Down syndrome from a father's perspective.

Down syndrome dad turning forty

I have always enjoyed the “year in review” type shows that are popular this time of year. Those that reflect on the most popular songs of the year, or top sports highlights, important news headlines, etc. Just this morning I saw a blog post from a mom that highlighted the past twelve months in the life of her disabled son; I thought that was a great idea for a post. That is when it hit me that this year was a little different for me, it wasn’t just another year in the life a father to a son with Down syndrome. This year, on January 2, I am turning the big 4_0.

What has my life become?

I was never one of those people who had his entire life planned out. I met the love of my life when I was sixteen. Actually, I met her in seventh grade but it wasn’t until the 10th grade that I started to see how amazing she was. Other than knowing that I wanted to spend the rest of my life with Leigh Ann I did not have much more planned out.

I thought I was going to be in full-time Christian ministry as a pastor or a missionary but after two years of Bible school I changed directions and headed into business. After getting my bachelor’s degree in business I did set a goal for myself, to either have my own business by the time I was thirty or have my master’s degree in business. I didn’t quite hit the goal on schedule but I did have partial ownership in a family business and earned my MBA by the time I was 34.

As far as having kids goes, I have always loved little babies and knew I would have kids but I never had a plan or a preference for the number or gender of my children or anything like that. Sometimes I wonder if that is part of the reason I have felt somewhat un-phased by having a son born with Down syndrome. Sure, I would not have chosen to have a child born with a disability and I sure never thought I would but because I didn’t have some pre-determined picture of my ideal family this just seemed normal to me. Before Treyton was born I was the only male in the house. People would ask me if I wanted a boy but the truth is I never thought about it. I had three girls and life was good. Now I have three girls and one boy and life is good.

Important life events

When I think of important life events I am not I am not thinking just about the “happy highlights” but any event or series of circumstances that have helped to mold me into the person I have become.

As the youngest of three kids I am sure there are birth-order factors involved in my personal development but those are not really unique to me. I was a very sensitive kid that never wanted to hurt a flea, but, I was a kid and made dumb choices at times that got me into trouble and had various negative consequences. If you are familiar with Love and Logic Parenting you will recognize that those poor choices lead to opportunities for growth.

Opportunities for growth

My dad was a very hard-working man and expected his kids to do the same. I marked my summer vacations from school by the different housing developments I worked in as I poured cement with my dad. I could write a very long book with all of the lessons learned on the job site.

As a student at a Christian school I had the opportunity to go on two different mission trips to the Dominican Republic. On these trips we did some manual labor as we helped some missionaries with basic construction but also had the opportunity to see a completely foreign type of life, third-world life.

The real growth-opportunity came when I went back to the Dominican Republic by myself between my sophomore and junior years in high school. My mom has told me she can’t believe she allowed me to go and probably would not make that same choice again; I think it was the right decision for me.

Tough realities

I have had a good life and have been extremely blessed. Yet, there were things that happened that were really scary and tough to deal with at times. For example, before I was old enough for school I would go to a baby-sitter when my mom worked. I remember the car rides to and from the sitter were usually fun as my mom and I would sing songs. One day on the way home my mom noticed smoke coming from under the hood of the car. We stopped along the side of the road and my mom got me out of the car and across the street from the car while she went to find a phone to call the fire department. I remember hearing the tires explode from the heat as the car went up in flames before my eyes. What a crazy thing to happen!

What was really crazy was having our house hit by lighting two-times in three days when I was a kids. This crazy bad luck seemed to stay with me and resurfaced a few years ago when I was playing on the trampoline with my youngest daughter. Lindyn was three at the time and being on the tramp was nothing new for me. I had one growing up as well as the entire time we had kids old enough to jump. When it was my turn to do a trick on this crazy day I began to bounce and then collapsed. I had a bi-lateral patellar rupture which means that I snapped both patellar tendons which caused both of my kneecaps to slide up my thighs and need to be reattached. I was like a freak-show in the hospital, no one had heard of such a thing.

There is one experience that really stands out to me as I turn forty, probably because Dale would also be turning forty this month. May 9, 1981 was a sunny Saturday. On that day I rode my bike the two miles from our house to the quick stop store in Jamestown to get some baseball cards, my friend and neighbor Ken was with me. On the way home my friend Dale joined us for a bit as we rode past his house. His mom called for him to come back to his house so he started to turn around when the motorcycle hit him.

It all happened so fast. Ken and I were both on the ground. Ken was hit by some debris but I am not sure why I was on the ground. I help him gather his baseball cards and when I noticed I had wet my pants in fear. Ken wanted to go look but I wouldn’t. I could see (and can still see) the blood in the tall grass of the ditch where Dale was. We got on our bikes and rode the remaining 1.5 miles home.

If I close my eyes I can still see Dale lying in the casket at the funeral home. He looked different but also the same. I had heard that something happened to his wrist so I remember focusing on his hands. That is when his mom approached me. I can’t fathom the pain she was feeling at that moment when she began asking me why I had to ride by the house that day. She got louder as she asked me that same question over and over. She was weeping, I was crying.

Why did I ride past his house that day?

Some perspective

I don’t know. That seems to be my answer for a lot of things that have taken place in my life. If I couldn’t live with “I don’t know” I think I would go crazy. I have learned that there are a lot of things that happen that we will never understand why. As a result, we have to come up with our own reason. Why was my son born with Down syndrome? Talk about random. Kids with Down syndrome are born to parents of all ages, ethnicities, and economic classes. I don’t know.

What I do know is that I have family and friends that love me. I am blessed with a beautiful wife and four amazing kids that make sure life is never boring. Down syndrome is part of my life now and is helping to continue to make me into the person that I am supposed to be.

Rob Arnold has been married to his high school sweetheart for almost 19 years. Together they have three daughters and one son. He earned his bachelor's degree in General Business from Grand Valley State University as well as an MBA in Strategic Management from Davenport University. He enjoys reading, hunting, scuba diving, and spending time with his family.
  1. Little Bird's Dad

    Thanks for sharing these thoughts.

    My youngest was born last year, right before I turned 41. I’ve spent a lot of time mulling the same type of things you talk about here. I particularly liked your thought about not having any expectations of how your children might be – I was like that, too.

    We didn’t know whether Little Bird was a boy or a girl, and did not know he had DS until birth…for me, at least, I think this is the reason that I was able to immediately accept and love Little Bird just as he was…I had no pre-conceived notion of how he should be.

    Anyway, forgive my babbling. Love your blog, and will return often to read more!!


    • Rob Arnold

      Little Bird’s Dad,

      I appreciate you comments and should point out that my wife and I have been to your blog and enjoy it. We are both baseball fans but she tends to be a little more enthusiastic than me about it and liked your comments about the start of spring training and such. I like how you let your personality come through, I think it is extremely important that we show the world that real people have kids with Down syndrome and that we continue to be real people after the fact. The end result is that we raise kids that have Down syndrome but more importantly become real people just like us.

      Rock on!