I have found that wading through this new and often foreign world with Cary Lynn that there is only so much that the rest of the "normal" world can stand.
When we first got Marvin everyone remarked on what a miracle he is. How special he is. How it is great that you just "can't tell" that he is different. Not that I was shy about sharing. I think that it is important to let people know that abuse is real and out there. But because he "passed" and looked and acted "normal" no one seemed to mind.
Enter Cary stage left. I am equally open about her. But the reception I get from most is very different.
You see Cary can't "pass" as a "normal" child. She looks different. Her eyes don't focus on you. Her facial expressions are a bit different. She slumps, can't sit on her own, and her head and facial features are different. Not big neon sign different, but enough to get questions and funny looks.
When people first asked about her, just like Marvin, I would begin to share. But unlike Marvin a lot of people start getting overwhelmed. I have found out that even though they may ask most really don't want to know. I understand that it is a bit overwhelming, but you do not have to live with it every day. I do.
So I have found out that there is a lot that people don't want to hear. But that does not mean that I do not have a lot to say. I have plenty. That is part of why I blog. It lets me say it.
People don't want to hear that my child has disabilities. She does. So does my son. So does my husband. I have learning disabilities. I cannot pretend they do not exist, wish them away, or pray them out. They are there. To deny them would be living a lie and being a fool. I prefer to confront them head on and deal with it.
People don't want to hear that Cary has a lot of doctor's visits and still requires a lot of extra care. I hear advice on how to help her grow out of it, herbal treatments, once again praying hard that it will "go away", and all sorts of really stupid things. People just want to hear that she is getting "well" and doing better. So I have just learned not to say too much. I tell people what I think they want to hear. Don't get me wrong, Cary is doing better. She has discovered that food is tasty. But unless you know me really well and know what to ask me you won't be getting a lot of extra information out. I have had my feeling hurt a bit too much lately to become an open book.
People don't want to hear how much it hurts me that I don't get to do the stuff that regular new mommies do. New mommies get baby showers, lots of visitors, balloons, and all that jazz. I got to spend it in the hospital worried that my daughter wasn't going to live. Don't get me wrong, I don't NEED a baby shower. We were going to have a meet and greet for Cary, but she was hospitalized. I just mourn that I don't get to do the same stuff that others get to do. It is hard to be different. No one wants to listen to me spill my guts about it either. They figure it was my choice to take this on and I should just have a stiff upper lip about it. It WAS my choice. But I have feelings too. And they get hurt really easily. I am a softy who cries at commercials that involve toilet paper and basic household products.
People also don't want to hear how hard it can be to be the parent with "that" kid in groups. It takes a lot of guts for me to do regular stuff. I went to a story time today and got teary looking at other one year olds. Not that the moms and the lady who ran it weren't perfectly nice. They were. Plus Cary loved it. But it is hard for me to see other kids and wish that my kid was up and running. Or crawling, heck I'd even just settle for her destroying books like the other babies. It takes a lot of guts to be that parent. But I can't avoid every social situation in the world. Cary has the right to enjoy things her peers do. She can't live in a box and she wouldn't be happy that way.
Things need to be said. Words left trapped and left unspoken can really drag you down and eat you up. Feelings left bottled up make you feel rotten. So I write. In hopes that someone hears what I have to say. In hopes that there are still people who do care. In hope. Because that is what carries me towards the next day. Hope. Hope that things will be better. Hope that I can make a difference for my daughter and others who have to live the life I live. Hope. A powerful and wonderful word.