I was all set to use the lyrics from the Talking Heads song “Once in Lifetime” as a jumping off point for my blog this week about REFLECTION:
And you may find yourself living in a shotgun shack
And you may find yourself in another part of the world
And you may find yourself behind the wheel of a large automobile
And you may find yourself in a beautiful house, with a beautiful wife
And you may ask yourself-Well…How did I get here?
I was then planning to reflect on my life. But I started thinking this morning about something much more immediate. I started reflecting on my life in the past 4+ years and how we had two children with birth defects that required them to fight for their lives while in the NICU.
I started reflecting on all the families affected by CDH every year (between 800 and 2,000) in the US.
I reflected on how that means that up to 1,000 children per year lose their battle with CDH.
I then started reflecting on all those fighting for their lives right now. Some of these babies are very close to home such as one family with a CDH child currently in the NICU for 80+ days and currently with no timetable for going home. Or another family who lives relatively close to me and unfortunately lost their child to this relatively unknown birth defect. Or even (as I like to say) my son’s CDH sister from another mother (as they were born on the same day and both had their CDH repairs at 3 days old). Unfortunately, she is back in the hospital with not only a hiatal hernia but a rehernation of the diaphragm.
I reflected on why my family was blessed with two CDH miracles. And as if that wasn’t enough, they have relatively few (if any) of the long term complications which often result from having this birth defect.
This then led me down the path of what is my purpose? Or even the hopefully easier question of what is my passion? I enjoy my work professionally as a marketer. But I can’t help but wonder if my “real” calling is more philanthropic in nature. I feel like my family has been gifted with two miracles, and it would be wrong of me not to “give back” to the CDH community.
I have spent the last 2+ years trying to do whatever I can to give back…from volunteering for CDH charities to organizing get togethers to starting my own support organization.
I wonder what I’ll reflect upon in another 10 years. How about you? What do you reflect upon? What is your passion?
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Neil Rubenstein has been married since 2003 to his wife, Amy. His CDH survivor (Aidan) was born in June 2010 after being diagnosed at 37 weeks. Aidan had surgery to repair his hernia when he was 4 days old. His surgeon discovered at that time that Aidan had no diaphragm at all, all his organs were in his chest (except for his liver), his heart had been pushed to the left side by his stomach. Even with all this, Aidan did not need ECMO and was only in the NICU for 29 days. Aidan had a follow-up procedure at 13 months old to close up an abdominal hernia that his surgeon created to give his organs room to grow once she moved them all back to their proper location in his abdomen.
While Neil and (his wife) Amy were still dating, they started Creative Celebrations, a children party planning and entertainment company. Neil has over 15 years experience in Integrated Marketing Communications and is currently looking for his next permanent role in the Chicago area.
Amy and Neil recently had their second child in September 2013. After spending 2 months in the NICU, Brody came home on an NG tube. Brody will need the same follow-up surgery as his big brother when he is 1 year old. Neil is the former CHERUBS Illinois (and Wisconsin) Rep and Co-Chair of the Parent Advisory Board. Neil recently created Help4CDH Families and is working towards nonprofit status to be able to continue to provide a forum for people affected by CDH to meet and support each other as well as to be able to provide financial support to CDH families in their time of need.
I read your article with great interest.I was gifted with Ira 42 years ago. He is, the term then was “mentally retarded” and developmentally delayed. He was a very sweet child until the hormones kicked in and then he began to experience sporadic violent outbursts. The doctors put him on psychotropic drugs.
Every couple of years his meds needed to be readjusted and that included being hospitalized. He has been in and out of the hospital since the end of April of this year. One hospitalization included a broken nose and surgery.
I finally came to the realization that I needed to become active in NAMI, National Alliance on Mental Illness. Mental illness is so totally misunderstood. It has taken me all this time to understand this misunderstood illness and take my place in the campaign to bring it “out of the closet.”
Thank you for your article. Much support and understanding on your journey.
Thank you for reading and commenting. I really do appreciate it. Much support and understanding being sent back you way too.