The Money Blog

i’ve been wanting to talk about the financial impact of Madelyn’s illness and death but i’ve been hesitating quite a bit. One reason I’ve hesitated is that I don’t want to seem like I’m hinting that we need money and trying to pull heart strings to get some. We are doing ok, even with all i’m about to share. another reason is because it is pretty taboo to talk openly about personal finances. But i think that with everything else i have shared openly on my blog, money is the least intimate.

The big reason i want to write this is for the friends and families of other sick children who are following our blog. I want to give context to all of the fundraisers, loans and hard times that are left once a family finally comes home, with or without their baby.

Madelyn’s medical bills totaled close to $1.9 million. My medical bills, including all of my prenatal treatments were close to $100,000. We have good insurance, so our out of pocket is less then $5000, most of which will come out of our HSA.

Additional out of pocket expenses include about $4500 in living expenses while Madelyn was in the hospital. Hotel, travel, food, incidentals. This is on top of our normal mortgage and bills. This does not include all of the money that our friends and family spent in their support of us, but if it did, I image the total would be closer to $8000 or $9000.

Madelyn’s funeral expenses will end up being somewhere close to $4000 once we buy and install a headstone for her. And finally, Luke and I both took the summer off of work, losing about $11,000 in wages. I would have taken the summer off even if Maddie had been healthy, but I don’t make even a third of what Luke makes teaching over the summer.

Like I said, we are doing ok. We knew this was coming and we saved a substantial sum ahead of time. During Maddie’s life and right after her death, we received many generous donations which have helped more then I can say. All in all, we are fairly close to breaking even and hope to start saving again soon. We work daily to honor the intentions behind the donations and are not indulging in much that could be considered frivolous (except maybe an occasional starbucks and my new tattoo).

I think about some of the people I have met through CDH and know that their expenses are comparable to ours, but they didn’t have a chance to save ahead of time. They do not have the support network we have. They still have very sick children who will continue to be expensive for years to come. They ran their own business, were in school or lost their job, completely losing any income they had before their child was born. They are also very modest and humble and grateful for what they do have and would never ask for more.

I think about how I thought of long illnesses before Maddie came and assumed that people just meant medical expenses when they talked about the financial burden. And I assumed that insurance would cover most of that financial burden. It’s hard to imagine how “living” within the confines of a hospital can be so expensive day to day.

I want to close with this: if you are a friend or family member of another sick child, please throw yourself into supporting them. I know you are doing it emotionally. Maybe physically. But if they hold a fundraiser, do more then show up to support them. Dig deep and do without for a while to help them make ends meet. If they aren’t throwing a fundraiser, consider organizing one for them.