December 14th is the worst day. It’s the day Parker was diagnosed with a rare blood disorder, and almost lost his life. I’m forever grateful for his continued remission and every day I watch in wonder as he grows into one of the most beautiful souls in the world.
Parker is a lot of things. His heart is as big as the moon. He’s brave. He’s kind and giving. He is wise beyond his years. He protects. He always does the right thing. He, through his very being of selflessly giving and endlessly helping, reminds me that this world, MY world, needs him.
I love every minute of watching him grow into the kind of human I’m so proud of.
If you’ve met my son, you know what I mean when I say he loves big and tries to make everyone feel included, loved, appreciated, respected and welcomed. He so often snaps me out of my judgmental, often harsh, angry view of this world.
And it is through his example that’s led my heart to be so passionate about helping others. It forever humbles me to be kinder. Listen more. Give more. Be better.
I can’t imagine a world without him in it. I probably would be a much different person than I am today.
With that said, I’m going to be truthful and blunt and open about something that may show you why I’m so passionate about politics and humanity as of late. ( so feel free to stop reading here but I encourage you to keep going)
I went back and looked up hospital EOBs and made a short, not even fully complete list of Costs and procedures Parker had during those first few months( this does not include the outpatient visits and tests not done inpatient):
Room/board in peds icu unit- $9450
Room/board in peds hem/onc (27 days) - $150,120
Blood transfusion (7 total) - $1872
CT scan of abdomen- $3350
Lab total cost ( total of 87 draws with 8 tests each draw) -$52,200
Rituximab infusion med only ( 3 total at 11,321 each ) -$33963
Misc supply/procedure code/hospital charges-14,456
$265,411 dollars to save my son.
When Parker was diagnosed, we were still young. We didn’t have health insurance at the time. We made too much for most Medicaid plans. And we had to utilize some of the same programs that CHIP ( Children’s health insurance program) offer for families in need like we were.
Am I ashamed to admit this? No. In fact, I hope it can let you make a real human connection to something to empathize and learn more about it, before dismissing it.
I want you to maybe see: * not all people who utilize programs for help stay on it for life- Most use it in dire situations, like we faced. *with CHIP being defunded, these bills, would have devastated our life. A newly married, young, dual income, hard working family would be faced with life altering bills that would forever impact their life.
Also, with just 3 months of hospitalization, Parker was already 1/4 to his Lifetime limit. At the time, the ACA was not in place, which made it unlawful for insurance companies to put a dollar amount limit on how much they’d cover for your lifetime. It also would have labeled Parker as having a serious preexisting condition- which would allow insurance companies to deny or inflate his healthcare costs for life, before his second birthday.
AIHA is a chronic, rare and often relapsing condition. As a mother, thinking about Parker getting sick wasn’t just a fleeting fear. It was literally wondering if I could afford to keep my child alive.
I’m not telling you this to debate. I’m not rambling to try to solicit sympathy or convince you to change your opinion. I just want you to put a face to all the things y’all are so quick to dismiss and look down on.
I’m just trying to say, it all matters. We are all connected. I’m a white woman raised with privilege, and currently make well above a level that would qualify for CHIP now, and I’m ( for now) able to sleep knowing ACA hasn’t been dismantled enough yet to affect me or Parker in the present. I am blessed to have all bills paid, a roof over my head and food on my table, wonderful health insurance and comforts many don’t. I can’t begin to understand some of the bigger issues many others face everyday just for where they come from, what they believe or who they love.
And most importantly a healthy, strong amazing child.
But all of these things, can be taken away. That’s why I can’t sleep at night. That’s why I worry about laws and bills and legislation. Not because it’s become the cool, fun thing to do on social media. Not because I need something to write about or people to give me head pats for.
It’s because of Parker. And as he woke up this morning, as I sat crying writing this, and he asked about what I’m writing about, and I replied,
“I’m writing about you. And the world. And how it’s kinda scary, all this adult stuff.”
And he said Back,
“Oh momma. Don’t cry. I think it’s okay to be scared. I get scared a lot. But you tell me to be brave. And you’re always brave. And you’re always nice. I think if we are all brave and nice the world will be okay.”
And that boy, who some may put a price tag on his worth, is priceless to me.