Sunday, February 13, 2011

Wonder what Molly is doing... (hopefully sleeping, like I should be)

so before you click here get some tissues. I was fully warned before watching this even shorter version of "where's Molly" in my EI Partners class today, and I thought.. I can tough it out. I won't cry, not in front of a room full of strangers. I'm good. Not so much. This short, very briefly worded clip with haunting music and even more hauntingly somber music, is a tear jerker no matter what. It made me want to walk out of the building and drive to Larry's and hug Cheese. I can't imagine what life must have been like for those who were dealing with or had a disability before modern times.

Institution. Think about what pops in to your head when you hear the word. The associations you have with it from movies, TV. Big sterile buildings, full rooms of people wearing white, drooling, rocking, yelling. Or worse yet, just sitting. Relegated to what is the space of their own body and that is it. Left there. To just be. Not to be the best, or be everything they can be.. but to just be. Because that is how they handled disability back in the day. Or mishandled. And maybe I'm shaking my mommy finger and saying shame on you out of line, but as a mommy of a special needs, highly medically complex child...I don't think it's wrong for me to pass some judgment.

Part of this is why I try so hard to make sure Charli has every available opportunity we can get right now. Because I know she is more than just being. SO much more. So much life and progress and opportunity. And I also know that isn't the case for everyone, and not everyone has the ability to be home all the time. But something about the way it was handled before is just so heartbreaking. Not something, everything. They didn't HAVE what we do. The tests, the multiple diagnoses. The ability to participate in a society that once said you have to go be in a home with other people who are just like you. Just that alone is reason enough why we should proud. WE DON'T tell people you have a disability, go hide. Or hide it. We stand on corners, or shout on rooftops, or facebook and tweet our causes. We don't put it in a room and pretend it doesn't exist. We join panels and support groups and meet other people because we WANT to know MORE. We want to know that there are OTHERS out there. In essence, what we have now may be almost harder (i know, not really) but it's hard to find others that understand the situation you are in sometimes. Sure everyone wants to get it, or tries, but they don't. Unless they are in it. And unless you find people who are dealing with it too... you are on an island. It may be an island you choose to put yourself on, but it's an island none the less. Alone. I'm not ashamed of all we've been thru. I know that what we have been thru has been hell, and we have all come out on the other end. I don't want to stick my head in the sand and pretend it didn't happen. I did that in the beginning actually, which is why the small part in the back of my head understands some degree of "Where's Molly". Because I wouldn't even acknowledge that Charli had a stroke for the first five months of her life. If I didn't say it, it didn't happen. At the time it seemed like I could get away with it. She was seemingly unaffected by the stroke. Everything could be fine. I could just pretend like it was a glitch in the mainframe and none of it happened. But reality was December 26 2008, when she had her first seizure. Her first of what would be (one could only speculate) hundreds of thousands..maybe million or so seizures. When she started to grow larger and show that left sided preference (that doesn't typically emerge certainly before a year) It was then that I had the fight or flight response. And that time I choose to fight. And fight like hell. And not ever turn my back on it again, because if I do, it could sneak up and knock me right on my ass. Well, it has anyway at times, but this time it wouldn't be because I was sleeping on the job. I threw myself into research, groups, learning as much as I could. I tried to get as many therapies for her as possible with the possibility of severe damage lurking daily from her seizure activity. New catastrophic diagnosis brought about the ability to have more services, and I gladly ate up all time slots I the point where it was, and probably is too much. But we need it. I need to know what to do with her, and we need to push her. Look at where it has gotten us! Since May, my girl who didn't talk babbles and jargons constantly, rolls ALL over the place (she hadn't rolled since she was four months old) has at least 20-25 words, 5 of which are functional. She is holding her own bottle, She is sitting up unassisted (wish a spotter.. but still...she sat up in the IFSP the other day for TWO hours playing with her IPAD) It's because I researched my ass off, and talked with other parents that I found Dr. Chugani to begin with. And that brought us to Detroit, which brought us our miracle. It will be bringing us to Maryland soon for a feeding evaluation so hopefully we can get some good insight on how to properly go about feeding Charli, and what her possible areas are that need work. And what is causing her stomach issues would be nice to know too (which I guess I's more of what can we do that we aren't already doing)

I guess the really messed up point to my rambling is that she is my life, this is her life, and I am going to make it the best life possible. We all are. Here family, therapists, doctors. Charli inspires me to greatness. I want to do everything I can to advocate and educate people for her. I want people to know there are options, you dont have to like your dr, or listen to what he says. That there are surgical options, that there are new drugs coming down the pike all the time. I want to do as much as I can parent to parent. It's a hard road to start on , but as you travel down it eventually you realize it's not all that bad. You meet people that get it. That understand You. And then maybe you decide someday you want to do something... like me. I try to be as active with the groups and push my causes when I can. Everything I do I do for Charli, and I just want her to be a happy, smiley little girl like she already is.

I kind of just lost my ooomph for blogging, getting really sleepy again.

I think, if you have a child with a disability, you should watch the movie. It's heart wrenching. But it's worth the time to stop and appreciate the world we live in now, and how lucky we are and how lucky our children are.

I think it's time for bed again...

Not solely what I wanted to blog about, but there is always another day. Makes sure you go see Molly

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