get every possible day she can in. On Thursday when they called, I drove over to the school, signed her out, and then went to her class. The teacher said, "look, Taylor isn't acting sick and we know she has a problem regulating her body temperature so she can stay if you're all right with it". Well, that works for me. I told them to stop taking her temperature unless she is acting sick. *laughs*

Taylor was sick a few weeks ago with pneumonia again. I was telling "The Bossman" that Taylor was sick and he looked and me and said, "you know she isn't "sick" really, it's more like she just isn't doing well anymore". Well naturally I started to cry. He's right, but I keep telling myself that she is sick because that implies that she can get better and we all know that isn't going to happen.

She's happy and I guess that is the most important thing. She's stubborn and a fighter so she just keeps chugging along, doing the things that give her joy. She just keeps smiling through it all.

She has a 3 hour test coming up next week because of the poor circulation on the left side of her body. They need to figure out what's going on there. They have a hard time getting a blood pressure on her left side and her left foot and ankle stay swollen all the time. I'm hoping it's just another case of "Tayloritis" (anything that stumps the doctors is called Tayloritis). Sometimes I much prefer that than something serious…if that makes sense.

By the Way Doctor, I Forgot to Mention…

2010-03-12T20:45:00.001-08:00

This past summer, Taylor loved just watching this

truck go 'round & 'round.

You know, I could tell you more than you would ever want to know about seizures, Trisomy 9p, g-tubes, and a myriad of medications. What I don't know a lot about is congenital heart defects. I didn't know that 1 in every 125 babies born in the USA has a congenital heart defect.

Because Taylor's heart defect was never a big issue as she was growing up, I never thought of her as a "heart baby". Apparently she is…or was. Now she's a "heart girl". There always seemed to be something else trying to take Taylor away from us that didn't involve her heart. Seizures have always been the big, bad evil thing going on in her life…they still are.

However, now that Taylor is in the first stages of heart failure, I have to start thinking of her heart first when she gets sick. A couple of weeks ago, when she was sick on the weekend and we had to take her to Urgent Care, I actually forgot to mention to the doctor that she has a heart problem. After listing her main diagnosis and the seizure disorder and all the seizure meds, I just forgot failed to mention that Taylor has a heart defect. It sounds bad, I know.

It's just that Taylor's seizures have been the main focus for 18+ years. Her seizures have been what put her in the ICU on a ventilator more times than I can remember. Now, it seems, I have a "sort of new" issue that I have to remember to tell the doctors. That way they won't freak out quite so much when they see her blood pressure and I have to go, "oh yeah, by the way…".

Bad Blogger

2010-03-10T20:59:00.001-08:00

Taylor has a thing for playing in her sister's kitchen drawers.

I've been a bad, bad blogger lately. I think it's because things have been so hectic around here with everyone being sick and the business being busy that I didn't want to do a whiney post. But let's face it…the past few months have been whine-worthy.

However, I'm not going to give in to my inner child and be a crybaby. There are lots of good things I can post about that have been going on. While Taylor did have pneumonia…AGAIN…it wasn't as bad as the last time and she seemed to handle it better.

The business has been crazy busy with many, many computer coming in. Now that can be kind of a double-edged sword because we are so busy we barely have time to relax, it also means we don't have to worry about money. In this economy…that is huge. The Bossman and I did get a chance to get away from the office/house/Taylor/computers for an evening. We went to a Portland Winterhawks game. Man it was a good game but then I'm a bonafide hockeychick and any hockey game is a good one. The Winterhawks won and it was so nice to just be out with The Bossman, cheering on the team. He is looking to get us to at least one playoff game as they had a great season.

Taylor has been enjoying spending lots of time with her sister. Taylor loves playing with her 2 ½ year old niece. They are so funny together. It lets her get out of the house for awhile, gives me some time to just get stuff done without having to take care of Taylor, and since Brandy is Taylor's respite care worker, she gets paid…it's the trifecta of good things.

Hopefully, as time permits, I can start catching up on my friends' blogs. I really have missed reading them and I've definitely missed chatting with everyone.

Here's to a slightly slower paced life…at least for a week or so. *laughs*

I’m Home!!!!!

2010-02-27T14:06:00.001-08:00

I meant to post this several days ago. I am out of the hospital and recovering. The doctor said it will probably take a month or so for my lungs to go back to "my normal" but I'm definitely glad to be home.

Being woken up at 4:30am every morning to have your blood drawn isn't really helpful to getting rest. Thank you to all my friends who wished me a speedy recovery. I will definitely update what's going on in more detail in the next few days.

Dawn is in the hospital

2010-02-18T18:28:00.001-08:00

I just wanted to let you know, Dawn was admitted to the hospital yesterday for serious problems with her asthma, which is now pneumonia.

She did not come home today, and hopefully will be back tomorrow. The important thing is she is getting rest and the proper attention to help her heal.

Bossman (Paul)

What’s Been Going On

2010-02-05T11:41:00.001-08:00

I guess it's time to update my blog and all my friends on what's been going on. I know I've been MIA lately. Everyone knows that The Bossman's mom passed away. I appreciate all your kind thoughts as does The Bossman. It meant a great deal to him.

The week after the funeral, I had to go to school and pick up Taylor. Of course she had a fever. It was 101 by the time I got there. She was also coughing a great deal. Now, when she left for school that morning, I hadn't heard a single sniffle, cough, or sneeze. I took her straight from school to the doctor. How can someone go from fine one minute to full blown pneumonia the next? I don't know why I act surprised, it's Taylor. That's what she does. Okay, I can handle taking care of Taylor, working, and trying to help The Bossman any way I can with his grief. I always wish I could say something profound that helps but all I can do is be there when he needs me to lean on.

However, 2 days after Taylor got sick, my throat started to hurt. Then my lymph nodes swelled up and my temperature spiked to 103. Yeah, just what I needed. The Bossman promptly (even though I didn't want to go, I don't argue with The Bossman) sent me off to Urgent Care. Sometimes it's annoying when he's right. I was thinking just a bad cold or something. Nope…I also had pneumonia complicated by my asthma and a viral infection of the throat. I can't remember the last time I was that sick. I just could not function. But we all know as mom's, we have to. The Bossman took care of the business…and wouldn't you just know that that week we got so many computers in, it was crazy.

I would feed and medicate Taylor, she would lay in her bed watching TV and looking at her car magazines and I would drag my body back to the couch. Of course, having a business out of your house means you can't be lying around sick in your pajamas so I had to lie around completely dressed. Not fun when your temperature goes up to 104. I had no voice so all I could do is gesture or write. The Bossman thought that was kind of fun because at night when we were watching TV, he'd talk to me and all I could was nod or smile. He said that was nice since he could say anything he wanted without any rebuttals from the peanut gallery.

Things are finally back to our normal. Taylor is back at school and so far so good…no calls. I am feeling almost 100%. I still have a lingering cough but with my asthma, that's normal. Now I'm just letting The Bossman sleep in while I take care of the office. He said we work in shifts. I have the early shift then he gets up and works until 2am. We are still busy as hell. There are so many computers in the shop right now that I've run out of room in our normal holding area…and it's big. In this economy though, we are doing very well and I am very thankful for that. People will come up with the money to fix their computers. I think sometimes they'll forgo food just so they can get on FaceBook, MySpace, or play WOW. Hey works for me. *laughs*

Hopefully I'll be able to catch up with everyone. I've started trying to leave comments on blogs. Bear with me as it might take me a bit.

*hugs to all my friends…I've missed you*

Revisiting a Poem

2010-02-04T10:07:00.001-08:00

Taylor @ 4 years old

I know just about everyone has read this at one time or another. I just felt the need to share it again.

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year, nearly one hundred thousand women will become mothers of special needs children. Did you ever wonder how these mothers of special needs children are chosen?

Somehow visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth: son, patron saint, Matthew. Forest, Marjorie: Daughter, patron saint, Cecilia. "Rutledge, Carrie: twins, patron saint.....give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles. "Give her a profoundly developmentally disabled child." The angel is curious. "Why this one, God? She's so happy."

"Exactly," says God. "Could I give a child with a disability to a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."

"But Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps. "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Mommy" for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see if as few people ever see my creations.

"I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing my work as surely as she is here by my side."

And what about her patron saint?" asks the angel, pen poised in midair.

God smiles, "A mirror will suffice."

In Loving Memory

2010-01-19T19:52:00.001-08:00

The Bossman spent this weekend putting together a slideshow for his mother's service. All I can say is that he did an excellent job. I don't have the words to say how awesome it is, so I'm going to share the video here and let it speak for itself.

Goodbye Nathalie

2010-01-16T13:06:00.001-08:00

Can I just say that this month has been a rough one so far and it's only half-way through. Not only have The Bossman and I been dealing with Taylor's declining health, we have had to deal with the declining health of his mother. We've spent the last few backs going back and forth from hospital to care home to hospital...a crazy merry-go-round of emotions.

The Bossman's mother passed away yesterday afternoon and she is finally at peace. Even though I know The Bossman is happy her suffering is over, I know he will be grieving. However, the journey getting her to her final peace has been very emotionally draining for him.

The Bossman's parents have been married for 65 years. They met when his mom was 14 & his dad was 18. That's a lot of time together. Unfortunately, sometimes, it makes it hard to let go when it is time for one to pass on.

While The Bossman and his siblings knew the end was near, his dad was suffering from a huge, but understandable case of denial. This resulted in her last few days being ones that were filled with needless pain. I kind of know how he feels. Am I going to be able to make the right decisions for Taylor when it comes time or am I going to want to hold on to her for my sake and cause her pain?

