Lessons learned.

Sometimes it is important to revisit your past to realize you can handle the future.

Every other year I attend a conference about Smith Magenis Syndrome (SMS). My daughter was diagnosised with this syndrome over 6 years ago and this was my third conference. I am a veteran yet I remain ambivalent. I want to meet people who share similar struggles and have the same questions about the syndrome, but I also have significant reservations about taking a glimpse into my future. My daughter is 8 years old and it is hard enough to accept that she is a little girl with cognitive disabilities but it is even harder to imagine her as an adult unable to maintain an independent life. That being said, the conference is an opportunity for everyone to come together. Young and old, newly diagnosed, and those who have known and lived with SMS for years all come out with renewed hope of making new friends and reconnecting with old ones. We also learn the latest information about the syndrome and hopefully practical life lessons from other families. It is no easy task to bring such an ecletic group together as we are all at different stages of acceptance of the diagnosis and our children are at different stages of development. You see what you may not be ready to see and hear what you may not be ready to hear.

I attended my first conference in 2009. My daughter was recently diagnosed at the time and I had no idea what to expect. I had never met anyone else with SMS before and I remember my experience so clearly when I first walked in the room. I sat down next to an older family who had a son who was 26 years old. At first I was eager to see an adult with SMS and hear about all the amazing obstacles he had over come. He was a wonderful young man who was doing relatively well considering he had a profound disability. The parents, however, frightened me more than the young man struggling with SMS. They expounded on all of the things I would need to do for my daughter and all of the struggles that lay ahead. I do believe they were trying to be helpful but it was hard to see that so early on in my journey. At that moment, I remember that I could not get away from that table fast enough. I heard about Medicaid waivers, group homes, guardianship, behaviorists, respite providers, special needs trusts, and the list went on and on… When the appropriate time came to excuse myself from the table I found a quiet corner in the hotel and began to sob. I was barely at the point in my life where I could comfortably say that my daughter had special needs let alone process the lifelong supports that she would need. The following 3 days at the conference I spent crying behind a pair of sunglasses and watching and imagining my future filled with the burden of caring for my intellectually disabled, behaviorally challenged and incredibly difficult child.

Two years later I came back determined to have a positive experience. This time I made a conscious decision to protect myself. I had a better understanding of the syndrome and made a point to connect with families who were dealing with similar issues. I cried less and connected more. I learned much and left with a renewed sense of hope.

Here I am again in 2014, I walked straight into the room and sat wherever there was an open seat. I no longer needed emotional protection. I had been living with SMS for almost 7 years and a protective scar tissue had definitely formed. I was not afraid to hear what people had to say and I certainly was not ignorant to the long-term challenges I face. My protective armor was off and I felt more open and willing to engage with others. I learned over the years that I have plenty of time to learn about my future and only a short amount of time to learn about the present. The future no longer frightens me. I know it will come one day and when it does I will be ready or at least ready to adjust at the time.

As I left the conference I thought about how far I have come. From sobbing in a corner feeling hopeless and defeated to walking straight into a room with a smile on my face and a strong desire to help others. It is hard to appreciate your growth without looking back every once in while. You need a frame of reference. This recent conference gave me that opportunity. It is invigorating to know that that the cliché “time heals all wounds” is actually true. My wounds have healed and if that family that I met at the first conference was there this time I know I would have been able to politely say, without a tear in my eye, “Thanks for the valuable information. I know I will need it someday but not today.”

Accept where you are and remember how long it took you to get there. You just may be proud of your growth.