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On an otherwise uneventful Friday in late November 2015, I opened my email to find a message about a little boy from Ann Morrison, the director of the domestic adoption program at Barker. He was two years old, had big beautiful eyes, lived in China, and was diagnosed with hemophilia. My husband and I were approved and waiting for a domestic adoption match, but Ann knew that our hearts were pulling us toward adopting a toddler and Barker was hoping to find that little boy’s family quickly due to his medical needs, so she sent us a little information just in case. My husband opened his email at nearly the same moment and we immediately began messaging back and forth.
Did you see?
Reading now. Cute boy.
Really cute. China?
Did you see his little feet?
Yes! Is it just me or are those the cutest feet ever?
Do we qualify for China? Man, he is really cute.
He looks very smart.
Yes! And sensitive too. You can just tell.
Can we afford to adopt from China?
Neither of us knew much about hemophilia. I remembered some mentions of European royalty passing it on from my high school European history class and that I saw a talk show during the 1980’s with some teenage boys who contracted HIV while getting treatment for hemophilia. Neither of those memories gave us much comfort. Hemophilia sounded big, maybe too big. Was it too much for us to handle?
Thus began our weekend cram session.
We scoured the internet.
First off we learned that hemophilia is a blood disorder. It’s genetic and usually hereditary, although spontaneous mutations can happen. People with hemophilia are usually male and their bodies don’t make enough (or any) of one of the proteins needed for their blood to clot properly. There are two types, A and B, which one is diagnosed depends on which protein is missing and there is a range in severity for both types. It’s serious and there is no cure.
We saw a lot of scary stuff, but there was a lot of good news right away too. Treatment has improved dramatically over that past thirty years. Today, children who begin receiving regular treatment as toddlers can expect a normal life span and a high quality of life. Many people with hemophilia use medication that was created in a lab and doesn’t rely on any blood product, thus eliminating the risk of infection. Screening of blood donations has improved as well, so those who use blood products are also much safer than they were in the 1980’s. We even found a blog post from a woman who had adopted a little boy with hemophilia from China only a year or two earlier and saw that little boy was thriving. It was all very reassuring, but it was still...big and I was a woman who had passed out donating blood more than once. Saying that I had a “thing” about needles and blood was probably an understatement. Could I be a good hemophilia mom?
We messaged Betty Betz, the caseworker for international programs, on Monday. If I had given birth to a son with hemophilia, I’d have learned to be a good hemophilia mom. I’d have gotten past my own “things” in order to take care of my son. I could do the same for this son. We officially switched programs and received pre-approval to become that little boy’s parents in December. We traveled to adopt him and bring him home six months later.
I don’t want to trivialize the importance of considering which special needs you and your family can handle. One important consideration for us was our access to a good pediatric Hemophilia Treatment Center. We live close to multiple world class hospitals, including a children’s hospital with a respected HTC. We researched our health insurance policy and made sure he’d be covered. I joined a facebook group for adoptive moms of children with hemophilia. Yes, there are groups that specific and they are an excellent source of information and support. So, we did our homework, but mostly we just decided that we weren’t going to be scared off by the label, special needs. All kids are special. All kids have unique needs.
I want families to know that even a need that seems big can just become your new normal, and it will probably happen faster than you think. We’ve been a family of three for about eight months and the hemophilia stuff has been both easier and more difficult than we anticipated before we brought our boy home. It’s hard to picture since every kid and every case is different. There were some complications during the first few months, but things have settled. Now, we keep a go bag with toiletries and clothes in the car in case our son has to spend the night at the hospital because that happened a few times last fall. But most weeks our only hemophilia-related activity is giving our son an infusion to replace the protein his blood is missing. We currently do that every other day. Yes, that involves a needle and yes, I do it most of the time. It takes me about ten minutes and, now that we have all gotten used to it, there are usually no tears from any of us. It’s just something our family does, like grocery shopping together, reading books at bedtime, and singing along with Frozen.
Our son is sweet and silly and he is growing up way too quickly for my comfort. He loves to snuggle and, when we go to the park, he likes to pretend he is a fire truck who rescues cats and delivers ice cream. He adores trains and dinosaurs, likes knocking down block towers as much as he likes building them, and he does a variety of very impressive animal impersonations. His favorite number is five and I really don’t know why. He is a bit of an enigma. Our son is special in a million ways; hemophilia isn’t even on the top half of the list.