Those are some serious issues that you don't know how you are going to handle until that time comes. All I could do was to support The Bossman as he tried to support his dad. I am glad that I got to know his mother even though it was only for a short time…4 years.

What's so funny is how she took to Taylor much to everyone's surprise. Not to imply that she was mean or anything, but she was already suffering with Parkinson's when Taylor and I met her and The Bossman said she was a little "grumpy"…but not with Taylor. She's the one that referred to herself as "grandma" when talking to Taylor…again, another surprise.

She was nice to me and I knew that she liked me. That's a big thing considering I was with the baby of the family and usually no female was good enough for him. Sometimes I still think that's true. He's an awesome man from an awesome family and I'm glad that they always make me feel like a part of it. They made Taylor and I feel welcome when we moved 2000 miles away from our family.

As far as making the right decisions for Taylor…I know I don't have to make them alone so that takes away a great deal of the fear. I know The Bossman will always put what is best for Taylor ahead of what my feelings might be and that he will gently guide me to the right path.

Right now I am his support during his loss. One day, he will be mine.

A Case of the “Why Me’s”

2010-01-13T09:28:00.001-08:00

I know I haven't posted here very much lately. I'm sure the friends I've made through this network probably think I'm some kind of flake.

I got a call from Taylor's school this morning telling me that I needed to come and get her because she has a temperature of 100.9. This is happening at least once a week now. On the way home from getting her, I just started crying. I realized that I've been neglecting my blog and those of my friends because I'm engaging in a huge case of avoidance.

I'm watching my child's health decline faster and faster and I guess if I don't write about it, I can pretend it's not happening. Deep down I realize that this doesn't really work. I see every minute detail of change that goes on with Taylor. I KNOW what is happening with her but all of a sudden it just seems to be coming too fast…faster than I can deal with.

She had a cardiology appointment last Friday and the nurse couldn't find a blood pressure or her pulse on the left side of her body. The doctor looked at how swollen her left foot and ankle is and had trouble finding a pulse there as well. For some reason, unrelated to her heart he says, she has decreased blood flow on the left side of her body. He said if it were due to the heart failure, it would be both sides. So now we have one more thing to "figure" out.

I feel like I'm reaching my breaking point even though I know that that is a luxury I don't have. Taylor needs me and my strength as her energy and strength declines on what seems like a daily basis. Indulging in self pity is pointless yet that is what I'm feeling at this moment. Why me? Why my child? It's stupid and I know that. There are so many more parents dealing with even more devastating issues than I am and I've always prided myself on being strong.

Right now, I don't feel strong. Right now, I just feel scared because I can't "fix" it. I am sorry for avoiding the wonderful friends I've made in the blogging world. I think it's because I know that the topic of Taylor would come up and I wouldn't be able to keep my emotions in check.

Okay, I think I'm done with my pity party. Sometimes just being able to just throw the words on the "paper" help a great deal. Time to put on my big girl panties and go back to being strong.

A Great Christmas Present Reaction

2010-01-03T23:33:00.001-08:00

While I'm working on my catch-up post, I thought I would send you to The Bossman's YouTube page. I would imbed the video here, but after all the hard work he put into my grandson's Christmas present, he deserves the hits.

So if you would like to see an awesome response to a Christmas Present…just go here. Also check out the shorter-remix version here. Feel free to leave comments if you like. Goodness knows I have an awesome Bossman and he deserves all the kudos in the world.

He's made my grandkids just as much a part of his life as I am and I love him very much.

I’m Still Among the Living

2010-01-03T13:42:00.001-08:00

I really need to catch up with everything. I can't believe it's been so long since I last posted. I just know things have been very hectic here and my blog always seems to be the thing that gets left undone.

I suppose in the scheme of things, that's how it should be but I always have this nagging voice in the back of my mind going…"shouldn't you blog, really, shouldn't you at least say you are alive, really?"

So, here I am, letting my friends know that I am still a blimp on the planet. Things are going as well as they could be with Taylor and life is just a bit topsy turvy right now. I'll share more later, including Christmas pics since I know I'm way behind on that.

I hope this finds everyone having a great start to the New Year.

Taylor vs the Canned Goods

2009-12-15T12:12:00.001-08:00

*I think I fixed the video. Let me know.*

As promised, here is the video of Taylor and her canned goods sorting fun. I have no clue what it is about this that she loves, but goodness knows, I'm not going to keep her from doing it. I just need to make sure there are no glass objects in the cupboard. Seizures and glass don't mix. I learned that after this video was taped.

As you can see, Taylor isn't happy that I'm "annoying" her with my presence. She does tell me to leave. Please pardon all my talking on this video…it sounds funny to me. Also, since I have no editing capabilities…please ignore my extreme close up at the end. I promise I do look a little better in real life than that video show.

Taylor & the Train

2009-12-14T15:32:00.001-08:00

I know that I need to post an update on Taylor's medical situation but I thought maybe I would just post a video I took of Taylor Saturday night. She has never really been fascinated with all the train stuff going on with The Bossman.

However, this year, he bought a G-gauge train for under the tree. Taylor was fascinated with it. She just lay on the floor with a pillow and blanket watching the train go around and around. We are working on teaching her the sign for train. Of course, it's Taylor, so she has to modify it her own way.

We are watching Taylor a little more closely right now. I knew that her heart valve would cause a problem at some point in her life, I just wasn't expecting it right now. I hate looking at the information online though. When they start explain valve replacement, it is open heart surgery with the breaking of the sternum. Just typing that makes my chest hurt. I hate having to make those decisions. It's not like I can ask her what she would want.

Okay, enough of that. Here's a nice video to leave you with.

Busy, Busy, Busy

2009-12-10T21:48:00.001-08:00

I can't believe it's been 10 days since I've written a blog entry. Things have been hectic, but I hadn't realized just how much until tonight. Yesterday was The Bossman's birthday. My daughter and grandkids came over and we surprised him with a cake and some presents.

This past weekend, The Bossman and I took my grandson Gavin to a train club in Corvallis. It was just a Bossman, Nana, & Gavin trip. He is autistic and it really shows in these videos…watch the hand flapping. However, he was so good and he was so excited that I loved every minute of it. Seeing his excitement is contagious and I have to keep watching. I've put Part 1 of the video here in this blog, but if you want, you should check out parts 2 & 3. It was Gavin's turn to take care of the class bear, so that is why my grandson is holding a bear dressed in pink…her name is Miss Katie Bear. All the kids take turns taking her home and they write and put pictures in a journal for the class. It's a cool idea.

Taylor has had a really good week. Tomorrow she has a neurology and a cardiology appointment and then it's off to get some blood work done while they are flushing her port. I wish I could say that the new medicine is helping her seizures, but I haven't noticed any decrease yet. I'm still keeping my fingers crossed.

For the past few days, Taylor has been obsessed with rearranging the canned goods in the kitchen cabinet. She spent 3 hours straight, just standing in the kitchen, pulling all the of the food out of the cabinet, putting it on the counter, and then back in the cabinet. She's done this for 4 days in a row. Normally she'll only do it for a minute or two. I've got some video of her doing it. I'll have to get The Bossman to download it for me. For some reason, my computer doesn't let me edit the movies. I guess I need to get the repair guy on it. *laughs*

Business has been extremely busy. I am definitely not complaining as that is what is allowing us to have such a great Christmas and pay all of our bills. November was our busiest month since opening the business in July of 2008 and December shows no signs of slowing down. We got in 5 computers yesterday alone. People let their anti-virus expire and then load the computer with viruses…bad for them, but good for us.

I hope everyone else is having a great month and that all my friends and their families are staying healthy. I'm so far behind in reading everyone's blogs. I promise I'll catch up soon.

Decking the Halls

2009-11-30T20:47:00.001-08:00

I love all the decorations that come with Christmas. We've already got our outside lights put up and the inside is decorated as well. All we need is a tree. Taylor likes looking at all the lights. She also loves anything that lights up and plays music. We have Christmas decoration with Elmo, Cookie Monster, and Oscar the Grouch sitting on a sled. When you squeeze Elmo's hand, they sing and move.

Last Christmas it was a nightmare trying to get Taylor to leave it alone. Every time you turned around, she had grabbed it and ran in her room with it. I'm guessing she remembers that it's for the living room this year because when I got it out, she actually asked if she could take it in her room. When I told her no, she seemed okay with that.

Of course, the first night it was out, she had to come out of her room 10 times to go to the bathroom because she got to walk right past it. She looked at it each time but didn't bother it, so it's an improvement. Today when she came home from school, she made it sing a couple of times and seemed happy with that. We have a little tree and she stuck it on her dresser, so I plugged it in and she fell asleep with it lit up.

We have no idea what we are going to get her for Christmas this year. It's not like she can tell me what she wants and she has all the toys she likes to play with. I think I would like to get her new bedding and redo her room. Maybe I can do that for her for Christmas. We will get the usual things for her stocking…car magazines, bubble bath (can't have a bath without bubbles"), and a few other little things.

I had to reschedule Taylor's cardiology appointment. She had been sick over the weekend and I didn't want to drag her off to the hospital right now. This is proving to be a bad winter for Taylor. Last year was a good one and the one before was a bad one, so I guess we are keeping with the normal pattern.

