Saturday, February 4, 2012

Waiting for Miracles to Blossom

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Noah & Daddy out in the Snow

We received notification that Noah's request for a toilet chair has been denied by Medicaid:

"f/u 2/7 e-mailed, D339497 denied flamingo, per Melissa, ref #2360219, client is not toilet trained at this time so equipment is not a benefit. She said he needs to be toilet trained to request equip. LMN from Kerry states he is beginning to use body language and sounds to tell parents when he needs to use the bathroom and is responding to verbal cues when asked if he needs to use the bathroom."

It's not like I can dangle him over the toilet while his floppy body goes side to side to potty train him. Regular children get training potties... yet it's a BIG deal if you want one for a special needs child - they aren't quite "entitled" to the same commodities or luxuries the rest of us are. So no toilet, and no chair. It is such a big misconception that insurance helps. Really it's quite a joke if you're on this side of the fence. It truly is terrible to need something for your child's daily living that you can't get your hands on. These items are literally thousands of dollars. There isn't a chance of paying for them out of pocket. Combine that with Noah's out of this world therapy costs and it's enough to make you want to throw a tantrum bigger than Rumpelstiltskin. One not so friendly SSI representative told me a few weeks ago that if I didn't "like" the system and how it benefited my son that I should go sit on my state representative's door step... oh yes isn't that the answer to everything.... it all falls upon deaf ears. Not to mention what time do I have to try to negotiate unfair terms with the government?

Noah has been in great spirits for the last few weeks. Lots of smiles and giggles - especially for his daddy. Although Noah still seems to be struggling with eating soft solids like spaghetti still, he has taken renewed interest in eating his little brother's yogurt bites, and Quadratini chocolate wafer cookies. He finds the crunch it makes funny, and I'm thrilled he will at least bite down on something, other than my finger and his toothbrush. I still continue to pray that with a lot of time, patience and love, that Noah will one day eat solid foods.

Our big snow storm brought us 19 inches yesterday, I watch the neighbor kids play, sled and build snowmans. I try to pretend it doesn't pinch my heart but it does - some part of me I suppose will always ache for Noah to participate in age appropriate activities. His daddy did take him outside briefly to see the snow, but the snow is simply too bright and he just squinted and was the best sport he could be for 5 minutes while his younger brother touched the snow for the very first time. It's like night a day sometimes, having two children that experience the world in very different ways. Noah missed out on so many activities from sucking on his thumb to putting odd objects in his mouth, to even grabbing a handful of snow and finding awe as it melted and disappeared. And I genuinely think that Noah understands his surroundings and recognizes his little brother who is not even half his age can do things he only dreams of. As a mother I can only hope that it will fuel his drive to work hard to gain back the physical abilities that he lost at birth. So for now we continue to wait on miracles to blossom, just like we await springtime.

"Where hope grows, miracles blossom." ~ Elna Rae


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.