Just One Of Those Days

Yesterday was one of those days. An ugly cry day. I don't get them as often anymore but every so often they sneak up on me. They're the days where I wonder how in the world did I get here?? Teaching a 21 month old how to make consonants. Feeding her formula in bottles still. Watching intently for where her eyes are moving so I can report to her ophthalmologist which eye is wandering more than the other. Questioning whether she'll ever be potty trained, walk, talk, move to a big girl bed. What will her IQ be? Will she ever be able to play with her sister? Will she ever say "mama" or "I love you"? The intellectual side of my brain tells me, "life will be different, yes, but oh so beautiful". The emotional side of my brain starts screaming.

This was all sparked by a much awaited visit with someone from a Medicaid waiver office. We have been paying quite a bit in Amelia's medical bills ever since she was born and, until now because of her having no clear diagnosis, we have not gotten her Medicaid. Being someone who is globally developmentally delayed, has many specialists following her, and receives services in all areas she is actually a good candidate for Medicaid. I've been banging my head against a wall trying to navigate the system, figure out which waivers she qualifies for and the right people to talk to. FINALLY, I got in touch with someone helpful! She told me that Amelia MIGHT qualify for one waiver but if not, she will probably qualify for another. Both will significantly help with her medical bills, travel expenses to Rochester where most of her appts are, maybe help with adaptive equipment (special needs stroller), etc. But the process of filling out her application, being asked these questions about Amelia's abilities, it was emotionally taxing. And when trying to get services for anybody the focus is on what they CAN'T do instead of what they CAN. So it was 2 hours focusing on all the ways Amelia's disability makes it difficult for us to manage her care. The care manager was so sweet and she would say things like, "great! So glad!" when we told her "no" to questions like, "Is she on multiple medications?" or "Has she been hospitalized in the last 12 months?" but one thing she said will not leave my brain. She told us she was surprised Amelia already qualified for eligibility through the Office of People With Developmental Disabilities (OPWDD) and then she said, "provisional eligibility means she'll need to be re-evaluated at age 7, but if she qualified this early I don't see it being any trouble getting her re-qualified then."  She meant it to be encouraging. Eligibility for OPWDD is necessary for coverage for all the things needed to raise a child with special needs. If you lose OPWDD eligibility, you're kind of up the river without a paddle. I was told recently by someone that Amelia's eligibility letter is GOLD, it will get us far. I was encouraged by this and then I thought, "oh wait, to be qualified at age 7 you have to have an IQ lower than 70...." A whole other wave of grief crashed over me. "So if she'll probably have no trouble getting qualified at age 7 because she was granted eligibility this early, does that mean her state right now indicates she'll probably have a significant intellectual disability????" It's been going through my head unceasingly ever since. Matt assured me that we don't know what Amelia is going to do. We don't know what God has planned for her and us. He also said, "Did you miss her say the good thing about these waivers is we can change which one she's on at any time because kids always change? She said that people are always changing. They're eligible for some things at one time and suddenly not eligible a year later. There is no way we can take one thing she said and assume Amelia will have an intellectual disability." I keep trying to remember his words. And remember the promise that God will take care of us and lead us through all of this no matter how far Amelia progresses, I take comfort in that more than in anything else.

So right now, I will let myself grieve. It's healthy to grieve. There's a quote by John Piper that says, "Occasionally, weep deeply over the life that you hoped would be. Grieve the losses. Feel the pain. Then wash your face, trust God, and embrace the life that he’s given you." And then I will look at the face of this sweet sweet little girl who I get to snuggle and rejoice over the smallest milestones with. I mean look at this:

How can I grieve when I am holding that face?? She's a precious gift. And I am so so thankful.