Perfection is in the Eyes of the Beholder

2009-11-24T12:41:00.001-08:00

To say that I'm not religious would be an understatement. However, I do believe in God. When Taylor was born I was attending the church of her father (my ex-husband now) and it was a fundamentalist, Pentecostal church. While I was going through everything with Taylor, I had several members of the church tell me that I wasn't praying hard enough or didn't have enough faith and that was why Taylor wasn't "made whole & normal". Thankfully, the majority of the people were not like that, but those few are what started my questioning of the whole religious thing.

I came across this poem on someone's blog and saved it awhile ago. Today, I thought I would post it here because regardless of what you believe, I think it touches "something" inside. Yes, it made me cry but then anything like this usually does. Taylor is eternal innocence and I just wanted to share.

"As a small group of political and church leaders look on,

Jesus lifts a mentally handicapped child out of her chair kisses her and sits her on his knee. He dips a crust of bread in wine and feeds it to her, morsel by morsel.

As he does so, Jesus says:"I know what you are thinking. You need a sign. What better one could I give than to make this little one whole and new?

I could do it; but I will not.

I am the Lord and not a conjurer.

I gave this mite a gift I denied all of you -- eternal innocence.

To you she looks imperfect

But to me she is flawless,

Like the bud that dies unopened or the fledgling that falls from the nest to be devoured by ants. She will never offend me, as all of you have done.

She will never pervert or destroy the work of {my} hands.

She is necessary to you.

She will evoke the kindness that will keep you human.

Her infirmity will prompt you to gratitude for your own good fortune...More!

She will remind you that every day I am who I am, that my ways are not your ways and that the smallest dust mote whirled in the darkest space does not fall out of my hand...

I have chosen you.

You have not chosen me.

This little one is my sign to you.

Treasure her!"

Waiting

2009-11-19T20:15:00.001-08:00

Today was Taylor's echocardiogram and I will admit to wanting to know how her valve looks. However, I couldn't really tell you why I thought I would find something out today. The Bossman would just laugh and say something sarcastic about my brain…or lack thereof.

Anyway, the technicians never tell you anything. I think they take a class specifically on how to not change their demeanor no matter what they see. I now have to wait 10 days until Taylor sees her cardiologist on the 30^th.

I think I'm just a little anxious because there are some changes going on with Taylor that no one can seem to come up with a reason for. She has some discolorations of her fingers and toes but Taylor doesn't have great circulation to begin with so it could be totally unrelated to her heart. Her left foot has been swollen for over a year and no one can figure out why. At first they thought gout. Gout? In an 18 year old…obviously that wasn't it. They've take x-rays and now the swelling is moving up past her ankle. She takes her shoes off the minute she gets home. I've been lucky enough to have a couple of pair of low-top converse for her…they seem to stretch.

I have no clue if all these other symptoms going on have anything to do with her heart. I honestly hope they aren't. Of course, that means starting from scratch to see what else is going on. Part of me wonders if it even matters anymore. If it's a matter of life and death, absolutely I'll make the decisions that need to be made. I just don't want to put her through things that won't help.

Taylor is a very happy, affectionate, loving, "little girl". I want her to spend her time doing those things that she enjoys…that's what gives Taylor her good quality of life.

So now the 10 wait commences. Thanks to all my friends for their good thoughts today.

Frustration

2009-11-17T17:47:00.001-08:00

The word for the day is…FRUSTRATION. I sent Taylor to school today because she has been fever free for over 24 hours. Well, I got a call from the school nurse at noon saying I needed to come get Taylor because she had a temperature of 100.3. Taylor's teacher and I both tried to explain to the nurse that the new seizure medicine Taylor has started has a side effect of increased temperature. Also, Taylor can't regulate her body temperature because of her brain defect. This is documented by a doctor in her school file.

However, the fever nazi didn't want to listen to any of that. I even sent the print out from the pharmacy listing the side effects of the drug. The teacher tried to explain to the nurse that they can tell when Taylor is sick by her actions and she was not acting sick in any way, shape, or form. Taylor did not want to come home. She loves school. Besides, I had her 3 year evaluation meeting at the school anyway, so I had to bring her back with me. She had 25+ seizures in 30 minutes this morning as well, so that was just one more thing for the nurse to latch on to though her teachers are very good at dealing with Taylor when she has bad seizure days. I love her teacher and the aides…they rock!

It's always fun when Taylor is evaluated by the psychologist. It's so anti-climactic. Taylor is still a tardy…what a surprise. Okay, I realize that sounds awful but honestly, sometimes you just wonder where common sense is. Taylor can't take an IQ test. She only has 9 words in her whole vocabulary and maybe 10 signs. I don't need it in writing that my child has a lower IQ than 99% of the people her age.

Some of the things they write are funny. I love this line from Taylor's evaluation…"She knows several signs receptively and signs the word "bathroom" when she needs to use the restroom, but also seems to use the sign when she wants to escape an activity." That is just too funny to me. Sometimes these evaluations can make me a little down, but for the most part, I've gotten past that.

It's trying to figure out what Taylor will be able to do after she "graduates" from school that is frustrating. She is such a social butterfly and not going to school every day is going to be rough for her. She is also too delayed to get a job. I do think we've found a program for her that will meet her needs for 2 – 3 days a week, a couple of hours a day. I still have until June to figure it out.

Gum…The New Asthma Medicine.

2009-11-16T23:01:00.001-08:00

Has it only been 3 days since I last posted? It feels like a month. Today has been the first day Taylor has been fever free, so it looks like she will be able to go back to school tomorrow. It's been a rough week. Taylor just doesn't do well when she is sick. She doesn't understand taking it easy and she would rather go to school, sick or not.

The Bossman has been sick for over a week as well and I thought it was going to bypass me, but apparently not. I have really bad asthma and last night at around 10 or so, I could feel one coming on. I did the inhaler & nebulizer stuff but it just wasn't helping. Once I start coughing, I can't seem to stop. I have been hospitalized several times for my asthma. I usually have a good experience as far as any ER experience can be good.

However last night was not a good experience. I actually had the doctor tell me to try chewing gum to stop coughing. Yes, really…gum. We got the wheezing under control by several nebulizer treatments using a stronger medicine than I have at home. As far as my coughing goes, not so much. I have Delsym at home and sometimes it will help but not so much last night. In case you didn't know, Delsym is an over the counter cough syrup consisting of nothing other than dextromethrophan …you know…the same stuff in Robitussin. The only difference is that the Delsym is in a suspension form. It's supposed to make it last longer. Now this doctor tried to tell me that Delsym is a narcotic. Seriously? What narcotic can you buy over the counter at Wal-Mart. When I mentioned it's an otc, he said, "well, it tricks your brain into thinking it's a narcotic". Yeah, okay…whatever. I swear, he made me feel like I was a drug-seeking fiend. All I wanted was to stop coughing. Every nurse that came in the room kept telling me that my cough was making their chest hurt. Imagine how it made mine.

I suppose I'm done ranting. I'm feeling like crap today, but I'm hoping it's a quickie sickness and not some drawn out flu or anything. I don't have time for that. Taylor has her echocardiogram on Thursday and then her cardiology appointment in 2 weeks. Hopefully her aortic stenosis will not have advanced any farther. I am just not ready to be making valve replacement surgery decisions.

I have many blogs to catch up on and hopefully my internet friends will understand my absence. I have just been too busy and/or tired to sit at the computer any longer than I have to. Right now, I'm enjoying listening to this wild wind that is blowing outside. We've had gusts up to 25 – 30 miles per hour. I love the wind, so I'm going to go snuggle on the couch, watch TV and listen to the wind.

Yes I Did…Just Have a Pity Party

2009-11-13T02:16:00.001-08:00

It's time for "Yes I Did Friday". This is the brainchild of Jeanette, so make sure you head over to her blog and link up.

Yes it is 2am on Friday morning and I'm sitting up because I'm scared to go to sleep. Taylor's fever is 103.5 right now and she is very "out of it". I know she is the one that is sick. She is the one that has to deal with feeling bad, but right now, I'm just very tired.

Yes I am having a moment of feeling sorry for myself. At least that's what I think I'm feeling. Right now, at this very moment, I wish I had a "normal" child. I wish I had a child who could tell me exactly how she is feeling. I wish I had a child that didn't have seizures. I wish I could trade the worries I have right now with the worries of…is she passing her college classes, do I like the boy she is dating, is she practicing safe sex.

My "Yes I Did Friday" post is just one big old poor me post and I apologize ahead of time to everyone. Maybe it's the lateness of the hour, or earliness depending on your perspective. Maybe it's that I'm tired and I just wanted to sleep in my own bed and not the lumpy couch that always sucks my butt in between the 2 cushions, forcing me into a V shape.

Yes I Did force you, my fellow readers to participate in my surprise pity party. Awww…screw it. I'm done already. I've given Taylor some medicine and I'm going to go do some mindless infomercial surfing, unless I get lucky and find an interesting show to watch in the middle of the Snuggie and Obama Chia Pet commercials.

Thank you for letting me vent and get it all out of my system. I promise I only have moments of self pity and I try to make them few and far between.

I think I need an AP & Nikki B intervention! They make me laugh.

Conundrum, Thy Name is Taylor

2009-11-10T21:27:00.001-08:00

Taylor after her PICC line placement (before the port)

I'm going to whine for a few minutes. Well, maybe it isn't whining as much as it is complaining. Yesterday was a rough seizure day for Taylor. Okay, I can handle that. That is nothing new for us. A good seizure day is less than 50 a day, so seizure free isn't in our vocabulary.

Anyway, Taylor wakes up at 3 am coughing with a temperature of 101.5. Fine…I can tell this is going to be a rough winter. Taylor alternates. We have good winters and bad ones. This is shaping up to be a rough one. I'm assuming it can't be the flu because we've already been there, done that a few months ago.

