Wanna know how financially devastating it is to have a kiddo with DBA?

Well, I accidentally let our Medicaid expire on May 31st. I now have 4 bills totaling $6,417.05 from ONE day at the hospital, kindly requesting immediate payment, as they have generously extended a 35% discount due to lack of insurance.

Yup, that means the hospital bills $9,872.38 for one day of necessary, life-preserving care for my kid.

Of course, that’s not what we (or our insurance) is billed EVERY month. This month we also had the MRIs under sedation.

For each of the other 11 months out of the year, if we didn’t have Medicaid, we would only be billed $2,200.25 (and that’s with the 35% discount).

(Well, okay. More than that. That’s only the amount for the blood transfusion, and doesn’t include our other random necessary care, like hemoglobin finger-prick tests to determine if she needs the transfusion yet.)

I qualified for Medicaid one year after Adahlia’s first trip to the hospital. This happened after I had spent four years just racking up debt in grad school (getting a 4-year professional medical degree so I could help people) with no substantial income.

This is why everything I had saved from living very scrupulously in my 20s during my military service (upwards of $40k) was instantly wiped out within 2 years of her birth.

And why, even as I have been earning a little more every year, we parents of kids with DBA have to adjust to a new idea of what both our present and future look like. Because oh yes, as I earn more, I am expected to pay more and more of those expenses every month.

In other words, I actually gain nothing by working, except the satisfaction of contributing to society. Which is cool. I love to work. I work because I like to contribute to life. But unlike most people, when I work, I don’t get to watch my bank account grow, or feel “more secure,” or plan a remodel, or take a trip to a wonderful exotic location. I’m in more debt than… I don’t know what. And quite honestly, if she is never cured, I’m not sure how that’s ever going to change.

I’m not writing this post to complain. Some conservatives would argue that my child is a burden not just to me, but also to society, and should have been allowed to perish. Liberals would say that such ideas are an outrage, and we should have free, quality healthcare for her, so that our family doesn’t have to forfeit… well… quite so much.

Truth is, my little one is very intelligent, very creative, and likely will contribute a great deal to society. Will it be worth all the investment society is making in keeping her alive? I’m certainly not the person who can make that call. But I do know I’m lucky to have her at all. And it still blows my mind that we have a house to live in that she can call her home (it was truly the hand of the Divine — by all rights, we should be living in a Section 8 apartment).

Don’t worry — everything’s okay. I got the Medicaid reactivated last Friday, and I’ll be making calls all this week trying to get all these bills sorted out. And I’m sure it will.

I’m not complaining. I swear. And I certainly don’t want anything. Not pity. Not money. These are just the facts.

And I just find them a little mind-blowing. I just think its kind of crazy that I suddenly now owe over $6,000 to have my child be “topped up” with blood so she can live another month, and checked to make sure she won’t die a silent death from iron overload.

And every month, to keep her, if Medicaid went away or I started making MAD cash, it would cost me over $2,200. (Oh wait. These figures don’t include Exjade, her chelation medicine. I haven’t yet been billed for that. I think her Exjade would cost about $500/month without insurance.)

So altogether…let’s say I need to budget $3,000 each month for 11 months, and allow for one “mad month” of nearly $7-8k in medical expenses. Indefinitely. For her life.

How much would I have to earn in order to pay for her as well as clothes, food, shelter, transportation, a minimum school loan payment, and utilities? And… just for kicks… maybe some of the life perks that I used to save up for, like travel or investment? (In my 20s, I used to put $300-500 a month into investment funds.)  Anyone good at math?

If it weren’t for Medicaid (and for Joe putting the roof overhead and food on the plates) I would just be standing on the hospital sidewalk with a pale, limp child in my arms and a lost expression on my face, waiting for someone to do something out of the kindness of their hearts, or for her to die.

I just think its all just a little… amazing.

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This post was originally published on Facebook.  However, I migrated it over to WordPress because I think its something the general public needs to be aware of.  Why?  Because many people are very opinionated about things like healthcare, and welfare, etc.  And I think that perhaps they are so opinionated because they don’t actually know — and by know, I mean live — a life that needs paid healthcare.

Personally, I have no opinions on healthcare.  I don’t have the luxury of being able to sit back, un-involved, having a theoretical opinion of what people do or do not deserve.  I don’t claim to be so smart as to be able to say what should be.  I just know what we need.

So, personally, I’m just glad that what is, is.  I’m just grateful that Adahlia and I live in the precise time and place that we do, and because of that one amazing, simple fact (that is certainly not something I arranged, and belongs only to the goodness of God), we have Medicaid, and a roof, and other essentials, and we are making it work.