Tuesday, June 12, 2012

Days of Summer

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Noah Wearing Daddy's Hat

Noah enjoying the swimming pool chair

Happy Taking a Walk

Noah's grandma got him a bigger baby swimming pool and spiderman floating chair to help him enjoy more outdoor activities. He really likes being outside, but really prefers water temperatures like his warm water therapy which is usually between 92-94 degrees, I will however find a way to hook up the hose to the sink I am sure and string it outside to fill up his pool... I will just have to get a little creative. He had a great time and was all smiles. He also loves to be toted around by his daddy, and wear his daddy's sun hat. Noah can be quite the little character with his infectious giggle that has the ability to melt anyone's heart.

I of course spent much of the weekend filling out waiver request forms for SSI. I had mixed feelings about filing that paperwork out opposed to a reconsideration form. When you fill out the waiver request you are essentially admitting that SSI calculated correctly and are basically begging for your overpayment debt to be forgiven. I however still take great issue with the fact that SSI calculates their figures on estimates and are always 2 months behind with their calculations. To me there simply should be a better way, a smarter way - and easier way. But I'm not the government and I didn't develop the system - I am simply one mom at its mercy. I am very much worried as June is another month with 5 Fridays which means 5 paychecks, which means no SSI or Medicaid two months from now. I have grown to hate months with 5 Fridays.

I continue to have these magnificent dreams about Noah being able-bodied - I say magnificent because to me they are just that. They don't make me grieve, they don't make me long for what Noah isn't doing, but rather it almost feels like God is sending me messages in my sleep of things I get to look forward to. Last night I dreamt that Noah said Dada for the first time. He was a bit older in my dream, and would repeat it when asked. Of course his first words would be that -- after all the bond he has with his dad is the most special relationship I have ever witnessed between a parent and child. Chris loves his little buddy with his entire heart and soul. The two of them are so alike, I can even look at Noah and it's like looking at a mini version of his daddy.

Noah also is rolling faster than ever which I think is largely driven by the need to keep up with Luke's mobility. Nothing like a little sibling to get your goat and get you moving. Of course with the added speed of Noah's rolling comes with extra chapped arms, elbows and face. I am constantly putting lotions on it with little success - darn carpet just wants to keep him in constant rug burn mode. But Noah is very proud of his accomplishments - you can see him beam and glow with achievement when he manages to do something he is trying to do.

Noah also had his first session of hippotherapy. It went really well, he even worked on his walking a bit after riding. His therapist is really positive about Noah which I love. It's great to have people really in Noah's corner cheering him on and believing in him. Noah I think especially enjoys the constant movement and his therapist singing to him. She even brought out bubbles for him so he had something to look at while he was riding. I think this therapy will be a tremendous help for Noah, he really is working very hard when he's on that horse. Harder than I ever imagined he could. He's giving it all he has, so we'll continue to help him and give him all we've got too. Even if that means I guess I have to sell the shirts off our backs... that's just what you do is make the necessary sacrifices, he is worth it. He is worth all of it.

“Prayer is not a substitute for work, thinking, watching, suffering, or giving; prayer is a support for all other efforts.”George Buttrick


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