I take her to the doctor and he says…she has the flu. What? I mention that he diagnosed her with the H1N1 flu back in September. Now, don't get me wrong, I love our doctor. He does the best he can with Taylor and that's all I can ask for. The Trisomy 9p throws most of the doctors off. However, I'm expecting him to come up with something other than the flu…a cold maybe? He says to me, well, she either had the flu back in September and she doesn't now or she has the flu now and she didn't back in September. Yeah…I'm guessing your faces are probably looking like mine did.

We are treating her for the flu again. But guess what? The insurance won't pay for the Tamiflu because she's already had the flu and so she shouldn't need Tamilflu again. Whatever. I'm just going to treat her symptoms and see if she gets better. If she doesn't, then we'll know she needs something else.

On a side note, Taylor was born with a heart defect. She had a VSD but luckily it closed on its own when she was 6 months old. She also has a bicuspid aortic valve with aortic stenosis. Now this defect ended up being the least of her issues but as she has gotten older it's starting to cause some problems. Her doctor did notice her fingertips were a little blue and her lips were not pink…but they weren't blue either. They were sort of in-between.

I told the doctor that she has an echo cardiogram in a couple of weeks and she sees the cardiologist on November 30^th. To be honest, the doctors told us that Taylor wouldn't live long enough for her heart valve to become an issue. Well…she decided to prove them wrong and now that she is 20, it looks like a valve replacement will be in her future…again, if she hangs around for awhile longer.

Taylor is stubborn and she is having way too much fun in her life and I can just see her giving the finger to all those doctors that tried to write her off. I sometimes think she wishes she could just say a big "F**K YOU" to all those people that said she would never see her 1^st birthday. I love that girl more than I could ever find the words for.

Sometimes…& Seizures Suck!

2009-11-09T19:44:00.001-08:00

I got my first blog award. Thanks Jennifer. I know that I blog as a way to vent and I do hope that what I write can be of help to others but I will admit that there is also a part of me that likes it when I know people are reading my blog. I like to get comments. While that isn't the sole purpose of blogging, I would be lying if I said I could care less whether anyone comments…I do.

Today has been a rough day here. Taylor has been on the new seizure med Banzel since Thursday night. I know that it hasn't had a chance to build up in her system but I sure hope it will hurry up and help. The school called today and I had to go pick Taylor up. She was seizing too much for them to handle. Taylor had over 40 seizures in 20 minutes. The teacher/aides are very good about writing down every seizure and the time and the poor lady was carrying around a piece of paper trying to keep track.

She came home and has been seizing like crazy. She's had some serious drop seizures. There's a second nature to Taylor. I think she has an aura or something because she'll be standing there and then all of a sudden reach for the wall/chair/person…whatever she can grab to hold on to a second before she would have fallen due to a seizure.

Probably 3 – 4 years ago, I would have packed her off to the ER for IV Ativan to try and slow down her seizure activity. Now, I just don't see the need. Her seizures are uncontrolled…I know that. I just don't want to fill up her time with short acting medicines and needles (even if she does have a port).

Sometimes I feel like I've given up on her. Sometimes I second guess my decisions and wonder if I'm doing what's best for her. I hate those feelings. I feel that I'm making the best decisions I know how to make for Taylor but I guess only time will tell if I've chosen correctly or wisely.

There are no absolutes when it comes to treatment for Taylor. I just know she is much happier throwing her toys into the bathtub than she would be, in the hospital, hooked up to an IV being pumped full of a barbiturate.

The rules state that I get to pass this along to 15 other newly discovered blogs that I love. Should any of you choose to accept this mission…post it on your blog together with the name of the person who has granted the award, and his or her blog link. Pass the award to 15 other blogs that you’ve newly discovered. Remember to contact the blogger to let them know they have been chosen for this award. I don’t have 15 blogs to pass it on to, but I am going to pick those blogs that I think rock! Please check them out, they are great reads.
1. Blogzilly
2. ConlonClan
3. Model Trains – A Hobby Revisited
4. Lila’s Miracle Life
5. The Bates Motel
6. Rissa Roo & Her Family Too
7. Lia Joy
8. Paisley Place
9. Alabama Slacker Mama
10. Anemone Pie
11. Colton’s Journey

A Tale of 2 Berlins

2009-11-08T02:00:00.001-08:00

I couldn't sleep tonight, so I started watching a documentary about the Berlin Wall. Watching it brought back an interesting memory. It's funny now to look back at but I can assure you, at the time, it was anything but funny.

I grew up an Army brat. I was actually born in Stuttgart, Germany. We came back to the states when I was less than a year old. That was 1963. Thirteen years later, my dad was once again stationed in Germany. This time, we were in Heidelberg. My dad was part of the 207^th Aviation Company. He was an Army pilot.

I loved being in Germany as a teenager. We traveled all over Europe. We went to England, France, Belgium, Italy, Switzerland, Austria, and even the tiny country of Liechtenstein. Since I've already dated myself, I can share that when I was living in Heidelberg, Germany was divided in 2. We decided to take a family trip to Berlin. Now if you know your history, you know that Berlin was divided in 2 and the entire city was located in the middle of East Germany.

To get there, we had to get special passports and rode what was called the troop train. Once we passed from the West into the East, we had to stop at every station for the East German or Russian soldiers to board the train and check our passports. They also had mirrors on long poles that they would slide under the train to see if anyone was holding on to the bottom of the train, trying to escape to the West. My brother and I had our own little room on the train because this was an overnight ride. It was great fun.

So, we get to Berlin. It was my dad, mom, a close family friend we always called Uncle Dave, my brother, and me. Uncle Dave wanted to go into East Berlin. Because of my dad's job, he wasn't allowed to go, so he and my brother spent the day at the Berlin Zoo. That left Uncle Dave, my mom, and me to go into East Berlin.

Something to know about is the money exchange. In West Berlin, you could get 4 East German marks for 1 West German mark while it was 1 for 1 in East Germany. Keep in mind; you weren't supposed to bring any money across the border. You were supposed to exchange it once you crossed into the East. However, I guess we wanted to be greedy and have more money to spend. Now you have to remember that I was only 14 years old and this was 1977 when 14 was still a child.

We exchange the money and I put it in the bottom of my sock and slip my shoes on. We head through Check Point Charlie. Once we get to the East German side, we walk into a building and my face turns completely white. In this building are several dressing rooms. I've now become terrified that I am going to be strip searched, they are going to find the money in my shoe, and I'm going to be carted off to a Russian prison. My mother grabs my hand because I'm starting to hyperventilate. The reality is that these used to be dressing rooms from back in the late 40's early 50's. I let out a huge sigh.

There are some interesting stories that I would love to share from inside East Germany, but this post is getting long, so I'll have to do a part II to this story. Needless to say we didn't want to smuggle the money back through and the only thing we could do with it is eat because anything we bought would have to match up with the exchange receipts we supposedly had from the East German bank. Yeah, that isn't as easy to do as it seems. We ended up tipping the bathroom attendant lady insane amounts.

When it was time for us to come back to West Berlin, we went through the building, handing each East German soldier at various windows our passports. Uncle Dave handed a soldier his passport, the soldier looked at it then sent him out of the building back towards Check Point Charlie. My mother went next but she stopped at the door, waiting for me. The soldier took my passport, but he wouldn't give it back. He put it to the side and started fiddling with his stool. My mother is still standing there and the soldier notices her and tells her she has to leave. She tries to explain to him that I am her daughter and she is waiting on me. He just says, "No you must go".

I get scared and start to tear up, thinking the soldier has just misunderstood. The soldier, my mom, and I were the only ones in the building. He walks out from behind the counter and "gently" pushes my mother out the door. That leaves me in there alone with him. He goes back around and starts working on his stool. I have no clue what was wrong with it, but he had it upside down, checking the legs and other stuff. By this time, I have definite tears rolling down my cheeks. I'm petrified, wondering what in the hell could possibly be going on. After about 20 minutes, which seemed like hours, a Russian soldier walks in, says something to the East German soldier. It didn't sound very nice. So they hand me my passport, the Russian soldier smiles at me, grabs my hand, and walks me out the door and up to the American soldiers at the check point. My mother is almost in hysterics by this time. She keeps asking me what happened. All I can tell her is "nothing".

At the time, I thought I was going to be traumatized for the rest of my life by that experience. In reality, it's become a really neat story to tell but you could never have convinced me of that back then. According to my dad, he found out that the East German soldiers just liked to harass American tourists and it was just my turn.

I hope you enjoyed my little story and I'm sorry that it turned out to be so long. I'll have to share the rest of it sometime.

Writing Her Own Pages

2009-11-05T21:53:00.001-08:00

Today was Taylor's appointment with the neurologist. That's nothing new. We've gone through 15 neurologists in 20 years. Only 2 of them were because we didn't like them. One of the ones that we kicked to the curb had the gall to tell me that at 5'7'' and 105 lbs, Taylor needed to lose weight. I think I stood there for a few minutes dumbfounded. What the hell? I'll have to share that story sometime.

We decided to start Taylor on the new seizure drug Banzel (rufinamide). This will be on top of the other 3 drugs she takes: Keppra, Zonisamide, & Clonopin. This drug was specifically made for the condition Taylor has, Lennox-Gastaut. She has started having drop seizures again and I'm hoping to stop those. The absence & complex partial seizures are bad enough without adding those. Before her brain surgery, the drop seizures caused a broken leg, several broken noses, a huge blood clot in her butt from falling backwards that had to be surgically(350cc's of blood removed + a drain for 7 days) removed, and other countless bruises and scrapes.

