We finally got back into therapy after a mini break for Noah to recover from his cold. He is feeling much better which is a relief. He still sounds weird at times, but that is pretty normal for Noah. I think by the nature of just who he is, he often swallows differently and sounds a little cloggy sometimes - even when he isn't sick.
I had another "mini moment" as I refer to them as today. Those moments when I just can't help but be overcome with a moment of sadness. I think today it stemmed out of frustration that I don't have the means, the money, the ability to get things that may make a difference in Noah's recovery. I know there is absolutely no guarantee that any object on this earth would make a difference in helping him, my mind tells me that, but my heart - my heart well, it tells me try everything... I worry so much about the fact that Noah will be a year old in about two weeks, and still isn't sitting, not even close to being able to sit, cannot roll, cannot crawl, cannot walk, and talks and communicates in his own language, but not as other babies babble. I try to fill my days with inspirational stories, latest technology articles, and researching therapy equipment and gadgets, all the while balancing caring for Noah and working with him each day. I eat, breathe, and sleep nothing but Noah.
I found yet another neat thing today to add to my collection of therapy things I'd love to get for him, a home therapy infant swing at south paw enterprises to companion the platform swing for vestibular stimulation. Nothing is under a hundred and fifty dollars, I tally it in my head like a broken calculator that doesn't have a shut off button. I wish more than anything these items were like going to Babies R Us or Target and paying $30 or so for the item. Then I feel guilty about trying to buy a birthday cake and hat and putting off buying him a new belly band. But I want so badly to make this birthday and this Christmas the ultimate event for him, to make up for our crummy beginning and our holidays last year. But more than anything the one thing I want for him, I cannot buy, and that is just to have him be a regular baby. And it's not a want that I want for me, I love Noah no matter what, no matter if he can or cannot do these things, my heart breaks for him, because he is so very important that I want to make it all right for him. It is often a very powerless feeling as a mother to know you cannot fix something for your child. That's what mothers are supposed to do, put band-aids and kiss all the boo-boos, fix all that is wrong throughout your entire life.
I know Noah knows nothing else, he doesn't know he should be sitting, and I find comfort in that. He doesn't know what he's missing, doesn't know that he's different. I know he is frustrated that he isn't mobile, he squeals when he wants to go somewhere and begs for me to tote him around room to room. Chris and I are his only form of transportation and he knows it.
Noah has taken to talking to the big angel on his train tree. I think he thinks she is a mini version of the real deal. He would know best. I enjoy listening to him talk to her. I have moments where I fanaticize about her flying down off the tree, wrapping both of us up in her ivory little wings and fixing everything. We're hoping that Noah gets more cards for his stocking so far he has only gotten two. I tell him that we're going to stuff his little Elmo stocking full of great things.
Love,
Stacy, Chris & Noah