I have a daughter with special needs. She’s 12 years old…her name is Lizzy…here she is…
She has a rare form of Down Syndrome called Mosaicism or Mosaic Down Syndrome. I know, I know, you weren’t aware that there are any ‘forms’ of Downs, but there is this one. It means that only some of her cells are Trisomy-21 (which causes Downs) instead of all of them.
She’s an amazing girl. She’s funny, she’s smart, she’s outgoing and friendly. She loves horses and she is an amazing vaulter (a special kind of riding where they do artistic routines while riding on the back of a moving horse) Here are some pics to help you understand…
Adults LOVE her. Kids are mean to her. It’s very sad. She has one really good friend, and that’s good. There are a couple of kids at school that will be kind of nice to her, but most just ignore her. They don’t understand her. She’s so high functioning that, instead of being obviously Downs, she comes off as just awkward and weird.
She bites her nails until they are too low to bite. She also bites her lips so she gets sores that make her mouth hurt. She has a lisp, she wears glasses and she doesn’t care much about social ‘graces’. None of these things are great for a 12 year old girl, about to enter Middle School.
I worry about her a lot. And, to be honest…bluntly honest…I feel ‘heavy’ for her and, selfishly, for me too. I sometimes forget how heavy I feel….I get used to it I guess. Until something reminds me.
Lizzy went to camp with the middle school youth group from our church this week. She was gone for 5 days. I missed her and worried about her a bit, but I knew she’d find an adult leader that would love on her, so I knew she’d be fine.
When I picked her up today, she walked off the bus, and my first thought was ‘she is a total mess’. She was filthy (she had only showered once all week because the water was cold). She looked exhausted. She had a big scab on her chin (looked like she fell on gravel), but she said she has no idea how she got it. I saw her trying to talk to a few different girls, and I saw them completely ignoring her. She gathered her stuff…her backpack, duffle bag, sleeping bag…and I gathered up my ‘heaviness’ and we got into the car.
She had a great time at camp. She, of course, met a leader who she loved and who loved her back. She hung out with a couple of girls from school, and “they ignored me sometimes, but mostly they were nice.”
And I’m heavy again. I hadn’t realized the lightness of the week, but I realize the weight when it returns. Don’t get me wrong, I LOVE my Lizzy with all my heart and soul, and it’s because of that love that there is also a tension…a weight…that I live with. I want others to see in her what I see. I want her to “fit in”…not in an unhealthy way, but just in a happy, friendly way. I want to teach her certain, appropriate ‘social graces’ without belittling who she is, or making her feel like I don’t think she’s good enough. I just want to help her.
So, no big revelations…no big spiritual insights in this post today. Just my thoughts about my lovely girl.
If you have a special needs family member or friend, tell me if you connect with this post at all.
If you don’t, please don’t tell me…
“God loves her more than you do” or
“You should give all your worries to God” or
“It’s better if she doesn’t fit in because fitting in isn’t what’s really important” or
“Some people go through life with only one or two friends and that’s okay”.
I know all those things already…I really do…and I believe them. But my heart breaks for her none-the-less.