I was talking to the neuro today about Taylor losing some of her milestones. She is a sweet women and an awesome doctor. She genuinely loves Taylor. Anyway, she was telling me that for some MRDD patients, she thinks that it was just their time to lose some abilities…especially when she can't pinpoint another reason. However, with Taylor, she knows for sure that it's the seizures that are causing her to regress.

She said to me, "Taylor is living on precious time & she is writing her own pages". That sentence touched my heart. The combination of Taylor's medical issues is unique. The Trisomy 9p is rare not to mention that she was born with unrelated birth defects involving her brain, kidneys, & stomach. So yes, Taylor is writing her own pages in a medical journal, but I think there can be so much more to that statement.

Taylor is writing her own pages in this world. She is leaving her mark in her family's hearts & I haven't met many people who aren't touched by Taylor's sweetness. I do know that Taylor is living on precious (borrowed) time. Having the neurologist say it does make my heart skip a beat but I'm not going to start paddling down that river of denial now. I know that nothing will ever prepare me for the loss of my Taytiebug. I'm just going to enjoy each & every day of her precious time here on earth & keep hoping that she has much more precious time with us.

Sanitizing Police, Taylor, a Cow, & a Seizure

2009-11-02T20:39:00.001-08:00

Today was Taylor's port flush. She has it down at the infusion center in our local hospital. With the H1N1 flu going around, they have instituted some severe restrictions when entering the hospital.

No one under the age of 12 is allowed in the hospital at all unless they are the one being treated or tested. No one under the age of 18 is allowed in the Maternity area. When you enter the doors of the hospital, you are greeted by the "Sanitizing Police". (Please note my restraint in not calling them "Sanitizing Nazis".) You are required to hold your hands out for them to squirt sanitizing foam into.

Because Taylor was the "patient", I had to wear a name tag with the date of the visit written on it. Now, I'm not knocking these precautions in any way. I understand in keeping people as unaffected by this flu virus as possible. It was just a sudden shift as I was just at the hospital a few days ago.

The Bossman was nice enough to download my Halloween videos off of the camera and so I'm going to share one of Taylor, the cow, and a seizure. I missed the beginning of the seizure, but I think I caught enough of the one we call "the elvis" to give you an idea. She can have as many as a few hundred+ of these a day. It's funny how as soon as the seizure is done, she "says" something. We may not know what she is saying, but it's definitely something. The Bossman wonders if it is actually part of the seizure itself or if it's a coping mechanism for her.

Refusing to be Politically Correct About Disablities

2009-10-30T14:49:00.001-07:00

I've been meaning to write this post for awhile now. I just haven't been sure how to approach it. It's going to be very anti-pc. Of course anyone who reads my blog knows about Taylor and that she is profoundly developmentally disabled. That's a pretty long title but it is the politically correct way to describe Taylor. However, we who love her call her something else. No it is not the dreaded "R" word but I will admit that it is a variation of that one. It's one we find endearing to us.

Now, I realize there are going to be a lot of people that might be upset or horrified that I would use this word in talking about my child, but she is my child and I would never call anyone else's child by this name. I'm sure it helps matters for me that Taylor has no clue about the meaning of this word or even the above phrase…profoundly developmentally disabled. I'm just going to go with PDD from now on. Anyway, Taylor knows tone of voice. You could say the vilest curse words to her and if they were said in a sweet loving voice, she'd smile and laugh.

I'm sure you are wondering by now, what word could her family possibly be using that might offend you. Well, just the other day, we told Taylor that she will be the most popular tardy in her class today. I'm sure some of you sent up a collective *gasp* after you read that. Yes, I do use that word with my child. Partly because of the origin, which is too long to share with you on this post, but also to thumb my nose at everyone expecting me to keep up with whatever the most pc word of the year is when it comes to kids/people like Taylor.

Also related to the above issue is that, as The Bossman says, I do know how to play the "gimp card". Now before you really get angry at me, let me explain. The Bossman and I have been together for over 3 years now. 25 years ago, The Bossman was a cop in California. Unfortunately, an off-duty diving accident made him a paraplegic. I've never known him without the chair. Our first travel trip together really opened my eyes to how inaccessible things really are. We booked a "wheelchair accessible" hotel room. Guess what? We got to the room and The Bossman couldn't get his chair through the door. I was told by the front desk that "most chairs" can. I think I stood there with my mouth hanging open. Most chair? Seriously? His chair is less than the ADA required 36''. They were nice enough (insert sarcasm here because they kept telling us how nice they were) to open the room beside it because it had a wider door and let us use both rooms.

Since that trip, I refuse to have to do some sort of awkward shit just to spend the night away with The Bossman. When we went to a casino here on the Oregon Coast…they actually expected me to wheel him down a ramp, in the dark, without railings to keep you from dropping off a short cliff onto the beach, leave him there, walk around, go upstairs, open the main door, go in the room, unlock the back sliding glass door, and let him get in that way. No, I'm not kidding.

When the hotel receptionist told me that, I just looked at her and pulled out the gimp card (The Bossman's term) and played it like a pro. Needless to say, they gave us a suite in the tower with an elevator and a ramp to get in the building.

For those that think that "hey, you got upgraded without having to pay the extra $$", you're damn right. The problem is that I shouldn't have to "play that card". No one should. If you work in a hotel and you get a call from someone who says they are in a wheelchair and CANNOT walk, think about that when assigning rooms. Some think wheelchair means just having trouble walking…not completely unable to walk. We've had some think he could just stand for a second. Yeah…that doesn't really work well with a severed spinal cord.

Look, I don't expect everyone or anyone to understand my use of the word tardy when I talk about Taylor with family members or even when I'm talking to her. But it's my choice, my word, and it's said with more love than you could ever imagine. No, I don't say that word in front of others. Not because I think it's wrong, but because I don't want to make anyone feel uncomfortable or awkward.

This is just my world and I thought I would give you a glimpse of my total un-politically correctness. Feel free to disagree with me in the comments section. I welcome all respectful dialogue.

Now I need to do my "Yes I Did" Friday post.

Continuing Tales of a Bad Knee

2009-10-26T10:38:00.001-07:00

I just wanted to jot a quick note to my friends to let you know that I haven't taken time off from the computer…at least voluntarily.

Since my partial knee replacement a few years ago, there have still been some ongoing issues. My surgeon and I are trying what we can to avoid a knee replacement revision as that is a big surgery.

Anyway, over the weekend, somehow I managed to break the blood vessels in that leg and it turned blue and swelled up. It's also very painful right now. Oh the wonders of strong pain meds! So per the doctors and most importantly The Bossman's orders, I'm relegated to sitting on the couch with my leg propped up and iced for at least the next few days.

I just didn't want anyone to think I'm such a mental mess that I needed more mental health days away from the computer. *laughs*

My First Video

2009-10-24T01:30:00.001-07:00

Okay, so The Bossman got a new video camera. Today was the first time that I used it. I decided to take some video of Taylor after she got home from school. This is the only one I'm happy with unedited, since I'm still learning that.

Anyway, I hope you enjoy getting a glimpse of Taylor.

Yes I Did Friday!

2009-10-23T09:29:00.001-07:00

It's time for "Yes I Did Friday". This is the brainchild of Jeanette, so make sure you head over to her blog and link up.

Yes, I took a 10 day break from the internet, only using it for work and important emails. You could call it a "mental health" holiday.

Yes, I acted like a baby when The Bossman and I had a misunderstanding 2 nights in a row. Yes they were my fault and Yes I'm going to deny they were.

Yes I let my grandkids decide what they want to eat for dinner when I watch them even if it is cheese and crackers. It's a Nana's prerogative.

Yes I wrote "Dawn was here!" as graffiti on the inside of The Bossman's model train layout tunnel just for fun. (Third picture down)

I Just Needed…

2009-10-22T16:37:00.001-07:00

I've taken a little break from being online when I'm not working. I haven't written a post in awhile. I just needed the break. I needed to spend time reading my new book, "The Lost Symbol"…yes, it's a fabulous read.

I needed time to help the Bossman with his hobby, model trains. We had fun gluing the Styrofoam for the base of the mountain. I needed some time to play with my grandkids and have lunches with my daughter "B". I needed time to sit and snuggle with Taylor and watch her be silly. I needed to lay on her bed and watch her laugh hysterically at some new show she found on Nick Jr called "The Upside Down Show". If it has "slapsticky" type humor, Taylor laughs.

I just needed some time to enjoy the fact that Taylor isn't sick. Seizing? Always…but not sick. I needed some time to do nothing…to engage no one except the Man I love & the rest my family.

I just needed a break.

I will be posting a "Yes I Did" post tomorrow. After that, I'm going to try and introduce everyone to Taylor by catching her on video. I hope all my friends are doing well and I will be catching up on your blogs…I promise.

Thank you Won for checking on me. It meant a great deal more than I can explain.

The Rest of the Story

2009-10-12T11:38:00.001-07:00

Taylor the "Dog Whisperer".

Obviously, I've known about the "Trip to Holland" story that most parents of special needs kids get from someone after their child is diagnosed/born. However, I hadn't realized that there were other parts to it.

A new friend pulled a Paul Harvey on me and sent me "the rest of the story". Thanks Won…you made me cry. Good tears though. There was one part that just seemed to catch my heart.

