In the last year or so, we've found a few places where we are not so different. The Children's Hospital Heart Institute has provided nurses and doctors who are familiar with our medical issues, as well as a few of the families we've met there that have also walked down the transplant road.
Another HUGE place of comfort, for me, has been in the Children's Cardiomyopathy Foundation's (CCF) list serve. For the last two years, I have read, written, celebrated and cried with families all over the country/world who struggle with Eden's same (or former) heart condition. Not all of these families need or choose a heart transplant, nor do they have the same cause for the condition, but many of our stories are the same. I have never felt such a family of support like this one, especially amongst relative strangers.
Through this list serve I have befriended the Altieri family. Jackson is their three year old son (just weeks younger than Eden) who had dilated cardiomyopathy before he was transplanted in Boston at 18 months old (about a year before Eden). His mother, Nicole, has been a wonderful resource and shoulder to cry on. We are friends on Facebook, share emails and phone calls, but not until we were in the northeast this October did we get to meet in person. Eden and I had the pleasure to meet and spend the night with their family.
This year, I am thankful for an amazing group of supportive family and friends, for Eden's continued health and progress, for a healthy and very active baby in my womb... and I am especially thankful for a family just like our own, who spent 24 hours with us and helped Eden and I feel normal - syringes, anti-bacterials, medicine schedules, fears, tears, hopes, constant picture taking and all.
Thank you, Nicole... you don't even know how much.