*Neil Rubenstein’s son Aidan was born with Congenital Diaphragmatic Hernia, or CDH, a birth defect in which children have only 50% chance of survival. Aidan, now a healthy toddler, has inspired his father to raise money for CHERUBS, the first and largest organization devoted to raising awareness of CDH.
Today, we’re re-posting Neil’s dad-story so we might help him promote the 1st Annual CHERUBS Kids Carnival in Highland Park, IL, on Sunday, October 14, from 11am to 2pm.
There will be games, rides and other attractions — and all money raised will go directly to CHERUBS.
DATE Sunday, October 14, 2012
TIME 11am to 2pm CDT
PLACE The Recreation Center of Highland Park, 1207 Park Ave W, 60035-2204 Highland Park, IL
FREE and open to the public
Full details can be found here: CHERUBS
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HOMETOWN / WHERE DO YOU LIVE NOW? Morton Grove, IL / Wheeling, IL
ON THE WEB
NUMBER OF CHILDREN One
DAY JOB I am currently looking for a permanent job. My background is in integrated marketing with an emphasis in direct marketing.
In my “spare” time I also help my wife run her children’s entertainment company, and I volunteer for CHERUBS (on a number of different levels). CHERUBS is the first and largest organization devoted to raising awareness of congenital diaphragmatic hernia, otherwise known as CDH. They provide support to families affected by CDH, and promote research to find the cause and improve treatment for this birth defect.
*Editor’s Note* We ‘met’ Neil last year on Twitter and our meeting prompted us to reach out to another parent we knew, whose son had also survived CDH. You can read Jane Jackson’s story here.
RELATIONSHIP STATUS Married since October 2003
FAVORITE CHILDREN’S BOOK My son loves all books at this point. He loves the “That’s Not My….” books by Fiona Watt, and has wanted us to read a lot of Clifford books to him lately. But I think a robot book would trump a big, red dog any day. As far as book that has been handed down, I think the cliché but ever relevant “Oh, The Places You’ll Go” by Dr. Seuss would fit that description. Given what my son has already endured, we think he is destined for greatness.
HOW DO YOU COMBINE WORK AND FAMILY? How have you, or you and your partner, arranged your life/schedule to provide the daily care for your kid(s)?
My wife and I share in the parenting duties pretty equally…although when I’m working full-time, other than helping in the morning (during the week) there is only so much I can do. On the weekend, it is a pretty much a 50/50 split. I do find that now that we have a family…I have an even bigger incentive to get home at a reasonable hour to see them, have dinner as a family, and spend some quality time with my son. From a daycare standpoint, my wife takes care of our son three days a week (unless I am off of work for some reason) and my mother watches Aidan two days.
When Aidan finally came home from the hospital (after 29 days), we shared the care responsibilities pretty evenly (feedings every 2 hours, diaper changing, doctor follow-ups, etc.)
WHAT IS YOUR WORST PARENTING MOMENT?
Finding out at 37 weeks pregnant that our son would be born with congenital diaphragmatic hernia and had only a 50% chance of survival. This would be closely followed by the first few weeks our son was in intensive care…not knowing if he was going to survive or not.
HOW HAS PARENTING CHANGED YOU AS AN INDIVIDUAL?
Now that I am a parent…my entire life revolves around my son and family. I was always an athlete and tried to be as healthy as possible, but now (especially given that my son’s lungs were not fully developed when born) I am hyper sensitive to 2nd hand smoke and anyone smoking anywhere near my son.
I can remember before my son was born, seeing the huge mess a baby boy made in a restaurant (by throwing food) and wondering why his family allowed it to happen. Now we are that family, and my son is the one making the giant mess (sometimes). Needless to say, I realize I was too harsh on those families and passed judgment based on my naiveté.
HOW HAS PARENTING IMPACTED YOUR RELATIONSHIP?
I think our relationship has gotten much stronger. Nothing brings you together like adversity. Being told our son would only have at most a 50% chance of survival brought my wife and me closer together. After my son came home, I’d still say becoming a parent has strengthened our relationship. Sometimes couples fall into ruts and it’s too easy to fight about little, usually silly things. However, with a child around you have to watch your tone of voice and how loud you speak all the time (especially now at two years old, when they repeat everything).
I think this causes you to be more thoughtful and less quick to anger…this in turn forces you to talk things through in a rationale way.
WHAT ARE YOUR STRENGTHS AS A PARENT AND WHAT ARE YOUR WEAKNESSES?
I think all first time parents have weaknesses based on the fact they are figuring things out as they go. No book can prepare you for what to expect especially when you have a child that born with a life-threatening birth defect. My strengths are my willingness to acknowledge that I don’t know all there is about raising a child, that I love getting down on the floor to play with my son, and that I put my family before myself without any hesitation what so ever.
WHAT ARE YOUR SPOUSE’S STRENGTHS AND WEAKNESSES?
My wife’s strengths are that she is the most loving, caring individual I’ve ever met. She is gifted with children — and not just ours — but all children. I’ve seen children try to break out of their strollers when my wife says hello to them, as if she was a magnet pulling them to her. There are no other words to describe it other than gifted.
It’s funny that something I see as a strength in myself, I see as a weakness in my wife. I sometimes think that she puts others before herself too frequently (at the expense of taking care of herself).
WHO ELSE PROVIDES CHILDCARE FOR YOUR CHILDREN?
My mother takes care of Aidan two days a week, so that my wife can work a couple days.
DO ANY OF YOUR CHILDREN HAVE SPECIAL NEEDS? AND IF SO, HOW DOES THIS AFFECT YOUR PARENTING?
Aidan doesn’t have any special needs per se. But we will forever be overly sensitive any time he has a cold that settles in his lungs, due to his lungs being under-developed at birth. Plus anytime he has the stomach flu or almost any other illness (for that matter), we will always worry that his diaphragm reherniated, requiring additional emergency surgery.
I see a lot of ER visits in our future.
WHAT IS YOUR BEST PARENTING MOMENT?
The first one would be when our son was born and hearing him actually cry.
Many CDH babies don’t have enough lung capacity to cry when born, so we hoped that since Aidan cried (a little) it meant his lungs were in relatively good shape.
This is followed by every milestone our son hits – sitting up, crawling, walking, talking. Everything is so meaningful to us given the fact that we didn’t know if he would survive, and if he did, what other complications he may have as a result of the CDH birth defect.