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!

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…

Wistfulness

I've been doing a lot of "blog hopping" lately and I've come across some wonderful blogs. I wish I had known about blogging, or even computers back when Taylor was born. I would have loved to have chronicled our journey from the very beginning.

Alas, I did not enter the computer age until relatively late in my life...2001 to be exact. I didn't learn about blogging until a couple of years ago. Now I know more about computers than I really want to know. *laughs*

Taylor has had so many surgeries and so many procedures and they are all in my head as well as the entire list of seizure medications we've been through. However, I don't have a recollection of my day to day emotions when Taylor spent most of 2003 in the hospital…first because of nonstop seizures, then the brain surgery, followed by the stroke, with inpatient rehab at Children's Healthcare of Atlanta.

I remember bits and pieces from that time. I remember all my belongings in storage because there wasn't enough money to keep an apartment and stay at the hospital. Let's face it…I lived at the hospital anyway, so why pay rent when you can sleep on one of those "oh so comfy" parent couch/beds?

I've also realized that as Taylor gets older, I've become less aggressive with trying to find cures and treatments. It's not that I don't want my child to be healthy. It's more because I know that my child is medically fragile. She's had 20 more years on earth than anyone said she would. I don't want whatever time she has left to be filled with needles, tests, surgeries, and drugs. It's bad enough taking her once a month for her port flush.

Sometimes I wonder if I'm being a bad mom. There is that selfish part of me that wants my child here with me forever. That conflicts with the part of my mom self that just wants my child's life to be happy. Taylor has very specific things that make her happy…her mp3 player, throwing toys over the shower curtain and into the tub, playing Sesame Street Toddler on her computer, being able to lay in her bed and flip channels on her TV with her remote, caffeine-free diet coke, and going to school.

That's Taylor's life and I don't want to inject doctors and hospitals in there unless I absolutely have to. The biggest thing I would love is to take Taylor's seizures away. That is what interferes with her abilities. Unfortunately, her brain keeps finding ways to seize no matter what we do.

I thank God every day that he gave Taylor to me. She is loving and happy and that's all we can really ask for our kids.