Wednesday, September 23, 2009

Noah in his Belly Band

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Noah did beautifully in therapy today. Everyday I think Noah makes improvements. He played on the swing and tried on his belly band for the first time today. He was all smiles and was so happy the entire time. His therapist and I discussed today just having Noah with one physical therapist rather than the two he sees now. For whatever reason Noah has been particularly fussy on Fridays with his therapist Nikki. And she is truly wonderful. She sings him gentle songs, lets him even grab her long hair without ever complaining, and she offers Noah a million toys and things to make him happy, but he has none of it. At first we were thinking maybe Noah just had a problem with visually seeing me, but he doesn't do this for the other two therapists he has. So we've collectively decided that Noah will just see Beth for both of his weekly physical therapy sessions. Hopefully we'll still get to say hello to Nikki here and there, she's such a sweet person who genuinely cares about Noah and has become like extended family.

I feel so comfortable with Noah's therapists. They are an incredible team, I love how they all come together for him. They pool their ideas and thoughts, to find the very best treatment options for Noah. They really care about him, and not just as a patient, these people really love their jobs, and love these children. Noah's therapist also gave me information on an organization that might be able to help us get the platform swing that we so very much want to install in the basement for Noah's therapy. It was so nice to be pointed in a direction.

We also got information on a equipment clinic that Children's Hospital is doing in November. It's on a Saturday and it's in Glendale, so I'm not sure if we'll be able to make it, but I'm so glad that his therapists offer me every piece of information that they can. I'm trying to be one big sponge and soak up every single ounce of information and advice they offer. Noah also sat by himself for a bit on the swing unassisted, every week he does something just amazing. I'd love just to cry tears of joy sometimes and if I didn't have an audience at therapy I'd probably do just that. Noah brings me to my knees with his smallest of achievements. This sweet little baby has no idea how much he touches my heart. Noah is the most special person I've ever met in my life. I don't know that he recognizes his small successes, but I try to make sure he knows that he's doing a beautiful job at everything he does.

As odd as it sounds it is often very comforting to go to therapy, to see other parents with kids with special needs, often times we don't speak but our expressions are the same, our eyes meet and we connect without a spoken word. I remember once our therapist Beth telling me once when I was apologizing I think for Noah and I having a bad day and she said I didn't have to apologize because I was amongst those that understood. It was so very comforting of her to say.

I remember so vividly someone telling us that we'd be better off if Noah had not survived. I think about that often how someone could be so bold to say such a thing. Yet I shouldn't be shocked these days at what some say. Chris and I have gotten a variety of statements since Noah has been born, sometimes I think people mean well they just don't think about what they're saying before the words spew out of their mouths and the damage has been done.

I keep thinking about those mothers that I see and know that have children that face harder challenges than Noah. The children that cannot track, that have seizures, GI tubes, that are completely paralyzed. I think it's important to remember for everyone that there is always someone that has it worse than you do. We often complain about things we shouldn't. In the big scheme of things there are a lot of things that simply do not matter. The mother that has to get up at two in the morning because her child is running at 105 temperature, is having seizures and she's trying desperately to suck the secretions from her child's lungs with a machine that is no longer working, the young man that is burned beyond recognition and has no use of his crumbled hands, or the woman dying of heart failure and will not live to see another Christmas. They all have the right to complain yet they rarely do.

I want to teach Noah not to sweat the small stuff. You can never change the way someone thinks, only the way you think. I will have to teach Noah to have thicker skin, not to fall prey to someone's wicked words or unkind glances. I have to teach him to be strong, to find purpose in each day without using his disadvantages as an excuse not to be all that he can be, and to share his inspiring message with the world.

I've attached some pictures of Noah in his belly band on the swing at therapy. He was being such a little show off today.

Stacy, Chris & Noah