"So many people think that they are the only one that arrived in Holland against their will, but there are more people than you might think, that have arrived unexpectedly. Too many look, yet only really see their own situation, but if you open your eyes and really see, you will find most everyone has visited some part of Holland at some time in their life. And when they want to find a quiet place of connection, many return here."

I have found that to be so true. There are times when I am so absorbed in what Taylor and I are going through, that I forget there are others that have walked in my shoes to some degree. I have never thought that my situation was worse than anyone else's. I guess I just didn't realize that there are more people who can understand my emotions if I just open my eyes and heart and let them in.

Thank you again Won for sharing that with me. I don't think I could ever find the words to tell you how much it meant.

Yes I Did!

2009-10-09T09:52:00.001-07:00

It's time for "Yes I Did Friday". This is the brainchild of Jeanette, so make sure you head over to her blog and link up.

"Yes I Did" ignore my daughter's phone call. I have specific ring tones for my daughters, click here to see how appropriate it is for them. Anyway, when I heard it, even though I knew my daughter was having a particularly rough day, I didn't answer it. I needed 10 minutes of peace. However, mom guilt kicked in and I called her back in 5 minutes. I do love her…honestly I do.

"Yes I Did" tell a customer to take their computer somewhere else to be fixed because he was being obnoxious. My man is a well-known and very trusted as a computer repair guy here in our town. We are so busy right now that I don't need to burden him with annoying customers.

"Yes I Did" listen in to a conversation in the doctor's office (well, you can't help it when you are sitting right next to people and they are talking loud). This family was trying to figure out what a certain drug was. You know I'm "almost a doctor" because of Taylor (inside joke certain people will get), I told them what the medicine was generally used for and then told them to discuss the side effects with the doctor.

What "Yes I Did" moments did you have this week? Join in…you'll have fun.

Trisomy What?

2009-10-07T17:38:00.001-07:00

Taylor @ 2 years old, 3 weeks after her diagnosis.

There seems to be an "Awareness" month for just about everything. Last month was Pediatric Cancer Awareness month. This month is Down Syndrome Awareness month. We have Black History month, Breast Cancer Awareness month…the list goes on and on.

Now don't get me wrong. I have nothing against "awareness" months. Unfortunately, my daughter has such a rare syndrome that she doesn't have a month. Well, actually she sort of does if we lived in Alaska.

Taylor has Trisomy 9p. I suppose we could tag along with the Down Syndrome Awareness month since Down Syndrome is technically called Trisomy 21. They both involve having an extra chromosome. It's amazing what having just one extra chromosome will do. In Taylor's case, it isn't even a whole chromosome…it's just having the extra p portion of the 9^th chromosome…which makes it even more rare than if she had the whole extra chromosome.

I hope no one takes this entry as me complaining about not having a month. This is just my nod to those of us with kids who don't have a popular or common syndrome. We don't have a colored ribbon we can put on our blogs or a celebrity spokesperson raising awareness. We get to do that ourselves.

What we do have is a close-knit community of parents who understand that we don't have anyone that understands exactly but each other. Taylor was diagnosed when she was 2 years old. Up until that time, we were out in limbo land. When we got the diagnosis, there wasn't sadness. There was relief. Finally we had a name. I guess when you know something is wrong with your child, it's no longer about hoping the tests are negative and more about hoping it gives you a name.

For those parents who have children that have any of the above conditions, please know that I'm not making light of them. These were just my thoughts for the day. My Taylor always has to be different and she just couldn't have a well known syndrome…she had to go for the rare.

Developing a Thick Skin

2009-10-06T16:21:00.001-07:00

I've had this topic on my mind for a few days but I wasn't quite sure how to word it. I was reading a comment on a forum written by a mom whose daughter had a birthmark on her face. She was upset that someone had thought to use that situation as an example of a distraction in a school setting. I'm not going to address that particular situation, just what it made me think about.

I'm sure that what I'm going to write about isn't considered politically correct and it may even upset other mothers of special needs kids. However, it's just something I feel led to write. Taylor doesn't look "normal" and she never has. Even when she was little you could always tell there was something different about her. As Taylor was growing up, we dealt with stares and rude comments and I will admit that my feelings would be hurt a lot. I would get angry and lash out at the insensitive or unfeeling person. Of course, it never made me feel any better but I always thought I needed to be outraged on Taylor's behalf because she didn't know enough to "feel the slight". So I felt it for her.

As the years have gone by, I realize that my desire to strike back at rude people has waned. I have read the blogs of some parents with disabled children in wheelchairs who watch for people that park in the handicapped parking spots. Even if these people have placards, this mother will say something if the person doesn't appear to be visibly disabled. I have a placard for Taylor. Is she in a wheelchair? No. So by that mother's standards, I shouldn't park there. To her, my daughter having seizures every few minutes in a parking lot shouldn't mean that we get to park closer. Are there people who park in handicapped spots illegally? Of course…but to demand everyone "look" disabled is ridiculous and shows that ignorance can be found anywhere.

I guess my point for writing this is that after 20 years, I've developed a thick skin. Maybe if my daughter could have hurt feelings or understood things, I would think differently. But she can't. So why should I waste one second on a negative emotion when I can just focus on the silly, happy, child that Taylor is. There are always going to be ignorant and rude people. Don't get me wrong. If someone is just downright ugly about Taylor right to my face, then yes, I will say something, but i've learned to let the negativity roll off my back.

I hope that I've worded this post in a way that people understand what I mean. Taylor doesn't need me to be outraged on her behalf. She doesn't give a rat's ass…so neither do I.

Take a Guess!

2009-10-04T10:08:00.001-07:00

This is my youngest granddaughter Ally. She is a gorgeous little red-headed angel. Okay, I'm Nana, so I can fib a little. While she is precious and I love her beyond words, she does have the temperament that goes along with the red hair. This is a picture her mother, my middle daughter, took of her.

I took this next picture of her after she put on my glasses. I want to know if anyone else can tell me the movie character she looks like. I don't have anything to give away, but I would love for you to leave a comment letting me know what character you think she looks like. I know who I think she looks like. *laughs*

Yes I Did!

2009-10-02T09:10:00.001-07:00

Jeanette started "Yes I Did!" Fridays.

Friday is the day to fess up to doing something that didn't exactly make us the brightest crayon in the box. To own the things we knew we shouldn't have done, but did anyway. Or to share something that we are proud of ourselves for accomplishing! So here is what I DID do this week…

I couldn't figure out how to start this post so I absolutely "borrowed" the above paragraph from Jeanette's blog. Okay, so maybe stealing would be a better word, but Yes I Did!

I most certainly DID tell my grandkids that the Nick Jr channel was going to sleep because it was the opening night of the NHL season and my favorite team was playing. I just had to change the channel. Of course, karma bit me in the butt as my team lost.

I let Taylor eat Apple Jacks for dinner the other night because there wasn't anything else she wanted. I didn't even put flaxseed on it or use organic milk.

I totally lost track of the fact that our business (home) opens at 9am and I was still in my pajamas when a customer came to the door. Good thing I'm a fast dresser.

I also spent so much time reading posts at OHIH, that I got behind in all my other work.

I'm positive that there are many other things I've done this past week that would qualify for this post but I just can't seem to remember them. It would appear that I'm going to have to start writing things down as they happen next week.

Sharing More of My Life

2009-09-30T10:53:00.001-07:00

It's been awhile since I updated. Things here have been a bit hectic. Thankfully Taylor is doing much better and she has been fever free for almost 24 hours. If she stays fever free that means school tomorrow!!!

Most of my friends know that The Bossman (my BF) and I run a business from our home. He's been doing computer repair in our town for many years, just for another company. We recently celebrated out 1 year in business anniversary this past July. It is a very successful business and I love working with him. I am definitely learning to get my geek on.

Anyway, yesterday was "totally weird customer" day. Most of our customers know The Bossman because he also teaches computer classes at the local community college. However, we do get our share of customers that just walk in off the street. Some of them defy description. They bring in computers that are running Windows operating systems from the early 90s. They get really upset when we tell them that Windows doesn't support Windows 3.1 anymore.

I thought this post should be a little more about my daily life instead of just all the bad news about Taylor. While this blog will still focus on life with Taylor, I just decided to start sharing a little bit more of my day to day life.

What a 2 Weeks!

2009-09-25T14:23:00.001-07:00

The past 2 weeks have seemed like a comedy of errors. So, we thought Taylor came through her surgery without any major issues. For the most part, she did. The pain medicine turned her from Princess Jekyll to Princess Hyde, but that was manageable. I'm not really sure why she reacted to the medicine this time as Taylor has had a lot of surgeries and painful procedures and been on strong narcotics before and not had any issues.

Then, we thought she was coming down with a cold this past weekend, so I took her to Urgent Care. They decided, after a chest x-ray, that she had a partially collapsed lung (not serious enough for chest tubes thank goodness) and the beginnings of bronchitis. We treated those symptoms with antibiotics. She seemed good to go with no fever for over 24 hours so I decided to let her go to school on Wednesday since it was early release anyway.

She seemed a little tired when she came home from school but nothing major. She did go to bed and actually fall asleep earlier than she usually does. Normally, I put her to bed, which means I give her snack and put her in her room where she will play until she falls asleep somewhere between 9 and 10:30pm. She is good about staying in her room unless she needs to use the restroom.

I always fall asleep on the couch while my better half works on computers until about 1 am or so at which time he'll wake me up and we go to bed. We happen to run a very successful computer repair business out of or home. He is very well known in our little town. Paul wasn't feeling well either so he had gone to bed at 10:30 so I just stayed on the couch. At about 2:30am, I woke up to the sound of Taylor coughing so bad I expected to see a lung when I went in her room.

