Right now I am doing my student teaching at a school that I absolutely love, but for a year and a half before that I was a para (student aide) at a completely different school/district. I worked with many students during my time there but got to know all of the kids in Special Ed as well as most of the kids in the grade level that I was in.
Today, I got some of the most devestating news, one of the first graders at my old school passed away last night. There was some internal bleeding while he was at daycare, so he was rushed to the emergency room. There, they got him stablized and he was having a great time watching Spongebob, a favorite of his. While giggling and laughing, he had a seizure which they never woke him up from.
His official diagnosis was epidermolysis bullosa a.k.a. butterfly syndrome. It is an extremely rare skin disease where his skin was so fragile that it would literally tear, just like a butterfly's wings. About 90% of his body was covered in bandages/gauze because he was so fragile. Any type of friction and his skin would blister and rip. He was in constant pain and couldn't even enjoy everyday things like licking an ice cream cone. He had to be rebandaged every other day and had to take baths in bleach to clean out his wounds.
I know that his life was miserable and I'm sure he's playing catch while eating all of the ice cream that he can right now, but I am still completely shocked and saddened by this. Just this past Saturday, they had a benefit for him and his family where they raised $30,000 for care and a new home for them. He was being raised by a single mother with two other children. They had recently lost their apartment and were living with friends. It was just starting to look up for them, with this money they could put money down on a house, not worry about medical care for a while, among other things. I just don't understand why it happened now.
And you know how people are supposed to be really calm and happy when they are about to die? That totally happened. Yesterday, he was at school and just in great spirits. Obviously, he wasn't always the happiest kid, because he was in so much pain, but yesterday it was like there was no pain at all. And it makes me glad that he actually died laughing and giggling and he didn't have to suffer.
When they went and told the other 1st graders today, a boy who has already lost a brother of his own was trying to lift spirits and said "Well, now he's in heaven with new skin and he's probably playing catch with my brother right now."
Sorry that this was a rather sad post, but I felt like I just needed to get it all out.
EDIT** Sorry if I was unclear, but they did know about the disease, he's had it his whole life. What they are saying is that he actually died from internal bleeding and a seizure.
Death is hard especially when its with children involved. That said, these types of things teach us that life is too short and one we will all disappear. But these moments do teach us lessons and we need to find that lesson whether we want to or not.
ReplyDelete=( How come they didn't know about the disease before hand? This is very sad. I hope his family and friends are all coping and doing well.
ReplyDeleteI am so sorry to hear about your little friend.
ReplyDeleteI lost a former student before too. The wake was hard, but seeing his mom at so much peace really helped me. I hope you experience the same thing. This post made me realize that I am so lucky to have a healthy little boy.
ReplyDeleteI gave you an award today! (what goes around...comes around!) Have a great day.
ReplyDeleteSo sad! I'm so sorry you lost this little friend. I teach Kindergarten and have often thought about what in the world i would do if I lost one of the them- I can't imagine. You're in my thoughts!
ReplyDeleteIt's very sad that any child has to suffer like that. And it is very sweet that he got to enjoy his last moments.
ReplyDeletewhat a great blog! i just came upon you this morning and love what you have to say! i was a para for a year in SPED and it was the most challenging and rewarding thing I have ever done. i hope that the rest of our student teaching goes well!! i will do that here eventually! :)
ReplyDeleteYou kids amaze me. Really though all kids are blessedly insightful.
ReplyDeleteThis post does however remind me of why I'm not Special Ed; it physically pains me to see my students in pain (unless of course they deserve it).
Still you have to be glad that he had the life he was given for the time period he did and that he is no longer suffering. Let him enjoy his new skin.