These are the posts that are hard for me to write, because we’ve never been good at accepting help. We much prefer to be on the giving end. Long before I had kids, I donated blood and platelets regularly, and I volunteered with the Make A Wish Foundation (now that was trippy to be on the other end of receiving a wish after having been a wish granter myself!). When Bodie was 10 months old, I joined with fellow heart moms and we founded our own nonprofit, Sisters by Heart, to help others newly diagnosed with HLHS. My parents raised my brother and I from a young age to give back, and I’ve always done that. This is all to say, asking for help isn’t really in my DNA. And Dusk is about the most independent man you’ll meet, so asking for help isn’t any easier for him. Our tendency is just to say “no, we’re fine. But thanks for offering!”
But the reality is that, no, we’re not fine.
We’re doing our best in a really tough situation.
But, at the end of the day, that’s exactly what this is – a really tough situation.
Dusk opened up about it recently on his Facebook page, and talked about how difficult it has been to have our household split. Dusk and Sierra are down in San Diego, holding down the fort there, taking care of the house, the myriad of animals (you wouldn’t think it, but, taking care of 2 dogs, 4 cats, a rabbit, a turtle, a fish, 3 ducklings and almost 40 chickens actually takes time!), and still trying to work. And I’m up here with Bodie, trying my best to work while he’s in the hospital, but it’s hard. I’m trying to gain some semblance of normalcy to get work done for clients, but it’s difficult with practitioners coming in and out of Bodie’s room constantly, as well as the unpredictability of his needs during recovery.
It’s all just hard.
That said, it’s time for us to admit that we could use some financial help.
Hospital admissions are expensive.
Heart transplants can be upwards of a million dollars.
You read that right.
Thankfully, we have insurance, but our out-of-pocket costs will likely be close to $60K this year alone. In addition to the medical costs, we’re incurring the cost of having our family living between two different locations, as well as the costs to fly and drive back and forth.
If you don’t know our family well, Dusk and I are both self-employed, which compounds the difficulty of the situation. When we’re not working, income’s not coming in.
And this situation isn’t changing anytime soon.
Bodie will still be inpatient for at least another week. Once he is discharged from the hospital, we will be required to remain up in Northern California for at least 2 months, during which time he will have many more appointments, lab draws and procedures to ensure he is not rejecting his new heart. (Rejection of organs is at the highest risk during the first 3-6 months post-transplant.) And once we are released home, he will have to return to Northern California at least every 3 months, if not more often, for follow-up visits and procedures.
Because of this, we have partnered with the Children’s Organ Transplant Association (COTA) for assistance with transplant-related expenses. Please consider making a donation to COTA in Bodie’s honor right through this website – anything helps!
The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of patients helps meet transplant-related expenses. COTA’s services are free to their families, and gifts to COTA are tax deductible to the fullest extent of the law.
Also, whether or not you’re able to contribute financially, please, please continue praying for Bodie! Your prayers have brought him miracle after miracle, and I truly believe he may never understand the magnitude of the miracles we witnessed while he was on Ecmo and being transplanted. But we do. And we know they all happened because of the army of prayer warriors who have been lifting him up. So please, please continue your prayers!