Being a parent through adoption is both the greatest blessing and the most terrifying experience. It feels like yesterday when we finally got the text at 3am that our son was being born. Joe and I jumped on the first flight out of Greenville that morning and made our way to Nebraska. He was a few hours old when the nurse brought him to us – so tiny and perfect. We spent the next 48 hours in a hospital room loving and caring for him; while also enduring excruciating anxiety wondering whether he would really get to be ours. When we were told that he was leaving the hospital with us, there were many tears of joy and gratitude. His birth mother made the most difficult and selfless decision, and we are forever thankful.
It wasn’t until Reynolds’ three month appointment that we began to notice something wasn’t quite right. His head was measuring smaller than it should have been, but there weren’t any clear indicators as to why. The next three years of Reynolds’ life looked very different than we expected for our new family of 4. We took him to what seemed to be every pediatric specialist in town. There were symptoms in many different areas, but no one could understand the cause or determine a diagnosis. We knew Reynolds had global developmental delays, he was not meeting milestones that other kids his age were, which resulted in more appointments and early intervention services. As he grew older his speech was the most significant of his delays. We did receive a diagnosis of Autism through Developmental Pediatrics; however, his exuberant, friendly personality did not fit the typical, most well-known behaviors of most children with Autism and it didn’t explain all of the medical concerns.
It wasn’t until he was 5 years old that one of the tests resulted in an unexpected phone call; they’d found something else. I was in Whole Foods looking at oranges (I will never forget the moment) and the social worker explained that Reynolds has White Sutton Syndrome. She told me the most common characteristics include difficultly with speech, gastrointestinal problems, Autism, intellectual disabilities, and an overly friendly personality. This syndrome is extremely rare, at the time there were about 80 people worldwide and he was the only one in SC. I was stunned. You never want to be the patient with something the doctor hasn’t seen before. The medical exam room is the one place everyone wants to be basic and unnoteworthy. That phone call left us feeling such sadness and anxiety, yet also some relief that we finally knew what was going on with our sweet boy. It is lonely and scary to try to navigate what is best for your child when the professionals have never seen anyone with his condition. He continues to face many medical tests and changing plans on how to best care for him. The blood tests, MRIs, EEGs, bones scans, sleep studies, and surgeries are all so much for a little 7 year old, but he continues to grow and love life.
I wish I could say that the sadness and anxiety have been replaced with complete faith that all will be fine for him in the future. But I can’t. I do know that he is exactly who he is meant to be and exactly where he was mean to be. To know Reynolds is to love him. He has an incredibly deep and tender bond with his older sister. She is more loving and patient with him than we could ever ask, and he adores her. He has a joy for life unlike anyone and that joy is contagious! He has never met a stranger, makes people laugh with amusement, greets everyone with an enthusiastic “Hi!” and has a smile that lights up a room. He will do big things, but in his own time. He reminds us daily that we are working with His plan.
I am so thankful that KIND is here and that we were asked to share our story. Now that Reynolds is getting older, he’s beginning to discover that things are often more difficult for him than other kids his age. To a stranger, Reynolds looks like a typical 7 year old, but developmentally he is functioning years younger. His excitement and exuberance can be puzzling for other children and adults, and I believe educating others on how to include and celebrate differences will mean that Reynolds’ unique joy for life is seen as a blessing to experience. We are incredibly thankful to have an amazing support team of therapists, doctors, friends and family who love us so well! These people surround him as if he is a part of their own families and I am so grateful. To the parents that are already talking with your kids about loving and including friends who are unique, we see you and please know the huge difference that makes to children like Reynolds. I love that KIND will help introduce kindness and inclusion to even more families.