As a freelance writer, I’ve written on a variety of topics, such as marriage, stepping outside your comfort zone, laughter as a prescription for life, and fatigue. Ironically, these themes have all come together in a new chapter of my life: fatherhood.
My new life began at 4:01 a.m. Oct. 19, 2005, after my wife, Kathy, endured 15 hours of active labor and natural childbirth. The result was a beautiful boy, Simon Christopher. I watched in amazement as Simon looked up at his mom for the first time, and then turned toward me upon hearing my voice. In an instant, I had hopes and dreams for this little joy.
Like any parent with or without a disability, I also prayed that he would be a healthy little tyke. You see, I have type 3 spinal muscular atrophy (SMA).
|David and son, Simon, manage to get a little shopping done.
In the afterglow of Simon’s arrival, however, there was no room for worry. There was only time to relish the overwhelming experience of holding my 7-pound son in my weak but empowered arms. The minutes passed and I soaked them up anxiously, even after being up for 22 hours. At 4:24 a.m., Simon reacted to his new environment with a gentle but efficient sneeze. Maybe he’d simply have allergies like me.
The ensuing weeks were exciting ones with many firsts. Among them was learning when Simon was hungry, tired or needed to burp, adjusting to a round-the-clock schedule and figuring out how I could best play a role in his life.
Having had a lifelong disability, I’ve come to terms with accepting my limitations. Along the way, I’ve learned acceptance is never absolute: Some days I’m fine with not being able to do a strenuous task; other days I find it frustrating. In the last three and a half years, I’ve had to make new strides in accepting my limitations because now they affect not only me but Kathy, and now my son, on a daily basis.
I wasn’t strong enough to safely lift Simon out of his bassinet to comfort him when he cried. Fortunately, I found that he responded to having his forehead stroked or receiving a foot rub. Who wouldn’t?
At night, I couldn’t get out of bed quickly enough to soothe Simon. I tried sleeping in my tilt-back power chair in order to attend to his needs more quickly, but it proved uncomfortable.
Instead, in the midst of my frustration, I offered prayers that Kathy would have the stamina to tend to his needs overnight. Other realities, such as not being able to hold Simon upright long enough to burp him, tested my patience, too.
Focusing on the possible
Fortunately, Kathy and I anticipated these issues long before we set out to start a family. Always positive, she helped me continually focus on the things I could do.
To make diapering easier, Kathy placed Simon on our bed. I removed my footrests and placed my feet on the bed frame to get as close to him as possible. It worked well. Placing Simon’s bathing tub onto my shower bench allowed me to help Kathy bathe him, never forgetting to wash behind his ears.
Using the tilting mechanism on my power chair proved helpful in safely and comfortably holding Simon on my lap around the house. To hold him for longer periods, I used a hands-free sling carrier. Simon sat snugly in the sling that went over my shoulder and around the back of my chair handles. With it, I played the piano for him and carried him at the grocery store or doctor’s office without worrying about my arms growing weak.
Having these devices available alleviated my concern that I wouldn’t be able to carry Simon for more than a few minutes at a time. I’m thankful that, though he grows heavier each day, I can still hold him quite comfortably — provided he doesn’t make a quick reach for my joystick.
When Simon was 6 weeks old, I began giving him a bedtime bottle, which helped us bond even more. When he turned 8 months old, I’d take him to his room to help him fall asleep without a bottle. There, I’d whisper songs and prayers to him until he gave in to the idea of ending the day’s activities. Selfishly, I’d hold him a few minutes longer, taking it all in.
Since I can’t easily play with Simon on the floor, we typically move him to our bed where the games ensue: Pillow peek-a-boo, ball rolling, stuffed animal dancing, tickling, reading and singing are the order of the day. I can’t describe the complete joy I feel when hearing my son’s laughter.
Not all of our together time is high energy, however. I recall once when Simon and I sat outside on a spring day. I tilted my chair back, and we watched the birds and trees come alive in the wind. I witnessed the wonder in his eyes.
Last Christmas, when Simon was just 2 months old, there was wonder in my eyes, too. His uncle gave us a custom-made sidecar that attaches to my wheelchair (see cover). The sidecar, which he designed and built, came equipped with leather seats, a seat belt harness and a wealth of fun opportunities.
All three of us go for walks in our neighborhood or at the park, where passersby comment that it’s the coolest thing they’ve ever seen. It’s probably the most perfect gift I could ever imagine. Judging by Simon’s smiles as we cruise down a trail, staring up at the trees and blue skies, I’m certain he agrees.
Looking back, looking ahead
I remember Simon’s birth vividly, his first smile five weeks later and his first makeshift words, “Da da da.” I look back at our sometimes overwhelming first year of being parents, and I wouldn’t trade it for the world. Simon is a happy, good-natured, loving little boy whose personality grows more each day.
|Simon von Hatten|
I also look back at how I’ve placed my worries concerning his health into bigger hands. Today his legs and arms appear strong and full of life. His smiles and laughter are full of soul.
Tomorrow never knows, but no matter what his health may bring, Kathy and I hope to give him a great perspective on life, the tools to laugh in the most difficult of times, and the wisdom to accept those who are different.
Most of all I pray that one day he’ll be fortunate enough to marry a woman as beautiful, strong, patient, supportive and loving as his mom, who has made my being a father a positive, life-changing experience.
I’ve learned that while I can’t do as much as I’d like for Simon, I can still love him completely. It doesn’t take arms and legs, just a lot of heart.
David Von Hatten is a freelance writer living in Austin, Texas.