Trisomy Awareness

March is trisomy awareness month. And the eighteen is especially important to my family as we promote awareness of trisomy18 - the second most common abnormality after trisomy 21, AKA Downs Syndrome- both are birth defects we have little ability to prevent. And still have much to learn. This day is significant to our family as this abnormality -T18- is what eventually took the life of our sweet girl, Rowan.

We knew nothing much of such disorders before she was born - only what was covered in college biology and psych courses - and that was little. Rowan's birth opened us up to so much about the world of health, medicine, ethics, and disabilities. But mostly she focused us. We soon knew our priorities. She gave us focus. Opened our eyes to a world that requires empathy and compassion. Without her to greet us each evening - it's a struggle to remember these things. Truly it is a matter of exposure.

Through the years we found a strong network of families to support us - a listserv that has now gone dark, and the Support Organization For Trisomy 18 14 and related disorders. Also now Facebook certainly offers a meeting place for all those who need advise or just want to share- these resources are invaluable to our families. And deserve our support. Please consider doing so, if you have something to share. I guarantee it will be returned to 100 fold. They certainly have given us an outlet to honor her memory.

As for our sweet Rowan, she is irreplaceable in our lives, and in our hearts. Her sister yearns for and older sister whom she saw had no disabilities. We miss our family of four, who quickly filled the family car with gear for every outing. The rhythm of our days is uncomfortably normal - lacking meds, therapies and treatments. All things we should be happy to do without - but miss because of what they meant to Rowan. Now the daily hum drum of mostly annoys us. Those things never bothered us before when we had much more pressing issues to be concerned with. And that is annoying!

Tonight I'm wondering if awareness of trisomy is spreading, and if so is the quality of our children's' lives improving? I don't know the answer to this, as we are slowly moving out of such circles and moving forward with of our life. But I certainly hope and pray for such. I'm not sure I would change any of the decisions we made for Rowan - but I pray that more information for families makes for clearer decisions.


We miss you Rowan Margaret.  And love you so!