I took her temperature and it was 102.4. Thursday morning, I called the family doctor and he saw her at 4. I was so not ready for a diagnosis of Swine Flu. I mean…really? Apparently, just as a precaution, when we were in Urgent Care Sunday, they had the IV nurse take a blood sample from her port and they also did a throat swab. I thought they were checking for Strep or something.

However, unbeknownst to me, they also were testing for the H1N1 virus. I'm guessing it was just an oversight that they didn't tell me because the doctors in the Urgent Care know Taylor very well and they are good with her and they always tell me what they are doing.

Her family doctor looked at the test results and told us about the Swine Flu. Apparently now, Taylor is the first one in the high school to have the swine flu so she is the wonderful reason for hundreds of those "a case of H1N1 virus has been diagnosed in the school so…" letters going out to all the parents. Yes, my child is special.

This flu is really kicking her butt. She was up most of the night either coughing or being really whiney because of body aches. It's really hard to know what hurts because she can't tell me. I just have to know the difference between a "pain" noise and a "I'm crabby leave me alone" noise.

She is spending most of the day in her room watching TV and reading her car magazines. She comes occasionally to throw her tub toys over the shower curtain and into the tub, then goes right back to her bed. I'll have to do a post on her obsession with throwing plastic toys into an empty bathtub.

Wow…this post ended up longer than I thought. I think I'm going to put my head on my desk ignore customers at the door…well, not really but it sounds good.

Sort of Wordless Wednesday

2009-09-23T15:24:00.001-07:00

My daughter got a job yesterday…starting today. She is working with developmentally disabled adults. Hmm…wonder what experience she has. *smiles* Anyway, I'm watching my 2 year old granddaughter until she can work out daycare. My grandson is in school. I work as well so it's hard for me to watch them all the time. Ally and her Aunt TayTay are basically at the same age level. However, this is Taylor's room and Taylor's computer and Taylor's Sesame Street Toddler computer game. Now while she'll turn it on and let Ally play, even giving up her chair, she will not let Ally have control of the mouse.

Still, they play very well together…it just reminds me of David and Goliath, just with a nicer outcome. Wonder why? I find these pictures to be totally precious and decided to share them straight off my camera without editing.

From Sweet Princess to Princess of Evil

2009-09-20T22:10:00.001-07:00

Taylor sleeping with the aid of Dilaudid after surgery

It has been a crazy week. Taylor seemed to come through her revision of the revision of the revision of the VNS surgery. Are you confused yet? In other words, in 18 months, this is the 3^rd VNS surgery she has had. I'm thinking this will be the last one…at least for 5 years. I won't even speculate if she will make it to the 5 years because I'm in denial of what the doctors are saying.

Anyway, after coming home, the pain medicine seemed to do a number on my normally very sweet child. She's had this medicine before since she's had a dozen surgeries so I'm not sure why the issues this time. I mean seriously…my affectionate, loving, sweetie threw lego bricks at me! She then layed on her bed crying and promptly fell asleep for several hours. After calls to the doctor and changes to her pain meds, she seemed a little better…until Friday.

She started coughing and running a temperature. We ended up going into Urgent Care this morning because her coughing made the incisions in her chest hurt worse. Now she has bronchitis. They also did a chest x-ray to make sure the surgery didn't cause a pneumothorax. Fortunately, while her lung is a little "under-inflated" (doctor's words), she didn't need to be admitted for a chest tube.

Why is nothing ever easy with Taylor? Why is a "simple" surgery never a simple surgery? Okay, sorry for being whiney. Taylor is just Taylor and after 20 years, you would think I would just accept the fact that Taylor does her own thing in her own time regardless how stressed it makes her mother.

This Elephant

2009-09-17T16:12:00.001-07:00

I was reading someone's blog and they asked what it was that reminded you of your child/children. When it comes to Taylor, I remember this elephant.

Taylor had just had major brain surgery in 2003. The day after the surgery, she had a stroke. She remained in the PICU, in a coma, for several days. Her older sisters, they were 19 & 21, bought her this elephant in the hospital gift shop. They laid it in the bed next to her. When she came out of her coma, she grabbed this elephant and she would suck on its trunk. I have no clue why, but to this day, it's the only stuffed animal Taylor will have anything to do with.

Since we have begun the process of planning for when Taylor leaves us, I have debated whether or not I will put the elephant with her or if I will keep it to hold on to when those moments come.

Wordless Wednesday

2009-09-16T16:56:00.000-07:00

Taylor and her sister on Monday.

Quick Update

2009-09-14T16:49:00.001-07:00

I just wanted to do a quick update. We got to the hospital before it was light out (6am) which is way too freakin' early. They started the IV in her port but don't even get me started on why a port that can't handle the fluids of surgery and tests was put in. At least the anesthesiologist knows Taylor so he doesn't mind sedating her with the port and then starting a bigger IV after she's asleep in the OR.

They were able to move the VNS without major issues and she was out of surgery after 2 hours. Taylor's doctor is really good about staying on top of her pain because he said that is going to be one of her major issues right now along with avoiding any post-op infections.

Taylor is lying in her bed, flipping the TV channels, drugged to the hilt. She is supposed to rest for the next few days but keeping her down is a hard thing. Right now, it isn't an issue because I think this pain is bad for her. Normally she has a high pain tolerance. If she just lays around, she must be hurting.

I took some pics and I will post them later.

Just My Opinion

2009-09-13T21:42:00.001-07:00

No matter how many surgeries Taylor has, I always find it hard to sleep the night before…even for those that are considered minor. Although tomorrow's surgery isn't minor, it isn't the same as her brain surgery…just somewhere in the middle. We have to be at the hospital by 6am. Don't you just love those early mornings?

You know, I follow various blogs and forums. It's amazing to me how some can engage in "my child's medical problems are worse than your child's". It just doesn't make sense. I've been dealing with a medically fragile child for 20 years. She has a lot of issues. Yet I don't discount those parents who are dealing with "so-called" lesser issues. It's my opinion that each person's problems or issues are as big to them as mine are to me.

Yes, my child has severe medical issues yet I chose to consider myself lucky because she has a sweet and loving nature. She doesn't have behavioral issues. Why can't all the parents of children with special needs lift each other up instead of saying your problems aren't as bad as mine.

Okay, I guess I need to shove the soapbox back under the bed. Can I claim the stress of tomorrow's surgery for making me rant?

One More Thing

2009-09-10T21:02:00.001-07:00

Today was Taylor's pre-op appointment this afternoon. Of course, because it's Taylor, nothing can ever go smoothly. The doctor was feeling her neck when he looked at me and asked "what's this".

Well, I started looking and I noticed something I've never seen before…she has a lump near where her esophagus is. The doctor thought maybe it has something to do with her thyroid. Then he thought that maybe it was just her esophagus that was "moving around". He finally decided that this is something that is going to require an ultrasound.

You know, I pay really close attention to Taylor and I'm always looking for things that have changed or could be wrong because she cannot communicate those things to me. I just didn't notice the large lump on her neck. I guess it's a good thing that one of the surgeons is an ENT specialist. He said he'll order an ultrasound and we will see what's going on.

I just don't think I can handle "one more thing". I know that sounds bad because technically, I'm not the one that has to deal with it. Taylor does. She's the one that is going to have the pain from surgery on Monday. She is the one that has to undergo test after test…procedure after procedure.

I guess I'll do what I always do…stay strong and do whatever I can to make Taylor comfortable and happy…you know, the MOM thing.

Surgery is Scheduled

2009-09-02T17:42:00.001-07:00

Taylor & Daddy @ the Circus

The surgery has been scheduled for September 14^th. We have all the pre-op stuff going on next week. At least the surgeon is having the blood drawn when they do Taylor's port flush on Friday. I am not really worried about the actual surgery. Goodness knows Taylor has had a lot of surgeries. I suppose I should post a list one day.

This VNS implant has caused problems since the unit was replaced in 2007. Now, this surgery is going to take 2 different surgeons and 2 separate incisions to complete. The ENT surgeon says that their biggest hurdle is moving the unit to another place on her chest without messing up the wires. His actual words were "wreck the unit". If they do that, then he will just clip the wires attached to the vagal nerve, remove the device, and close her up.

We will then see if she seizes even more than she does now. If she does, we get to go for our 5^th "VNS only" surgery and start all over again…this time, with the implant in the spot it should have been in 9 years ago. Okay, so I'm not as bitter as I seem. I realize that 9 years ago, Taylor was one of the first pediatric patients to have the device. It was also implanted by a neurosurgeon. He was only doing what he thought best.

Taylor has a very high pain tolerance. However, this surgery is one of her more painful ones. She recovered from the pain of brain surgery 10 times faster than did from the VNS surgeries. I'm sure the fact that they are cutting the same scar from the first surgery for the 3^rd time doesn't help.

Yes, even after dealing with a medically fragile child for 20 years, I still have "why" tantrums. I don't think that will ever go away. I think you just learn to adapt after so long and those moments come less and less. No matter what though, there will always be those kinds of days in the future…it just comes with the territory. Otherwise, I'd be in the padded party room with other moms/dads of special needs kids.

Seizure Salad

2009-08-27T21:58:00.001-07:00

I'm sure you are probably wondering about the title of my blog. I have always dealt with things using humor. It just makes things easier for me. If I don't laugh, I'm going to cry and laughing happens to be more fun.

