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One dad on the joys and struggles of life with a son who has special needs

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Dennis Ku Image by: Dennis Ku Author: Canadian Living

Family

One dad on the joys and struggles of life with a son who has special needs

By:
I used to joke about wanting to have 11 children so that I could field my own soccer team. This one-liner probably didn’t help me much on dates, and when I first met my wife, Bridget, she wasn’t even sure she wanted to have kids. But we reached a compromise to start with one and take it from there.

Quinn was born in 2011 and life was incredible. Sure, we went through the first-time parent struggles of fatigue and plenty of crying (mostly from the baby), but our beautiful little boy was the apple of everyone’s eye. “Let’s have another,” we said to each other. Bridget wanted Quinn to have a sibling, and I started to wonder if maybe— just maybe—my dreams of a soccer monopoly were beginning to come true.

The second time through parenthood is supposed to be easier. You know what to expect; you know that when your son is sleeping quietly, there’s no need to poke him to make sure he’s breathing. For the first time in my life, I felt like my expectations were on solid ground. I knew what was coming and I wasn’t scared or unsure—I was ready.

Marshall joined our family early in 2015. Like Quinn, he was born at home after an uneventful pregnancy and reassuring ultrasounds. But as soon as I saw him, alarm bells went off in my head.

Something was different about Marshall. His hands looked different, his head looked different, and he was clearly struggling to breathe. The midwives attending his birth quietly conferred before calling an ambulance. We were rushed to our local hospital, Marshall in my arms, tears running down my face and my expectations in tatters.

At first glance, we knew he needed constant oxygen; his fingers were fused; his cranial shape was different. At the hospital, the doctor gave a preliminary guess as to Marshall’s condition, which turned out to be incorrect. Only when we were transferred to the Hospital for Sick Children in downtown Toronto did a doctor confidently tell us that Marshall was born with Apert Syndrome, a condition caused by a single genetic mutation that leads to craniofacial and hand differences, as well as a host of other possible health issues.

To say we were shocked would be an understatement. It would have been one thing to have known during the pregnancy so we could prepare, but there was absolutely no indication that Marshall would be anything but healthy when he came into the world. We spent weeks at the hospital, touching our little baby as he lay in the Neonatal Intensive Care Unit, unable to breath well on his own, just struggling to survive.

The social worker assigned to us helped me put my grief into words. I was heartbroken because my son was going through so much pain and stress, but I was also grieving over the loss of my hopes for our future. We were still in the process of educating ourselves about Apert Syndrome, but we knew that the road ahead would be difficult. I have always been determined to let my children carve their own way through life and not to feel too much pressure from me, but now even my life’s mantra of “Be happy, be healthy and be a good person” was up in the air. Would my son have a healthy life?

Eventually, Marshall came home, but he was in and out of the hospital. Most of our friends and family rallied to our side. Some people didn’t know what to say or what to do. To be fair, neither did we.

Something curious happened while I cried and fretted every night. Marshall, unaware that he was different than his brother and most of his peer group, radiated love to everyone who saw him. Our neighbours loved him. A stranger at a local coffee shop asked to hold him, and I sobbed silently while she cuddled him and told him he was beautiful and perfect. And most importantly, we loved him. We love him. Despite the fact that our nights with Quinn in his first year now seemed like a restful paradise, nothing gave me more joy than to soothe Marshall back to sleep in my arms, stroking his head of curls and singing him the same songs my mom sang to me nearly forty years ago.

Marshall turned one this past February, and my expectations are back on firm ground once again. He’s standing, he’s starting to talk to us and I live for the cuddles I get from my two boys every evening after work. I see so much hope after a year of dark thoughts. I spent a year with the wrong mental approach, worrying about what might not happen for him instead of thinking about all the amazing things that are going to happen for him.

Fatherhood has taught me not to take anything for granted. Life is truly precious and my family is a blessing. Quinn reminds me of the beauty of childhood, and Marshall reminds me that some days, love is enough to carry you through.

Be happy. Be healthy. Be a good person. Happy Father’s Day.

Dennis Ku lives in Toronto with his lovely partner Bridget, and four children—Quinn, Marshall, Wallace, and Indie—two of which are human. During the day, he teaches in an elementary school, and at night, he dreams of becoming a 1980s hair metal musician. Follow his blog about Marshall at apertinentlife.wordpress.com.

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One dad on the joys and struggles of life with a son who has special needs

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