SOFT or Support Organization for Trisomy 18, 13, and Related Disorders has their 22nd Annual Conference here in Denver this week. I am a late-comer to the event committee, and have had the pleasure of meeting so many families whose babies are living with, or were lost due to Trisomy in its various forms.
When our daughter Rowan was born with Trisomy 18, we had no idea what that was, or what it meant. Our doctors were absolutely fabulous with information, and basically told us that they couldn’t really say how well or poorly she would do. A little observation and some tests revealed that Rowan was quite affected; she had many of the internal defects that are typical of her condition and was not expected to survive.
Rowan died when she was one day old. Having a child with this diagnosis and then losing her so quickly has made for a lot of “what ifs” for me. I cannot look at a child with Down syndrome (which is also a Trisomy disorder) and not wonder what it might have been like to have her here with us. Granted, T18 is not the same as Trisomy 21 (Down syndrome) but it is much more likely that I will run into a child with Down syndrome than with T18, and so it never fails to make me wonder.
The SOFT conference has lots of activities over the course of this week. Yesterday I was volunteering for the medical clinics at the new Children’s Hospital in Denver. Holy smokes what an incredible facility! At the hospital there were doctors who made time to see the SOFT families and their children and have checkups, special needs consults, feeding, eyes, ENT, dental… you name it. My job yesterday was to be a host to a few families – making sure they got to their appointments on time without getting lost, and just hanging out with them in the event they needed anything. Everyone was from out of town.
I drove down to the city with butterflies in my stomach, worried that I would be too emotional, too close to my own experience. With me and my group, there were three children with Trisomy 18, ages 3 years, 6 years, and 28 years old. This is incredible when you understand the statistics of T18, and it also proves that the world doesn’t really understand everything there is to know about this condition. But, I didn’t post to get on my soapbox about T18 and the world.
I wanted to share how amazing it was to be able to spend so much personal time with these kids and their families. I was unsure how it would be for me (emotionally) to be in that position, given the fact that Rowan wasn’t here and never had much time with us. It took about 10 seconds – to meet and introduce myself and at once stop seeing the diagnosis and fall in love with these children.
There are hundreds of people at the Conference, with all sorts of disorders related to Trisomy. The dinner was crowded last night. My friend Carol (whose daughter also had T18) saved me a seat at her table and I got to sit next to a another little one (17 months old) with T18. Her mom seemed so young.
I got to meet and spend a lot of time talking to Dr. John Carey – who does a LOT of work in the Trisomy 18 world. While talking to Dr. Carey he said something about caring for one family, and I was reminded of and told him about our experience with Dr. Manchester, who diagnosed Rowan the night she was born and was so good to us during our consult. I mused that if I could only see him to tell him how special he was to us… Dr. Carey says, “Well, he is right around the corner.”
I was shocked! I had no idea he was a part of these clinics, and it was so cool to be able to tell him how wonderful he was. It was even more shocking that he recalled our daughter’s case from 1999 (from a clinical perspective) and told the story to our little group about the way they diagnosed her without knowing for sure, and then got the confirmation later with blood results. Rowan – a celebrity! ;)
I drove home with a giant grin on my face, happy for the chance to be with all of these special families and their amazing children. I know that a lot of the wondering (for me) revolves around how it would have been if Rowan had lived. When she was born, her diagnosis fell into the background when I saw her and held her – she was my baby and I loved her – plain and simple.
But along the way I separated that from the picture of her surviving. Perhaps that is a defense mechanism of the brain? Whatever it is, having never experienced caring for Rowan, the words that came to mind when I thought about raising my daughter if she had survived were words like hardship and sacrifice and exhaustion. But now I see that I didn’t get it. Of course there is this precious little one who is so very loved, and everything else takes 2nd place. I know it cannot be easy, but as one mom said with a smile and very matter of fact: you just do it, and adjust.
That reminds me of talk at our bereavement groups: We “laugh” at this crazy notion that non-bereaved people seem to have of us who have lost a child and how we must be so strong. How they could never survive losing a child if it happened to them. But, the fact is that nobody – if they were given a hint of the future – nobody would say they can handle it (whatever the giant shit-hitting-the-fan “it” is). And yet you can, and you do.
I was wiped out, it was an emotional day. I have so much more to share. Tomorrow is the picnic, balloon release memorial, and banquet/auction event at night.
But for now: My cup runneth over.