Right on schedule we have received our two weekly SSI notices. One indicating an estimated re-instatement amount for July and another large overpayment demand of $1,358.90 and $52.00 (for April and May 2012). Chris and I are really becoming emotionally and physically exhausted from all that is happening. We're doing all that is asked of us, we sent in pay stubs for April and May timely and yet they still think they have paid us too much. How can this continually be? I feel like all I do is fill out waiver and appeals forms every other day, and that's not an exaggeration, I have certified mail receipts to prove just how much paperwork I am constantly filling out. Does it do any good? No. They'll hold all the power and can determine whatever they feel like against you. No one is hearing me, no one is helping us. SSI isn't even acknowledging any of my requests for informal conferences. I just need someone to rescue us from all this.
There are days when I ask God literally why he's giving me so much because I can't keep up, as strong as I am I am cracking. Bit by bit, piece by piece. How can you not? The unbelievable amounts of stress this is causing in our lives. Always the threat of losing Noah's Medicaid. I have searched out every program Colorado has to offer, the buy-in Waiver, the Hospice Waiver, the CES Waiver, The Long-Term Waiver, there is nothing out there that can help. Noah is on the Long-term wait list (non-income parent based Medicaid) but the wait list is nearly 4 years long and if you are eligible for SSI at the time his number comes up they kick you off the list, the buy-in Medicaid counts Noah's nursing pay against us as well as Chris' paychecks and eliminates him from all Waiver lists if you even have to depend on it for one month due to getting kicked off SSI. The CES Waiver has a 7 year wait list, and Noah was denied twice for the Hopeful/Hospice Waiver. And CHP+ doesn't have the same benefits as Medicaid along with co-pays and lesser coverage and it would kick Noah off his nursing program. I just can't believe that the system has found a way to essentially screw parents like us. There is already so much we face on a daily basis that you'd think we'd at least be able to find piece of mind with Noah's care.
There are opinions out there that Noah will "never" recover or get any better than he is so why are we bothering breaking our backs trying to pay for his therapies and find him help, raise money for a service dog, beg foundations to help us. First I'd like to point out unless you're God you don't get to have an opinion on how far Noah will go. He's already made tremendous progress. This child couldn't even grasp and object and now he can grab and release pegs at warm water therapy upon request. I refuse to roll over and play dead and say this is as good as it gets. I would be failing my duties as his mother. I will search the ends of the earth to find him things that will help him. Neuroplasticity is an amazing thing and the brain has the ability to change itself, with children like Noah it just takes more work and guidance to help build the bridges that were broken. It's not about accepting Noah "as is." It's not about loving him the "way he is." While I always appreciate words of encouragement and comfort, some unsolicited advice often is abuse and crosses the line. For instance being in a Babies R Us store and having a cashier tell me that someone should have just put a thumb down Noah's throat and ended him, or that I must be a martyr because I decided not to institutionalize him or shopping at American Furniture Warehouse and have the sales representative accuse Noah of having the physical capabilities to change a tag on a chair to attempt save his parents a mere $6. And of course you always have those Nosey Nellies who somehow think they could do a better job than you are doing with both hands tied behind their backs. Chris and I have so much on our plates that we simply can't take it all to heart or we'd literally blow up from excessive pain. We are obstacle survivors.
Please continue to hold Noah in your positive thoughts and prayers; that we can once again find a way to maintain his benefits and battle SSI and to work hard to provide him the therapy and equipment he needs for continued recovery.
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.