Sometimes It’s Hard

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!

Long Overdue

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.

Feeling Like an Outsider Sometimes

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…

So Much to Say…

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?

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.

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.

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.

Taylor at the Prom

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

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.

Bad Blogger

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*

Taylor vs the Canned Goods

*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.

Sanitizing Police, Taylor, a Cow, & a Seizure

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.

My First Video

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.

I Just Needed…

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.