Computer Avoidance

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”.

          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

 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

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

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

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

 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!!!

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

 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

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

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

 

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

       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

 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

        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!

 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!!!

 

 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

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

 

 

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

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

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*

 

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

 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

 

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!!!!!!!!!!!!!!!