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.

The Place I’m At

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.