Troy has been very busy coordinating the massive paperwork and extra appointments that must take place in order to 1) get Brady's fall pre-school situation set up and 2) get us qualified for long term care. We received our long term care approval two days ago and feel EXTREMELY blessed right now. This means that Brady will be able to continue all of his therapies in addition to pre-school. We won't have to say goodbye to our wonderful therapists and bear the responsibility of habilitating him on our own. Long term care will also cover the medical expenses that our insurance company doesn't cover. We received a secondary insurance card with zeros next to "Office Co-pay", "ER Co-pay", "Prescription Co-pay", etc. It's difficult to get approved for this program, therefore we're still in a bit of shock over the whole thing. Ironically, we learned it was Brady's recent Epilepsy diagnosis that likely solidified our acceptance.
This is a program specific to the state of Arizona. Most states have similar programs, but they vary widely in funding. We have been told if we lived in New York or California we would get so much more. Unfortunately, in other states, the programs are vastly under-funded and countless deserving families receive no assistance whatsoever in raising their children with extraordinary needs. I hesitate to give the details because I just find this whole funding situation so unfair. But I truly believe that knowledge is power and I want other parents to know what is available out there. On top of the medical cost sharing, we are qualified for a certain number of hours of respite care in our home each month. Assuming we can find a respite provider we are comfortable with, the state will pick up these costs as well. Respite care is meant to allow parents time to run necessary errands, spend quality time together, or simply do household chores that so often go undone when you can't take your eyes off a high needs child. Troy and I learned the hard way how exhausted and depleted we were capable of becoming when we dealt with the escalation of Brady's Epilepsy a few months back. This program will provide us a safety net, both functionally and financially.
It feels strange, and a little humbling, to receive all of this help. Brady is doing so well right now that some days I almost feel guilty about all of this help. Yet other days I see typical three year olds and realize that the gap between Brady's development and theirs is starting to widen. I constantly hear of this window of time in which kids' minds are so capable of learning and I am so grateful we have some serious assistance in maximizing what is left of this window. The bottom line is we are lucky... in so many, many ways. I said this to an ER doctor once and he laughed at me and muttered under his breath, "yeah, reeeally lucky" as he looked down at Brady. What an A-hole. We are lucky I didn't lose Brady at 25 weeks when I started to dilate. We are lucky that our geneticist's initial hunch that the Bubs had a life-limiting metabolic disorder was wrong. We are lucky that Brady is silly and loving and stubborn. We are lucky to have supportive friends, family and countless professionals willing to help. Just plain lucky.
We are also lucky that Brady met a new friend. We affectionately refer to J. as "hair twin."