Wednesday, March 20, 2013

Typical Vs ?

I was going to write this killer post about the intersections of race and disability. It was going to blow your minds. I promise. But then life just kind of got up and shit on me. Well more like puked on me. Since I'm trying to post every day and kind of got lost after our hospital stay and then even more lost while H was gone and my anxiety took over...I thought hell I'll photo bomb everyone instead...and well it just kind of tuned into this story because you know me, I like stories.

Last night started pretty awesome. I was coming off a good Park Day high (minus one incident that is kind of eating at me). It was lovely out yesterday and Jude totally digs being outside. So yeah, we were all chilling out together. There was little of the usual stressed out crap that happens at night around here, and I took some sweet shots of the big girls with Jude.

I'm always really moved with how much the big kids love her. And I had one of those awesome moments when I just kind of fall in love with her even more. It happened with all the beasties and still does. I always feel love but every once in a while a moment happens. This kind of hard shining moment when my heart feels like it's just going to stop because the emotion is so intense. Everything stops and it's just that baby/child there...and it's a moment wrought with joy and fear because to love that hard, that much is always a bit of a scary thing.

And then 1 am happened. I was finally sleeping. I don't sleep well ever and even though Jude sleeps better than any of my babies ever have...well she's still a baby. So I am restless tossing when through my sleep haze, I can hear Piper sobbing. She's been weepy all evening but I chalked it up to her being exhausted. She had a failed sleep over and had come at around 2 am the night before. Then she did a fair the next day. She was beat and clearly over emotional. But this crying was different, panicked sobs and frantic breathing. She was having a panic attack. It was a bad one. We hadn't had one this bad since she started having them a year and a half ago.She thinks she can't breath and starts to freak out that her heart is stopping. 

 H is awesome and talked her down. He had her imagine something that makes her feel good, and had her hold onto that image until she felt calm enough to talk. Her image? Holding Jude's hand.

As she starts to talk, she reveals how worried she was when Jude was in the hospital, and it's clear she's scared Jude is going to die. Of course she's also scared that we're going to leave forever too. She just wants us to all be together. And I can't help but be moved that she feels this connection to us (maybe without a little pathology of course). We talk to her about how incredibly healthy Jude is and that even in the hospital she was never in danger. And I think again about how scary love can be for all of us. There are no guarantees really so every time we love we take a risk.

We finally get her calmed down and eventually she goes to sleep. I'm awake of course at this point so I gorge myself on low fat popcorn and fluffy YA fantasy literature. I lay down to go to sleep around 2:30 and of course Jude needs to nurse so I feed my sweet baby, and snuggle her some more. 

And then Rowena pukes on me...well that came later but still. Barf. All over my sleeping body. Luckily I shielded Jude. I drag myself up and clean up the barf. Of course R has puked about a dozen times already, and she refuses to puke in a pail or on the floor. She was puking all over self but then she started to carry a towel to puke on which is just gross. It's all mucous so I'm not sure if she's really sick or just has allergies. It's gross anyway.

As I wrote this post, I was thinking about the move for inclusion and acceptance...and a lot about this post written by The Unknown Contributor. It was so spot on and as I'm cleaning barf from every surface of my house, and worrying about my sweet sensitive seven year old, I realized that NOT ONCE TODAY HAVE I THOUGHT ABOUT DOWN SYNDROME. NOT ONCE. Right now? Today? It's the least of my worries. Hell she's the only one who's behaving. Inclusion and acceptance have to do with both understanding that our kids might have more needs that need to be meet (aka why we need funding for medical research and education) but also that our kids are just kids. Yo, parenting is hard ya'll. It's clear when you read about the people who abuse, abandon, or murder their own children (not that I feel that way don't worry just pointing out that you know "God doesn't always give special kids to special parents.") I have friends who are struggling with life threatening allergies. Others are dealing with Asperger's and Autism. Some have kids with cerebral palsy. There's people who have kids with anxiety disorders and OCD. And then there are just kids who don't have anything you can point to in a book but they still have shitty days where they yell, tantrum, or puke all over you. 

What I'm saying is that there are days when Jude's DS sucks. I've never had to bring any of my infants to a hospital for a damn cold (but hell I've never had a winter baby either). My other kids didn't get weekly therapy (a pain in the ass because I have to like you know clean). But when I think about it, all the things that I worry about with her? I worry about with the other kids too because life can be shitty and unpredictable. But you know it's the love that carries me through. The incredible bright beautiful love I feel for them all. Jude is really just another damn awesome beastie. What that boils down to for me is that while this life is sometimes tough, gross, and anxiety inducing, it's also the best life I never imagined. I don't want typical. I never have. I want extraordinary, and even on days like this, it's pretty clear, I got it.