48 Days: Adopting a Child with a Terminal Diagnosis

Written by Ruchala Bone

We knew early into our marriage that foster care would be part of our story, we just never dreamed it would look quite this way. Our oldest biological son was born with a heart condition that left us in the hospital more often than not during his first year of life. It was there our eyes were opened to the vast need for medically fragile foster homes. During one hospital stay after his open heart surgery there was a child a few rooms away that was often alone. We were made aware that there is almost always a child that could have long left the hospital if a foster family willing to care for their medical needs could be found. And yet, this child stayed far past necessary, with no family able and willing to step in and care for him. My heart broke, imagining my son all alone, without the comfort of a parent through procedures and appointments. It broke again trying to imagine what it might be like to parent a child with disabilities without the support system we so fortunately had. Although we knew we needed time for our son to heal, we knew God was leading us to medically fragile foster care.

Two years later we took the mandated classes and became a licensed therapeutic foster home. Our license was approved, and the same day we received a call that there was a little boy waiting to be discharged from the pediatric rehab he had been at for several weeks. I spent a few days training with his medical team, and we brought him home. Over the next several months, we walked alongside his biological dad through countless appointments and therapies until they were able to reunify. It was a blessing to see the system work in this way, to support their reunification, and be able to see them continue to thrive. Over the next three years we would welcome two more boys into our home, and both would eventually join our forever family through adoption. We received a call for our son Maurice, who was 16 months old at the time. He had been in the hospital for 6 weeks while DCS searched for a home willing to meet his needs. We said yes, and spent several days rooming with him at the hospital learning how to care for end stage kidney disease and his g-tube. Over the 3.5 years he was in foster care, a beautiful relationship was cultivated between our family and his, and we continue to have a very open adoption and navigate many of his
needs together.

In April of 2021, we received a call asking if we were able to accept a 2 month old who had been in the hospital for 42 days and was in need of a family. The next day we met our son Everett, and spent time in the hospital with him learning how to care for an infant who was blind and also had both cerebral palsy and epilepsy. We had never cared for a child with those specific needs, but we had resounding peace in bringing him home. In March of 2022 we officially adopted our sweet Everett, knowing he had a life limiting condition and was under hospice care. Everett died 48 days later, in our arms and most importantly in a home that was bursting full of love for him. I treasure the 14 months we loved him earth side, though it stretched us beyond what we ever imagined, beyond what we would’ve ever considered ourselves capable of handling. Knowing and loving him continues to be one of the biggest blessings of our lives. Choosing to be a medically fragile foster home is rarely easy, and there are often sacrifices that have to be made on our part to best serve the kids in our care. As I write this, Maurice is on dialysis nightly, and we are waiting on a kidney transplant. The past four years we have spent more nights than I can count in the hospital. There have been dozens of surgeries, hundreds of appointments, and we’ve learned to provide more medical care than I ever dreamed we would need to provide. Yet somehow, it all pales in comparison to the love, to the absolute privilege we have in getting the honor of joining in their stories. We entered foster care thinking we could
help bridge a gap for kids in our community, but truly it’s us who have been blessed and changed by them.
Our family, our boys especially, are a testament that all kids, including those with extensive medical needs and disabilities, thrive in homes, not hospitals or institutions. All children deserve to be in a family that advocates for them in appointments, holds their hands through procedures, empowers them to be a part of the community around them outside of hospital walls, and deeply loves them for all that God created them to be.

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