What’s It’s Like to Father a Child with Down Syndrome: The Perfect Family

What’s It’s Like to Father a Child with Down Syndrome: The Perfect Family

“He has what?” Yep, that was just how the great adventure for this dad began. Here I was at 31 years old standing in a delivery room with my beautiful wife of eight years about to have our second child. The first, three years earlier, was a wonderful little girl (Hannah). Now here we were again about to have a little baby boy. Wow! The “Perfect Family.”

But something was much different this time. Let me back up just a minute so you know how we got to this point. It had started hours earlier, while I was on patrol as a police officer. My wife had called me and said something wasn’t right with the baby. He had stopped moving and she was worried. At first we both thought we would wait until she could get an appointment to get checked out. However, something in my gut told me to have her go in now. It may have been the fact that a coworker had just been through a very traumatic stillbirth with his wife. Not sure if that was it or it was just instinct. So with that, I left work and rushed my wife to the emergency room.

We were not there long before she was taken into an exam room. I knew this was serious as I was listening to the numerous doctors and nurses who were checking on her. Within minutes, we were gowned-up and in the Operating room preparing for a C-section.

And that’s when the sledge hammer of life caught me square on top of the head and sent this dad and my “perfect family” slumping to the floor.

I watched what appeared to be a very blue lifeless child lay on a cold steel table as doctors worked on him to get him breathing. This in itself was as traumatic as any parent can imagine. Then within minutes, a nurse walked over to me and said the words I will never forget: “It looks like he has DOWN SYNDROME,” to which I replied, “He has WHAT?” She repeated it, “DOWN SYNDROME,” and with that she turned and walked away.

I can honestly say I don’t recall what occurred over the next few moments. My head was spinning with those two words going in circles. I was brought back to reality when this little boy, Alex, began breathing and moving around. I stared at him for some time as he was shown to my wife and me. I looked intently at him to see if I could comprehend what the nurse said he had, but nothing really registered. The doctors removed Alex from the room and finished taking care of my wife. Off to the recovery room we went.

During this time my thoughts were racing again a question running circles in my head: What is Down syndrome?

Well, as a 31 year-old father, I had no idea. I began to think back to my early life and visualize any contact I may have had with some child with this. The only thing I could really recall was a television show, “Life Goes On,” with a boy named Corky.

Being inquisitive, I needed to know more. I checked on my wife and Alex to make sure they were both comfortable. I then told my wife I needed to leave for a bit.

I drove around for a bit in a daze. I was scared, shocked and in disbelief over what was occurring. My thoughts were in dozens of different places at one time. Did I do something wrong? Did I cause this? What is this? Etc. etc.! Well, being a police officer and wanting answers, I decided to go find them. I drove straight to Walden books. Inside I was met by a young sales girl. She politely asked if I needed assistance. “I’m looking for books about Down syndrome,” I replied. She thought for a moment and then took me over to a section on disabilities. Was there a particular book I was interested in, she asked. I said, “All of them.” And with that I bought every one they had.

Back to the hospital I went. I strolled into my wife’s room with my bags. I promptly pulled out all the books and handed them to her with the words, “We have some reading to do.” And with that, my head cleared. I decided that, whatever this Down syndrome was, it wasn’t going to change this perfect family. As long as little Alex was breathing and alive, that was all that mattered.

If only I could have known at the time the joy, laughter and tears Alex would bring me, those two words, Down syndrome, that nurse said to me would not have been so scary.

The bottom line was that I was now the father of two wonderful children. Life was good. Now, has life with Alex been easy? Not by any stretch of the imagination. But in reality he wasn’t much different than any other kid. Sure, he didn’t talk well, and sure he acted a little different. But overall, he was a pretty normal kid in my eyes. To be honest, the hardest part of raising Alex has been dealing with the people who learn he has Down syndrome.

If I had a dollar for every person who said to me over the years, “I am so sorry.” “Why are you sorry?” I would say. “Sorry because I have a wonderful little boy? Sorry because he is different from your children? Don’t be sorry, be happy. He is perfect.”

My biggest worry in being a father to Alex has been hoping that others accept and treat him well. Fifteen years later, I no longer worry about this. Alex makes fast friends where ever he goes. Funny thing is, I’ve found myself telling his older sister at times, “You need to act more like Alex.”

Sure, being a father to a child with a disability can be different.

Many of the dreams dads have of watching their son become a professional ball player or becoming a CEO of a big company are just not going to happen for me. Just watching him develop and go through life is rewarding in itself. I’m sure not too many dads can tell some of the stories I can about their kids:

• Like the time I found him standing under the porch dressed as the Hulk.
• Or the time he put on my police uniform (minus the gun) and decided he was headed out on patrol.
• And I am sure none of them have a kid who thinks he can walk to Florida to go to Disney World.

Sometimes he makes me laugh, other times he makes me cry. On my worst days returning home from work, I’m greeted by a beaming young man who hugs me and asks if I had a good day. He then proceeds to ask me what’s for dinner and if I made money for Disney. All dads should be so lucky.

I’ve often wondered whether, if I could change Alex into a normal everyday kid, I’d do it. Every time, the answer is a resounding NO! This little boy who came into the world in such a traumatic fashion with the utterance of four confusing words, “HE HAS DOWN SYNDROME,” is the son every father would dream of having. Perfect in every way. I will be forever proud to be his dad.

Did I mention he has a little brother? Yep that’s correct, his 11 year-old brother, Ben. Oh, and did I mention this little brother also has Down syndrome? No typo there, “HE HAS DOWN SYNDROME TOO!” I guess I am the luckiest dad in the world. I’ll save Ben’s story for another time. I need to go be a dad to the Perfect Family.

More Articles about Special Needs Parenting:

• What “Special Needs” Means to a Parent
• The Spoon Theory for Special Needs Parents
• Help for PTSD in Special Needs Parents
• Parents of Special Needs Children: Cultivate Your Joy
• 10 Things That Special Needs Parents Never Take For Granted