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.