One of these blogs is called Be Still and Know. Kris is a mom, and a doctor, who has an 11 daughter with Nonverbal Learning Disorder. She writes very candidly and right from her heart. She speaks of all the emotions, the raw emotions that we have felt over the years ... the good, the bad, and the ugly. It's very refreshing. I find myself nodding constantly as I read her posts about her daughter.
A couple of days ago was one such post. I'm going to quote here here:
" i've had 2 other kids over and bryn has stopped napping. so i sent jude and his friend to the friends house down the street - so now it's just lily and zoe and bryn- playing the wii. and while this brings some quiet to the house, i can now hear much of the conversation between zoe and lily- which makes me crazy in a different way. in a sort of sad way.
when i have zoe alone, or with her brothers, she is just zoe- in all her glory and all her challenge- but she is zoe out of context. zoe timeless and ageless. when she is with lily, she has bookends. there is comparison. and all the progress i reported yesterday is buried beneath the glaring difference between her and her neuro-typical friend. i see what it would be like to have a typical 11 year old- who make their own pot stickers for lunch, and can go down the street to buy something you forgot at the market, who can explain the rules of a new game, who doesn't hit someone when she loses the game, who doesn't sit and talk to her little toy dog over and over again. who has a mature conversations with adults.
but the hardest part is not hearing them laugh and tell secrets and make memories together- not sharing in the joy that i had growing up with lily's mom. "
It was an ah-ha moment for me. Yes! I totally get that. Although Matt is 20 now, I still get that. When we're home and it's just our family, Matt is who he is. We know his limitations, we know his strengths and weaknesses, we know his inability to get everything that is required to socialize and we all function very well in those peramiters. We're in our cocoon. We're insultated from expectations of society. We're happy, and he's happy.
However, when we get Matt with others, everything changes. We see him in the context of other people his age. It makes me very sad. It makes me sad to see what he will never be. It makes me sad to see the look of anxiety on his face as he tries to understand what comes naturally for the rest of us. It's painful to see that he will never have the kind of social experience that neuro-typical 20 year olds have. It makes me sad to know that he would much rather return to his cocoon of the house.
I know he would like to have friends and be able to hang out and laugh with his peers.
I also know that he's OK with who he is, and with having Nonverbal Learning Disorder. He's happy with himself, and so my sadness is my own. I think I too, prefer life in our cocoon. It's a much happier place.
On another note, how do you like my new blog header? My friend, Joy, made if for me. Isn't it gorgeous?