These two guys are my littlest loves. The curly-topped blonde just turned 4 before Christmas and the booger on the left is approaching two and a half.
We prayed for a long, long time for these two guys to join our family – there’s a nine year gap between our 2nd and 3rd children. Those years were full of hope and sadness, anticipation and disappointment. As we considered our best options for growing our family (fostering, adoption through an agency, adoption through word-of-mouth – tried them all) – the waiting, waiting, waiting and the money, money, money drained us emotionally and financially.
We proudly stated from the beginning that we “just wanted to offer a loving home to a child in need”. It shames me to admit it, but that wasn’t an entirely benevolent claim. Yes, we wanted to add a child to our family, but when offered opportunities that could have been “hard”, we sometimes chose not to be presented as an option for the expectant parents: a not-yet-born baby whose mother had admitted to heavy alcohol use, unspecified prenatal drug use, a birthfather in prison who likely wouldn’t be on-board with an adoption plan. Deep inside, I didn’t want the unknown. There was a fear of “what if” and “can we handle it”. It was unspoken to some degree, but it was real.
That miserably long wait was exactly what it took for my (our) heart(s) to be ready to accept God’s plan, to take a leap of trust and faith and hope.
We were less than a month from ending our adoption quest, deciding to be content with our little family of 4, when we received a call from a friend about a baby in need of a home. This little guy (Oscar is what they were calling him) was 7 weeks old, the previous adoptive couple had backed out, and were we interested. Last tidbit of information: he had been diagnosed with Duchenne Muscular Dystrophy.
Other than watching the Jerry Lewis Labor Day telethons of years past, we had no knowledge or experience with DMD. We researched quickly and discovered the devastating truth: DMD is a debilitating muscle-wasting disease with no cure and little effective treatment. DMD is fatal at an average age of 27 years old (although there is a great variance in this number, some younger, some now living into their 30s and even 40s).
Here’s where God took over – we said yes, without any real hesitation. Yes, we’d like to meet this baby, and yes, we’d like to be considered as adoptive parents. Samuel (our new name for him) came home with us a few days later. It’s so very clear that this imperfectly perfect baby was who God had planned for our family all along.
When Samuel was about 15 months old, I had a serious tugging at my heart and in my brain. “What would happen if Samuel’s birthmother had another baby with Duchenne (50% chance if mom is a carrier)? Would they be able to find a home for him? We were already going to be navigating this path, why wouldn’t we want to bring a sibling home as well?” We let the social worker know that on the off, off, off chance that there would someday be another baby, we’d be open to adopting again. The response was “thanks, we’ll put the letter in the file, appreciate your willingness, haven’t heard from her since surrender paperwork was signed”.
Again, this is God….two weeks later we get a call that birthmom had just been in the office 7 months pregnant with Samuel’s full biological sibling, and was looking to make an adoption plan. Were we interested? Flurry of paperwork and phone calls and five weeks later, Josiah was born. We were able to be at the hospital within 3 hours and roomed-in with him there. It was beautiful to be able to experience those moments since we missed out on the early weeks of Samuel’s life.
Genetic testing was completed for Josiah at 6 weeks old, and we discovered that he too has Duchenne.
Over these last couple of years, we’ve met with specialists and now have a medical team in place for the boys’ care. They are still so young, with few visible symptoms, so there’s not much the professionals can do. Eventually, more than the once a year MDA clinic visit with OT, PT, cardiologist, pulmonologist, neurologist, orthotists, dietician, bone health, etc., etc., etc. will be needed. For now, it’s weekly PT appointments, weekend dosing of steriods, daily supplements, stretching and healthy food.
Do we really understand what this journey will be like? I’d like to think so, but I know that I don’t. We’ll live it day by day and take things as they come. We’ll research and read and attend conferences and raise money for research and advocate for the best care possible. We’ll await news of breakthrough therapies and treatments on the horizon. We’ll pray for strength and guidance. And we’ll love these little boys something fierce.
I’ve had people say how strong we are, or how blessed the boys are to have us, or what an amazing thing we’ve done to adopt these two medically needy children. That’s not it at all. We’re not some sort of superhero martyrs. God prepared our hearts, brought these boys into our lives and we had no choice but to say yes. I’m so glad we did.
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