We have been very open and public about our journey through our pregnancy with our son Kyle (Oct 24 - Nov 8, 2011). His life has not only affected us as a family, but our extended family, friends, acquaintances, doctors, hospital staff, and many people who I have never even met.
Not only did it affect these people, but his life created a lot of conversation right from the very beginning. Some people didn't understand why I didn't abort immediately after finding out he was affected. Others were incredibly hopeful for the medical treatment of a liver transplant that was available this time, that wasn't a possibility eight years ago when we went through this before. After his death, many have struggled with the "How could this happen," either from a medical or theological perspective, or both. Awareness about urea cycle disorders and awareness about organ donation have occurred. A new study on hepatocyte transplant (injection of healthy liver cells) will be taking place for children with urea cycle disorders in Toronto because of the behind the scenes research that the metabolic genetics department did because of information I had them look into while looking into treatment options for us.
We have been overwhelmed by the generosity of others. From the many people who looked into the possibility of being a donor, those who spent hours in prayer, those who helped financially, those who brought us flowers and meals and gift cards for meals both during our time at Sick Kids as well as in the weeks we've been home. For those who have visited and listened and laughed and cried with us. For the heartfelt letters, that I will go back to read. One family even provided us tickets to go see Mary Poppins the musical in Toronto as a way to reconnect as a family, which is something I would never have thought of, but was highly valued and appreciated by us. People often ask what they can do for us, and I never have an answer. Sometimes you don't even realize what it is you need. A reconnection experience to adjust into our "new normal" was one of those things.
I'm not very good at accepting things from people, but I was told by many (my husband, social worker, pastor, etc.) that if someone offers something, I need to say yes, because 1) I need to and deserve to (I still have issues with the "deserve to". I don't think I do, but I digress...) and 2) Because individually and as a community, people want and have the need or desire to help, and they can't help with allowing us to still have our son, so they help in whatever way they feel they can. So when offered, I say yes, and we have been blessed and overcome by the generosity of others.
I have noticed a few blog posts about Kyle's life in the last few weeks. I thought I would share them here.
I was also interviewed during my pregnancy by Camilla Cornell, who wrote an article entitled "Gene Genie" in the 2011/2012 Winter Edition of the Pregnancy Special of Today's Parent Magazine. I can't find an online link at this point, but I'll put it in if I find one. Look for this magazine at your doctors office. They are distributed free of charge.
It is now 7 weeks since I gave birth to Kyle, and 5 since he died. I went back to work after our son Colin 6 weeks after giving birth and his death (he lived for 3 days) and it was much too soon on an emotional level. I will return to work this time at the beginning of February, 15 weeks after giving birth, 13 weeks after his death. It's amazing how much time is needed to process death. I'm not sure that it ever fully gets processed.