When were you at your most naked?

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Well, when were you? If you know me personally, you know I am pretty much an open book. Between social media and the blog posts that I write, there’s not much of my life that I leave to the imagination.

However, there are some things that I tend to gloss over. But in the spirit of naked, I can’t help but think back to one of the toughest times of my life. Things start out pretty familiar in that the time period is when my wife was around 35 weeks pregnant with our first son. Suddenly what we thought was a perfect pregnancy started to go south quickly. My wife’s amniotic fluid levels were elevated (all of a sudden) which caused her OB to be mildly concerned. As a result, we scheduled a level 2 ultrasound.
Right around this time, I got wind that things were not going well with a client I was working on and that my job might be jeopardy. With a baby on the way, my stress level started to increase.

At 37 weeks, we got the CDH diagnosis and found out that our son would only have a 50% chance of survival (at most). Literally within days of getting the diagnosis, I was told that I would be laid off in 2 more weeks. I still remember having less than a week left of work and heading to a networking function, but I had a feeling that something wasn’t right. I stopped at a Clinic only to have my suspicions confirmed…I had shingles. The stress of finding out about our son and losing my job was getting to me.

The day finally came and my job ended. I filed for unemployment for what felt like the hundredth time in my career. But I was praying that I would find something soon. My son was scheduled to be delivered in about 1 week, and I had incredibly expensive COBRA and virtually no income.

Amazingly I was able to land a 3 month freelance job. Then my son was born and seemed to be doing relatively well (in the scheme of things). But after taking a couple days off to be with my wife and son, my boss called me into her office to tell me that the money funding my role was being reallocated. In other words, I was losing my job again after less than a month. Now I had no job, virtually no income, and a child in the NICU with a severe, life-threatening birth defect.

If bad things happen in 3’s…I had:
1. Lost my job 2x. I think that counts as 2

3. Developed shingles from all the stress
4. My first born child was in the NICU fighting for his life with a life-threatening birth defect that I had never even heard of 5 weeks prior.
I guess 3 bad things wasn’t enough? I needed one more “for good luck” as my now almost 4 year old likes to say.

So fast forward to today, we’re now a family of four. My 2nd son has the same birth defect as my first. But most poignantly, we’re still feeling the effects of me being on unemployment at the worst possible time imaginable…while having a child in the hospital for an extended period of time. We’re a family, and we’ve been able to make the most of it. But I can’t help but think back to that time 4 years ago and wonder if I hadn’t lost my job if things would have been any different.

Oh and I finally landed my first permanent job in 4 years. Maybe things are looking up.



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.

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