"Moebius Syndrome Conference..." - Oct. 6, 2012
Since bringing our precious Hannah home in December of last year, we’ve had so many amazing experiences as we've watched her grow and develop... but we’ve also had to a LOT of medical appointments, surgeries and tests. Although there have been some sobering moments where we’ve learned more details about how her syndrome will affect her throughout life, God has filled us with so much hope and enthusiasm for the future, especially in seeing the confidence and determination that radiates out from Hannah’s vibrant personality. To say that nothing holds her back would be an understatement; she is truly a conquerer and a girl who knows how to take charge of a situation!
After our last blog post in May, life has become quite a roller-coaster in terms of medical appointments and procedures. We did get a short break in the spring, following our weekly out-of-town casting appointments, but then we spent most of the last four months back on the road, driving all over Northern California for additional appointments, tests and surgeries. Despite all the doctors we've met with, and all of the specialized care Hannah has received since we brought her home last year, the biggest step of her medical journey happened this summer when we traveled across the country. On July 12th, we boarded a plane and flew to Philadelphia, PA to attend an international medical conference for people with Moebius Syndrome. The conference only takes place every other year, and is an incredible opportunity to get first-hand information about Moebius Syndrome from some of the leading researchers, doctors and therapists who are studying the syndrome. But more than seminars and consultations, it was also our very first chance to actually meet other people with Moebius Syndrome!
Walking in to the first session at the conference was incredibly overwhelming for both of us. For 18 months, Hannah lived in an orphanage, and although we know she was loved and cared for, many of her symptoms went unnoticed, and therefore were never diagnosed. She had been characterized by her “expressionless” gaze and was labeled as “unsocial”. But now, eight months later, on the other side of the world, we had the privilege of watching her enter into a group of people where she was seen as perfectly normal. It made us think back to the seemingly random course of events that had led us to Hannah, and how God, in His divine wisdom, planned for her to be adopted into our family. His plan is always perfect, and we felt the full weight of that as we watched Hannah being accepted, and even celebrated amongst perfect strangers who understand the realities of living with the same medical conditions and differences that she has.
The conference only lasted for two and a half days so we were constantly running back and forth between seminars, consultations, research projects and mealtimes, but in the midst of it all, we got to meet so many other parents with children the same age as Hannah. We even got to know three separate families who have also adopted a child with Moebius Syndrome! We really enjoyed the privilege of hearing a presentation by Dr. Francis Collins (Director of the Human Genome Project) and we loved meeting Rick Guidotti (a famous fashion photographer turned special needs advocate), but more than anything, the talent show on the last night of the conference was the best part! Anyone with Moebius Syndrome could get up and preform for the crowd, and of the children, plus some adults, had practiced their acts all year long; it was truly inspiring being in the audience and seeing the courage and talent!
Because we had tried to optimize our time at the conference, we chose a divide-and-conquer approach for the different seminars and therefore experienced different emotions, personal encounters and information. It wasn’t until the flight home that we finally got a chance to talk about what we had each learned and experienced. We quickly realized that we had each independently come to some of the same conclusions. For starters, we realized that Hannah has a long journey ahead of her in terms of therapy... probably more than we had ever imagined. As a result, we’ve really ramped-up our efforts to get her additional speech therapy and OT/PT, plus we’re hoping to add ASL tutoring in the near future.
Another thing we realized at the conference is that Hannah’s biggest challenge in life won’t be medical issues, but instead will be social stereotyping from others. Although that probably seems obvious, we were surprised that we each had to work hard at not forming subconscious opinions about the cognitive abilities of people we met at the conference. We know better, and yet it's so easy for the brain to size someone up when a they can’t make eye contact, have slurred speech or can't form a facial expression during a conversation. It was an embarrassing thing to admit, but it made us realize that we need to do more to help educate other people about Moebius Syndrome. In addition, we heard story after story about people who had experienced teachers, therapists and even doctors treating them as if they had cognitive delays, just because of the difference in their outward appearance. This issue has really become one of our new passions... to do everything we can to help people in Hannah’s life understand so they won’t automatically judge her. Instead, we hope they will treat her the same as any other child, because she really IS the same as any other child!
In summary, God has led us through some amazing experiences in these past ten months. Hannah’s presence has brought so much joy, passion and amazement to our lives, just like we’ve experienced with the adoption of each of our other children. In addition, adding Hannah to our family has taught us so much more about the special needs community as a whole, and especially the effort to have all people with “differences” accepted and welcomed in our society, just like our Heavenly Father accepts us as His perfect children.