SOFT Conference – So much to share.

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.

The Court of Public Opinion

I read this today, and feel like the world has gone completely mad. In this article, A father of three was in a park in the UK taking pictures of his younger two having fun on an inflatable slide. Instead of enjoying the vision of an involved dad taking some candids of his boys, he is labeled a pervert who is likely going to use those pictures on the Internet, darkly.

I recall but as yet cannot locate another news story from the past that totally freaked me out. The gist of it was that a father was changing his son’s diaper, and while he did this, he blew a raspberry on the child’s belly. This was caught on camera by the wife. When the film was processed at a local shop, the shop keeper called the authorities because this was clearly unnatural, and these parents were bombarded by child services who removed from their children and I think they did time for 18 months – because of what amounts to a rush-to-judgment and hysteria. Has anyone read this one? It is a couple of years old by now.

Remembering my mom…

We rented “Grace is Gone” and watched it last night. It is the story of a father, played by John Cusack in a powerfully heavy way, and his two young daughters aged 12 and 8 years – and how he copes with the news of his wife’s death while she was serving in Iraq.

The plot surrounds his inability to tell the children, and how he delays the delivery of this terrible news to the girls by taking them on a spontaneous road trip to a theme park. It is a good movie; quiet and thought provoking. It felt like “a day in the life” of an everyday guy who has to deal with something many of us (parent or not) might find is on our list of things we fear the most.

The point of the movie that we end up dreading is the moment he is finally able to tell the girls the news that their mother has died. I sat there bawling and thinking about my own kids, and what life might be like for them if they had to live through the incredible loss of their dad or me.

It brought me back to the day that my mother died.

I was 27 when my mother died and although I was an adult by most standards by then, in a lot of ways the death of my mother made me feel like those girls in the movie.  Just a little girl who stood there resisting reality and truly uncomprehending as the news was shared. My mommy was gone. It was surreal, scary, and just beyond comprehension that this woman who brought me into the world was dead at 51.

I had the feeling of being a castaway when my mom died. I was like a ship without an anchor just flailing with no bearings or navigation plan. It took a long time for me to get out of the habit of wanting to call my mom every day as we both did while she lived – just to chat and make a date for our next scrabble match (we played almost daily).

I am a lot like my mom, not in my looks as much as personality. I sound like her. I hear her voice when I talk to my kids, and sometimes I see her face in pictures captured of me at certain angles. She was hysterically funny and had an incredibly sharp sense of humor. As I write, I am remembering a fit of the giggles that we had over a particularly long day of playing scrabble.

I shared a lot of similar interests with my mom: Reading, writing, words in general, scrabble, the NY Times crossword puzzle, Mah Jongg, and card games like Cribbage and Canasta. I took up crocheting in her memory, and now I like to knit.

I don’t take a lot of time to honor my mother as publicly as I do my daughter. Probably because it is easier to digest the death of my mother as a normal and expected part of life, as opposed to the death of my daughter which seems to be taking a lot longer to process.

I have less of a need to validate the loss of my mother, because so many people mourn her along with me. It is effortless because everyone understands.

I have been thinking of my mom all day and just missing her. I miss my friend and miss laughing with her. We did a lot together, and when she died I lost my friend as well as my mom.

Patricia Mary Carr
October 12, 1947 – December 4, 1998

Thanks for reading along.

Gimmie a Break!

What’s next… racist cry to crayola to ban certain crayons?

Food Coloring – Dallas County, Texas, official is calling the terms black hole, angel food cake and devil’s food cake racist. Read the rest here under the heading “Food Coloring” about half-way down.

I realize a link to my fave news website might actually cause some of you to have an “episode” like granny in her rocker… but this story is pretty crazy and worth a momentary visit, you can delete your cookies when it is done. ;)