Just as I think things have been resolved and sorted out receive a call today from one of Noah's therapy centers informing me Noah has made the list for children that are no longer eligible for Medicaid and therefore he can't attend therapy. I keep thinking surely it's an oversight, but sure enough after I make numerous calls to SSI, Medicaid, the Jefferson County Department of Human Services they all confirm that Noah's benefits have been withdrawn without "further information." Noah has been without insurance since March 1st. That means no therapy and the most frightening part, no help with medical costs should he need to see a doctor. I keep wanting someone to pinch me so I can just wake up from this bad dream. All of it - from the very beginning when a doctor uttered the words "severe global brain damage." How has this become our lives? I really am not sure how to sort it out this time, SSI says I have to deal with Medicaid, Medicaid tells me I have to deal with the Department of Human Services... and I continue to be bounced around. We seem to be stuck in some serious muddy waters.
I walked by a picture of Noah taken when we took him off life support with the Lay Me Down to Sleep Foundation that hangs on our bedroom wall, usually the picture brings me such comfort - my miracle picture. Yet today, it brought pain, not for me but sadness for my Noah. I just wish I could do so much more for him. Get him therapy he needs and deserves for a chance to get better, equipment so that he can sit upright and not have straps digging and cutting into his shoulders because he is too big, stable positioning so he has a chance to learn to eat better, a bed that offers him safety and elevation so he can breathe and sleep better. A chill-out-chair to sit with the rest of the family on the couch to feel apart of the family, a toilet so he can go potty like any other toddler. There is no worse feeling in the world than feeling like you are falling short when it comes to providing for your children. Noah deserves so much more, and the system is failing him - it's failing us.
I am so frustrated that I can't seem to fix Noah's SSI and Medicaid problems, that I don't have the funding I need to get him all necessary therapies that Medicaid won't fund, all the equipment he needs that is denied. It is such an uphill battle each and everyday, and it does wear on me, I think I've aged years, cried a thousand tears, and fought many wars and I still feel like we're not much further ahead than where we started.
New news articles are being passed around the special needs community of doctors who feel that euthanasia or "after birth abortions" should happen for children like Noah so they don't cost the community money, time and efforts. People discussing how they just used to put thumbs down children's throats to suffocate them in the old days to prevent children like Noah from existing. And really it does feel like most times that many view Noah as a burden on society. We haven't come as far as people might think. Even an article with a mother stating: "If I were the mother of a suffering child - I mean a deeply suffering child - I would be the first to want to put a pillow over its face... If it was a child I really loved, who was in agony, I think any good mother would." Well then put me in the group of bad moms because I love Noah so much that I would die for him before letting another human being harm him, I would cut off my right arm if I could find him all the therapy in the world, I would give away my all my earthly possessions and live in a box if he was given every opportunity he deserves in this world. Once you become a mother you fight for that precious life that God blessed you with at all costs. I only wish that these evil thoughts about children like Noah didn't exist. I fear greatly that there seems to be so many that casually think you should erase a disabled child's life and just "end them" like they never happened. that they are this financial burden sucking society and taxes dry. I know I could sit her on my soapbox all day long and my small voice can't change a thing, but until my dying breath I will be here for Noah giving him everything I've got, even if that means continually hitting my head against brick walls when it comes to getting him the help he is entitled to.
For those interested in reading about these horrific thoughts about terminating precious lives like Noah these are some articles: We all should be very afraid of the direction this world is headed. We welcome all the prayers we can get as we continue to fight on to help Noah.
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.