The phrase "seizure salad" came into being thanks to my brother. Years ago my brother took my girls and I out to dinner. I was a single mother trying to raise three girls, work full-time and deal with Taylor's ever increasing seizures. Taylor was having a particularly bad seizure day. She also happens to love salads. She won't eat cakes, candy, or other sweet things but she will devour a salad.

Anyway, the waitress came to take our order. As she went around the table asking everyone what they wanted, she got to Taylor and asked what she wanted. In the middle of asking that, Taylor decided to have a huge seizure. Without skipping a beat, my brother told the waitress that Taylor wanted a "seizure salad". She kind of looked at us and asked did we mean "Caesar salad"? My brother said no, for her, we call it a seizure salad.

Needless to say, we all started laughing hysterically. I couldn't help it…it was funny. The waitress laughed for a second then I guess she felt bad for laughing even though we told her it's okay it's how we deal, she wouldn't wait on us anymore. She was angry that we made her laugh at that.

So now, when Taylor has really bad seizure days, we call them seizure salad day. I'm sure that is not as funny to everyone else as it is to me, but it still makes me chuckle thinking back to that day.

It's been a rough day for Taylor today. All her seizures were big one and they just kept coming. She couldn't even enjoy the park when her sister took her today. Normally Taylor loves to swing, but not today. She just sat on the bench, seizing away.

I've decided that in the next few days, I'm going to write Taylor's complete history from birth until now. I think it will be better if I break it up into parts. It's just all in my head so it will be nice to have it written down in one place.

A Long Story

2009-08-25T21:29:00.001-07:00

Taylor right before getting her PICC line.

We are going through another VNS issue. Taylor had the Vagal Nerve Stimulater implanted way back in 2000. She was 11 years old. Taylor has Lennox-Gastaut so her seizures have been very hard to control. She has Trisomy 9p which has left her profoundly developmentally delayed. When the neuro-surgeon thought it would be a good idea to put the device under her breast tissue for cosmetic reasons, I thought that was nice. I wasn't thinking about her as an adult female and realizing that she didn't really need that area to be cosmetic. No one was seeing her there but me, her sisters, or a healthcare provider. I just wanted to stop the constant seizures.

However, that decision has come back to haunt me. In December of 2007, Taylor's VNS battery needed replaced. Now an ENT does the procedure because he is more familiar with the neck. He was not used to having to dig in breast tissue to retrieve the unit. They are now placed in the chest like a pacemaker.

Not to be crude, but Taylor is about an A/B cup so she doesn't have a lot there to begin with but the surgeon still had to dig around to retrieve the unit and replace it with a new one. They just hook up the old wires to the new VNS. They don't really unclip the wires from the vagal nerve. He finally finished the surgery and closed her up. He used the original incision site from 2000…he didn't have much choice. Well, a few days after surgery, we noticed that Taylor's surgical site and breast were swollen and very red. It was the weekend so I took her to Urgent Care. They took one look at it and sent us next door to the ER. They said it was post-op infection and Taylor needed IV antibiotics. Now, Taylor's veins are pretty well shot because of so many surgeries/blood draws so it took 4 different people 7 sticks before they got a vein. They finally got an anesthesiologist to get the IV in.

So, home we went with a hep-lock and orders to return to the infusion center for the next 10 days for IV antibiotic therapy. Monday when we went to the infusion center, they saw how bad Taylor's veins were and called to doctor for an order for a PICC line. Anyway…the PICC line was a success and we spent the next 10 days making daily treks to the hospital…including Christmas Day. She ended up keeping the PICC line for several months which as it turned out was a good thing.

Several months after the initial surgery, I was getting Taylor dressed when i noticed that something wasn't right about her chest. To my horror, the VNS implant had fallen down in her chest and was now pushing on the scar. We made an emergency appt. with the doctor and he was horrified. He scheduled an emergency surgery to try and fix it so it wouldn't pop out of her chest. He did his best to try and shove it back up and make a pocket for it above her breast tissue. That was last year.

Here we are again. It's now fallen again and the doctor is in the process of scheduling another surgery. He wants a general surgeon to help with this one. They are going to go in the previous incision, disconnect the wires, pull them up in her chest, and make another incision where the implant should have gone years ago…below her collarbone and put it there. The doctor says there may be a chance that they "wreck" the implant or the wires not go where they want them to. In that case, they will just take it out, clip the wires and close her up. If they find that the VNS was helping her seizures at all, they will schedule another surgery to try again with a new one. At least now, she has a port.

Now, when it was first implanted back in 2000, it never worked for her. Her seizures continued to get worse. In 2003 she had a corpus callosotomy. Of course, being Taylor, she couldn't do anything easy, so she had a stroke the day after surgery. Of all of Taylor's medical issues, her seizures have been the most problematic. She is diagnosed with intractable seizures(Lennox-Gastaut)…nothing has worked so far.

Sorry for the long post. It's just been long overdue and I needed to get it all out.

Happy Birthday Taylor!

2009-08-18T19:43:00.001-07:00

Taylor turns 20 today. I've learned a lot more about medical issues than I ever wanted to know. I've shed more tears in the 20 years than I ever thought possible. I've spent more nights in a hospital in the past 20 years than I ever thought possible. When you add the total number of nights that I've spent sleeping on an uncomfortable, vinyl pull-out couch in a hospital room listening to the beeping of monitors and IV pumps, it totals over 3 years out of the past 20.

However I'm not going to talk about that today. I'm going to talk about the smiles she's given me. No matter what problem comes up, Taylor smiles through it all. I've seen her fight to re-learn how to walk and talk (well Taylor talk) after suffering a stroke after brain surgery. She wakes up in the morning, smiling. She is the most loving and affectionate "child" I've ever known.

Taylor is funny, silly, happy, loving, strong, resilient, and stubborn. She has been the major focus of my life for the past 20 years. People around town know me only as "Taylor's mom". She has touched the lives of a lot of people.

To me, Taylor is hope and I choose to celebrate the good today. Happy Birthday precious girl! We love you!

The Place I’m At

2009-08-05T11:36:00.001-07:00

I've really put off writing this post here. I guess because it feels like I'm giving up on my child. I would like nothing better than to bury my head in the sand and say that everything is just fine and Taylor's seizures aren't quickly taking her away from us.

None of the medicines, not the VNS implant, and not the corpus callosotomy has taken away the seizures. The brain surgery did stop the drop seizures for about 4 years and for that I am eternally thankful. While the hundreds of absence & complex partial seizures she has continued to suffer from have not been great, they have actually been more of an annoyance than anything else.

All that is changing now. She has started having more and more drop seizures and some days, it's just too hard for her to function. We've watched her lose abilities and become unable to do some of the things she used to do. She can't carry her food/drink to the table any more for fear of dropping everything during a seizure.

We've been told that it's probably best that we try and plan "things" now as it will too hard when the time does come. I always thought her heart defect would eventually be what caused her the most life-threatening problem. No, it's going to be her brain. That part of Taylor that makes her the happy, loving, funny, silly person that she is will eventually be what takes her from us.

I realize that no one knows the future and Taylor could outlive me. I also know that the signs I'm seeing now tell me that I need to cherish every day I have with her, knowing that one day, in the near future, she could just slip away.

I'm torn between pestering the neurologists for something that will help and not filling up what could be a short time left here with tests, needles, and doctors.

Yeah, so that's where I am right now…torn between reality and denial. I think I like floating down that river better.

An Unexpected Trip to Holland

New Blog

An Example

Sometimes It’s Hard

An Update on the Mom

Throwing Tub Toys & a New Haircut

Respite Care Rocks!

One of These Feet is Not Like the Other…

Happy Birthday Sweet Girl!

Pictures

Long Overdue

Courage

Life At This Moment

Feeling Like an Outsider Sometimes

The Puppy Whisperer

So Much to Say…

Computer Avoidance

There Are Still Some “Firsts”.

Anti-PC Post Ahead…Proceed with Caution

Mothers Lie

Summer Fun Video

Sisters

Come to the Dark Side

Happy 21st Birthday Taylor Marie!!!

Reflections on the Past 20+ Years

My Funny Girl

Hair Washing Hell

Not Alone

Still Shaking

Taylor & Barney

Gummi Worms & an Update

My Baby is a High School Graduate!

Tonight’s the Night!!!

Memory Lane

A Day Out Bowling

Sharing an Awesome Post

Stubborn Girl

*YAWNS*

Changes

Anticipation

Taylor at the Prom

Overdue Taylor Update

By the Way Doctor, I Forgot to Mention…

Bad Blogger

I’m Home!!!!!

Dawn is in the hospital

What’s Been Going On

Revisiting a Poem

In Loving Memory

Goodbye Nathalie

A Case of the “Why Me’s”

A Great Christmas Present Reaction

I’m Still Among the Living

Taylor vs the Canned Goods

Taylor & the Train

Busy, Busy, Busy

Decking the Halls

Perfection is in the Eyes of the Beholder

Waiting

Frustration

Gum…The New Asthma Medicine.

Yes I Did…Just Have a Pity Party

Conundrum, Thy Name is Taylor

Sometimes…& Seizures Suck!

A Tale of 2 Berlins

Writing Her Own Pages

Sanitizing Police, Taylor, a Cow, & a Seizure

Refusing to be Politically Correct About Disablities

Continuing Tales of a Bad Knee

My First Video

Yes I Did Friday!

I Just Needed…

The Rest of the Story

Yes I Did!

Trisomy What?

Developing a Thick Skin

Take a Guess!

Yes I Did!

Sharing More of My Life

What a 2 Weeks!

YAWNS