I decided to do something a little different for this week’s blog post. Since I wrote about courage back in January, I thought I’d crowdsource what courage meant to my friends. To be fair, everyone who responded has faced CDH just like my family. Some responses came from a survivor’s perspective while others came from a non-survivors perspective.
Regardless, the responses or quotes are very telling and poignant:
Even though courage has a very personal meaning to all of us, I think Maya Angelou and Mark Twain have done an amazing job of succinctly summing up all our feelings.
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.