Sunday, September 2, 2012

What would you say...

When blogger, Elizabeth, who writes beautifully about her daughter Sophie, asked for parents of special needs kids to share a note and photo for a video of what you would tell yourself on the day your child was diagnosed, I knew exactly what I would have wanted to tell myself.

You'll see my answers in the video, but today, I would add to will never believe how little sleep you can live on.  You will never believe the amount of drugs you will put into your child.  You will never worry, or feel so helpless, so much in your life.

Max had a really rough night last night, but has slept the day away, and is sleeping again tonight.  He has been weaning off of the anti-epileptic that carried him through his long hospital stay, but he does not need to be on at home.  It's his rescue medicine, so we can't let him get used to it.  Unfortunately, he sometimes does get dependent on it, and he's a hot mess coming off of it.  Last night, we had sweats, and moans, and writhing, and shaking.  We finally had to give him medicine to stop all of that in the early hours of the morning, so he would sleep, because no sleep = seizures.  It's a double edged sword.  Hopefully we will see our bright eyed boy again tomorrow.

Here's the video...thanks Elizabeth, for adding my photos.

1 comment:

Elizabeth said...

Your photo is the one that makes me openly cry. I am so glad that you participated and your added "notes" are perfect. Although it's gotten better in the last five years or so, for the first ten years of Sophie's life, we rarely slept. I really don't know why and how I'm alive at all! I do hope Max gets weaned from his medicine -- I know how difficult that can be and wish him peace and ease.