Learning to love again

Butler FamilyThis guest blog post is written by Josh and Katie Butler. The Butler family has one adopted son, Braxtel, and is in the process of adopting a sibling group of three. They have also provided respite care to foster families on several occasions. Their only biological child, Dewey, passed away when he was 132 days old from complications connected to a genetic disorder.

Two months after our son passed away from a genetic disorder, my husband, Josh, and I decided to pursue foster care adoption. We knew from our experience in the neonatal ICU that there were sick children in desperate need of a family and that we had love to give. Both of us wanted to be parents and fill our home with children.

On one particularly emotional Wednesday afternoon not too long after Dewey died, I prayed especially hard to God to grant us more children. The very next day, through text messages and phone calls with a social worker, we found out about a baby who was very ill and who needed a family. I knew that it was God’s work, moving together the pieces of our lives. As a couple, we chose right then and there, before we knew his medical needs or what he looked like or even how old he was, that we were going to be this baby’s parents. We even picked out a family name (Josh’s great grandfather’s name) before we met him. Even though we knew that he was going to be our son, the first time we saw him and learned how sick he was, it was a shock. He was diagnosed with prematurity (27-weeker), pulmonary hypertension, chronic respiratory failure, trach/g-tube, vent dependent and severe developmental delays (and this list is not exhaustive). It was hard to be back in the pediatric ICU, where we had spent so much time with Dewey. This time, though, we weren’t parents of a patient. In fact, because we weren’t even his foster parents yet, we had no rights or influence at all over Braxtel’s care.

Nevertheless, the medical team recognized how important it was for Braxtel’s health to form a bond, as he was already 11 months old with no significant attachments. We received special permission to visit with him in the hospital as we completed our foster classes from November to February. However, despite the fact that we were certified to foster, Braxtel was not yet healthy enough to leave the hospital. After a few more weeks of waiting, we finally made the trip home during a February ice and snow storm. Again, because Braxtel’s health was so fragile, we were not allowed to take him home in a car seat in the back of our car; rather, a medical team escorted Braxtel and his equipment home for the first time via ambulance. At last, Braxtel was home, and our six-month waiting period started before we could officially adopt him. By the middle of September 2016, we went to court and legally changed his last name to Butler!

Our relationship with Braxtel and both his medical and foster teams was a strange arrangement, and we know God’s hand was in all of it. Here is what was happening behind the scenes, before we were ever contacted: Braxtel was living in the hospital, and his social worker was desperately looking for a foster family for him because his biological family was unable to care for him. His medical needs were so great that the requirements for a foster family were very specific. The family had to be within 30 miles of Vanderbilt Children’s Hospital, have no pets or other children, and have two caretakers in the home at all times, including a 24/7 home health nurse. The foster family had to be trained on all his medical equipment (feeding pump, ventilator, oxygen concentrator, suction machines, etc.), including a feeding tube and trach. Even though we hadn’t yet started our foster certification classes, Braxtel’s social worker reached out to us to see if we would be interested in fostering and adopting this sick child. God knew that we needed Braxtel as much as he needed us.

The biggest JOY has been seeing God’s healing work in Braxtel – physically especially, but also in his precious spirit. Brax is the happiest child, and he works SO hard at everything without complaining (except occasionally in one of his many therapies). Braxtel is already off the ventilator, eats and drinks everything by mouth, is off his oxygen most of the day, and is down to just a few medications. Although he is still developmentally delayed, he improves every day. We are proud and blessed to have been chosen to care for this little one, and we are excited to watch Brax thrive as he continues to grow!

Josh recently competed on NBC’s American Ninja Warrior. You can learn more about their story here: https://www.today.com/popculture/american-ninja-warrior-contestant-josh-butler-has-real-life-us-t114776