Today my son is 17 years old. Yesterday was Fathers Day here in the states. Every year this is a very significant experience for me because of the journey. Fatherhood has been tremendously difficult. Losing my own father three years ago made it even more difficult. I don’t know anyone else that has followed my path and the loneliness and uncertainty almost destroyed me. I often describe my life as being completely alone in a crowded room…most of you are living a different life with different concerns than me and my family. I am glad for that. This journey isn’t one that I would trade, but, it certainly isn’t one I would wish on anyone else.
My son Robert was born at 24 weeks of gestation and weighed 1lb 7oz with a massive brain bleed…he wasn’t breathing and they started emergency life saving measures immediately.
That morning, my wife and I were getting ready to go to church and she didn’t feel right. We called her nurse and 5 minutes later, still dressed for church we were rushing to the hospital. A few hours later an emergency c-section was performed, truly one of the most horrific episodes of my life was watching the process.
Afterwards, none of our family were within 3 hours and I remember standing out in the hallway while waiting to see if my son survived so that I could go see him while my wife was in recovery. He survived long enough that I could get an introduction to the Neo Natal Intensive Care Unit (NICU), and a physician, who in 5 short minutes, destroyed every dream I ever had about being a father.
He told me, while my wife was in recovery, that my son would probably die shortly and that if he somehow made it that he probably wouldn’t live past a few weeks. They also told me that he would almost certainly have massive challenges if he lived. Luckily, after he left there were several nurses that provided support to me. If you have ever had the illusion that life is predictable and safe ripped from you…you have an idea of how I felt that day.
That doctor was wrong about my son dying, but, he was on point with the challenges. My son has multiple disabilities including severe autism, cerebral palsy, epilepsy and a brain shunt. At its most difficult (so far) I was exploring how to institutionalize my 9 year old son because of his violent behavior and, quite frankly, wondering why to continue living at times. My faith, my wife and my family and friends are why I am here writing to you today.
Trying to navigate the extremely difficult road of being a parent for a severely disabled child almost broke me, hell for 14 years it did destroy me. I lost all my businesses that I had built and founded…in some cases selling them for almost nothing…as I spiraled into a deep depression for years. But, I did not quit. I credit my late father for the first moment of clarity in this regard. My father was, to put it mildly, completely overwhelmed by my son’s challenges and how they were crushing me.
I called him up, crying on the front stoop of my house and said to him that I didn’t know if I could keep doing this. He then asked me the most important question I have ever heard: “Are you going to quit?!?” I immediately responded with a powerful expletive and told him that I would never quit. Dad said: “That’s right. I don’t have any idea how to help you son and I know its harder than anything I have ever seen, but, you can’t quit. You are not a quitter and you won’t quit now. I don’t know what you have to do, but, I know you can’t quit.”
I would like to say that there was an immediate and lasting change right after that discussion…but, there wasn’t. Instead, like most real changes…it took a long time and there were many ups and downs. Only within the last few months do I feel like I have returned to a place of confidence in my ability to truly work the way I did before my son was born.
My son is doing well, extremely well given his challenges and is a source of consistent joy and wonder for me and everyone he meets. My wife and I are still married despite the overwhelming odds (the percentages of divorce for marriages like ours is terrifying) and most importantly I am starting to come out of the depression.
There is a lot of, to be frank, bullshit out there about how to change your life. Please ignore it if it seems easy and quick because that is a lie. If you get anything out of this post please get this: Don’t quit.
Don’t quit and you will have a chance to survive long enough to change. You can adapt to most things if you take enough time and work at it. I did and I am still somewhat incredulous at how it has all turned out. 17 years is a long time to take to change and, in my case, it was worth it. At the end of the day, it is about your values and being able to find a place to then live based upon them.
I hope this helps someone else.