Tuesday, January 4, 2011

Sensory Days

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Noah started his new year off a little rough. There are just so many overwhelming sensory issues for him. Can't turn on the electric knife without him screaming... the blender often sends him to the moon... his Tickle Me Elmo that I thought he'd love freaks him out. We've been without internet service for several days. And Qwest come at all time unannounced to make more repairs that still have yet to fix it. We only have access for minutes at a time and then are without it for hours and days at a time after that. A service man rang the doorbell yesterday during Noah's nap, I of course still have to snuggle with Noah in our bed for naps, he has not learned to soothe himself enough to take an independent nap. Once the doorbell rang, our loud mouth barking dog, Hollie wouldn't give up, causing Noah to immediately cry. I attempted to tell her to be quiet which made Noah even more upset, because in Noah's world you can't get mad or upset, he's too sensitive for it, and that makes his hysterics worse. So Hollie runs outside and barks, which still is upsetting to Noah while the Qwest service man is yelling at her through the fence to shut up. I put Noah down because I have to do something. I attempt to call my mother because she happened to be off of work, only to find Qwest had disconnected my phone line. I'm scrambling for my phone as I charge out the door to tell Qwest exactly how they've tortured my kid and ruined my day, with their unannounced visit and ask him to reconnect my phones.

Noah of course was still crying and hysterical by the time grandma arrived. We took turns trying to soothe Noah and calm him. He gets so worked up and often time just lacks the ability to self-calm. It's not his fault. This is all part of his neurological damage. His triggers are so sensitive, he just can't help it. You can't offer him a bottle until he calms because he tries to inhale and gasp which is risky for aspiration, you just have to walk with him and hold him and tell him how much you love him until it's over and it could last a long while. I was thankful for the extra set of hands to help Noah through it. I know it was a combination of a very short nap with terrifying noises that set him off. I'm sure it's really hard for Noah to be Noah. He lacks the ability to tell us what is bothering him, he can't run from anything, he's completely dependent.

Well intentioned people tell me that the only way to get Noah past these things if force the exposure of them on him. But that's not the key. A mommy's intuition tells me the opposite. That would be torturing Noah. He will either find a way around them, but I'm not going to purposefully expose him to things that I know will cause him hysterical hour long meltdowns. I'm doing the best I can to fix them, buying anti-barking devices for my big mouth, contemplating disabling the doorbell so that the dogs don't freak... packing Tickle Me Elmo away in a box...

I've always had this tendency to gravitate towards movies that aren't all happy endings and roses. Movies that whether they be fictional or not, have such heart and character you believe that someone could have really lived it. Like Terms of Endearment, Steel Magnolias, Thorn Birds, or the one I re-watched last night Fried Green Tomatoes. People that have such heart still while possessing typical flaws that we all have. In the movie there is a section that always made me cry, even years prior to Noah's birth. Where the character Mrs. Threadgoode, or as I believe is really turns out to be the character Idgie, describes having a special needs child, Albert. The book rather offers a way more detailed description of Albert, and Mrs. Threadgoode's reaction regarding his circumstances. They suggested to her that the child would be a burden. And she replied:
"How could that precious, sweet baby ever be a burden? How could anybody think such a thing? Why from the minute he was born, Albert was the joy of my life. There wasn't a purer soul that ever lived on this earth. And years later when I was feeling a little down, I would just look at Albert. I had to work everyday of my life to be good, and it was just a natural thing for him. He never had an unkind thought. Didn't even know the meaning of the word evil. A lot of people may have been sad to have birth-injured child, but I think the Lord made him like that so he wouldn't suffer. He never knew there were mean people on the earth. He just loved everybody and everybody loved him. I truly believe in my heart he was an angel that God sent down to me, and sometimes I can't wait to get to heaven to see him again."

If only years ago I would know in hindsight that my own birth injured son was in my future. Maybe there was a reason I always connected to that passage and never understood why. I too do not see my child as a burden. As challenging as some of our days may be. He is and always will be my gift. I will remain always humble and thankful to God for sparing him and allowing me to parent him the very best way I know how. I pray everyday that therapy continues to help Noah, that with this unconditional incredible love that I have bursting from my heart for him that it will be enough to carry him his entire life. That he too will not ever see the world in it's most wicked ways. That he will only understand pure love.