Today was Noah's baby check-up appointment. There are days when I feel like I simply cannot win. I'm boldly reminded around every corner that Noah doesn't fit any typical baby mold. I'm so tired of filling out these stupid questionnaires, about what your baby can do. Today's questionnaire had no's checked on all 5 pages. He's doing nothing babies his age can do, not one single thing. Why make me fill it out? It's pointless. We all know he's tremendously behind. There is something in every part of my day that is a constant reminder that Noah is so far away from being like everyone else. I'm not allowed to have a normal day. My days are not like everyone else's. It's far from easy, it literally makes you feel like you have this overweight monkey sitting on your chest that refuses to get off and keeps jumping up and down on you for kicks and giggles while you lay there struggling to breathe. And no one ever comes to tranquilize it.
Noah's hemoglobin tests were fine, he didn't even cry when his finger was pricked and he got his very first band-aid which is bugs bunny. As the nurse put the band-aid on his finger she said now don't you eat it, and I had to remind her, don't you worry he can't get his hands to his mouth. The doctor still thinks that Noah is underweight. He is gaining but not fast enough for their liking. He weighed in at 16lbs 13 ounces and has gained a 1/2 inch since his last visit. Now they want me to do blood work to see if Noah has a deficiency in another area that is causing him not to gain weight faster. They also have put in a referral to a nutritionist and GI specialist for weight gain and occasional constipation. My gut instinct as Noah's mother is that there isn't a problem of any kind. There are healthy normal children that fall into this weight category. And it's not like Noah is going backwards, he's not losing weight, and he hasn't stopped growing.
I have days where I try to figure out exactly when was it that God decided that he'd give this life to me. Was it when Chris and I were sitting in the lobby of the doctor's office and I seen a severely handicap child and it's mother and turned to Chris and said I'm so glad that will never be us the day before Noah was born, was it the day I held a down syndrome's friend at a high school dance and said you look so very pretty, was it because I followed all the rules and never colored outside of the lines with my life and God thought I had it too easy? What was it? Could I have changed it? Could I have done anything differently so that God would have made Noah not have special needs? I still have this beautiful fantasy that I'll be able to get Noah to recover almost fully if I keep diligently trying all this therapy, that there is light at the end of this dark tunnel with lights that flash dim and bright. I try so hard not to succumb to the the thoughts of acceptance that Noah will never walk and talk, even though most people take every opportunity to remind me that is most likely true.
I've posted Noah's song that was made especially for him on his website, it is in the upper right hand corner of his site.
Back of every creation, supporting it like an arch, is faith. Enthusiasm is nothing: it comes and goes. But if one believes, then miracles occur. - Henry Miller
Stacy, Chris & Noah