She’s working on eating with a fork. She says about 12 words and is learning more every single day. She likes cheese and bacon and she shouts “MINE!” a lot.
It’s probably natural to look at how well she’s doing and think ‘Well, she looks sensational. Thank God that little heart thing is behind her.’ I don’t fault people who say that. Heck, occasionally, I catch myself thinking it. Then, I pump another dose of meds into her and have to check her oxygen saturations because she looks a smidge more blue to me and all the sudden I remember.
Yeah, this ain’t over.
We are in the process of having Dolly declared disabled so that she can receive Medical Assistance as a secondary form of health insurance. When our pediatrician first suggested this to us, honestly, I bristled. I didn’t like labeling her ‘disabled’ and I sure as heck didn’t want a hand out. I pay my medical bills. I have good insurance. Why would we need this? Well, turns out insurance for a kid like Dolly isn’t always as good as it looks. We have now accrued nearly $10K in medical expenses.
Turns out, applying for secondary coverage isn’t as easy as it looks either. Finally, we had our home visit yesterday from a Case Manager who seems to understand where we’re coming from. While we can pay the medical bills, I worry a lot about Dolly’s future. When she isn’t allowed to be on our insurance anymore, will she be able to pay her medical bills? What if I lose my job? We need a backup plan. To get this backup plan, there is a whole lot of paperwork. I don’t mind. They should make sure that Dolly’s condition is what I say it is and that she really needs this type of program.
The hard part wasn’t gathering that paperwork, although I won’t lie, it was a little ridulous, the hardest part was reading it and reviewing it. Our pediatrician wrote a very nice letter about Dolly’s heart condition, all the secondary problems it has caused for her little body and what her likely prognosis is.
It is highly likely that, unless major medical advances occur, this patient will require a heart and/or lung transplant in the future.
And there’s my reminder, yet again, that this isn’t better. And, beyond the nearly physical pain that it causes me to have to read those words, we do fall through the cracks a little. Dolly looks GREAT. She looks like your average 12 month old. Unless you know she is 27 months old and can see the huge zipper-like scar she has running down her chest, you would think she is a pudgy-ish, happy baby. So, when you try to explain to someone why she’s ‘disabled’, why she isn’t just ‘better’, it’s hard for them to understand.
She’s on this Earth at all because she has this stubborn will to survive. It’s because she fought so darn hard to make it to her family. She’s an ornery little thing who wants to get better. So consequently, FPD and I have taken on the philosophy that she did her part by just staying alive until we could find her. Now, it’s our turn to bear the burden. She fought enough all by herself, now it’s our turn to fight FOR her. We spend over three hours each day coaxing her to eat, trying to avoid having to tube feed her, so that she gets in the calories she needs to grow enough to be able to have her next surgery. Some days, she eats cheese and bacon. Well, you go girl. Right now, we let her. We spend over an hour each day doing various PT exercises with her to strengthen her legs so that, hopefully, by the time she’s three-years-old, she might walk. We spend about another hour each day pumping her full of medications that keep her heart going steadily, take the fluid off her lungs, and maybe, just maybe, heal them. That’s five hours, sometimes, more per day spent solely on caring for her. That doesn’t factor in all the time spent sitting in specialists offices waiting for our next set of instructions.
Yeah, I have to own it, she’s disabled.
Getting someone else to see that is a different story. I’m in this tough spot of feeling very defensive about what we do for her and wanting others to view it as normal. We do a lot. Not anymore than I hope any other parent would do, but it’s a lot. I want someone to acknowledge that, yes, without us doing all this, she would need to be hospitalized, therefore, she is disabled, but at the same time, I don’t want anyone to actually call her that because otherwise it brings out the mama bear in me.
I think I’m where every mama is of a kid who has a chronic illness. The difference is, I was dropped into it overnight. There was no 9 months of pregnancy to understand what it would mean to have a ‘heart baby’. There wasn’t top notch medical care for her when she first entered this world. I think while physically she is doing great, emotionally speaking, we’re all still catching up. I need to give myself time and cut myself some slack. I hate crying, and I don’t usually do it, but I think I might need to. But, most of all, I need to remember how very worth it all this truly is.
who is lucky enough to be mom of one very amazing little girl, disabled or not.