I hadn’t slept, wasn’t eating well, and quickly I had found myself spiraling out of control, all stemming from a small mistake the county made almost 2 years ago.
In short, Lucy should have been able to receive Medical Assistance through TEFRA (state funded medical assistance for children with disabilities) the moment that the county deemed her “disabled.” But instead of leading us in that direction and completing the paperwork necessary for TEFRA, Lucy qualified for MA based on our income. And now, two years later, since our income no longer qualifies under those guidelines, she will have- quite a lengthy- lapse in coverage until the paperwork can be completed and reviewed by SMRT (state medical review team).
Unfortunately for us, this goes so much more beyond basic medical insurance. Lucy’s MA covers her twice-weekly visits with her PCA (an out-of-pocket expense of $30+/hour) and her upcoming visits to the Child and Family Psychology Center.
The moment I received that letter in the mail is when the world began crashing down, a whirl-wind of circumstances beyond my control that feels like elephants standing on my chest. And of course, when it rains IT POURS. The constant worry of “how am I going to pay for this?” among many other woes, I was completely ignored and hurt by someone who I held in such a high regard- a constant reminder of how inadequate and unworthy I am. And the downward spiral of life continued.
Soon I found myself truly wallowing each day, wearing my uncertainty, hurt, and sadness on my sleeve. I was embarrassed by my sludgy attitude, but nothing seemed to help pull me out of the pit. You see, that pit of anxiousness is where I fall, and instead of pulling myself out and breathing for air, I become totally encapsulated and I let darkness seep in.
One day I received a call from Lucy’s primary doctor. An angel in disguise, who I’m convinced heard my hopelessness through the phone, asked how Lucy was doing in Kindergarten.
“Oh my gosh! She’s doing amaaazing!!!! She’s surpassing every expectation we’ve ever had. I… well, her whole team, is constantly amazed at her growth this past year. Her teacher said she’s running out of things for her to read, she’s getting little to no para support in her classroom. She’s just… she’s just so unbelievable. She’s the poster-child for early-intervention. I think of where she would be without all the help along the way and…”
She was quick to cut me off.
“You know, we’ve talked about this before. While that may be true, I urge you to give yourself some credit. She wouldn’t be doing so well without you, without your husband. Believe me when I tell you that this is not always the case. You’ve worked really hard to get Lucy the things she needs and it’s always worked out. That wouldn’t happen if you weren’t an exceptional mom.”
You’ve worked really hard to get Lucy the things she needs and it’s always worked out.
My Type-A Personality often shines in the ugliest ways, while others have to endure my wrath when I am (or feeling like I am) not in control. But it wasn’t until that phone call that I realized that’s the nature of the beast.
Paperwork, deadlines, phone calls, evaluations… the county, the state, the school district. This shit wouldn’t get done without my obsession with, for lack of a better term, getting shit done.
I think I fixate so much on how Lucy is changing my life… about the positive ways she’s impacted me. I give her so much credit for living in a world that doesn’t always make sense to her, for working hard on tasks we often take for granted. I give her so much credit for her infectious smile, love, and happiness that changes the way people view others with disabilities.
I fixate on her so much I often forget that I, too, have role in her success. I play a big part in who she is and who she will become. Which is a terrifying and beautiful honor all at the same time.
The truth is… it will all be fine in the end. Will I worry myself into hives and sleep deprivation? Likely. But that doesn’t take the fight out of me. So rather than focusing on the unknown and the worry of what is to come… I’ll let the Beast take over and fight for what she needs and what she deserves.
I am Mama. Hear me roar.