(Photo: Katrina Ruthven)
I remember the visit I had from the midwife the day after we brought our son Alexis home from the hospital as clearly as anything. He was 4 days old and our first child. We had known for most of the pregnancy that he had a 50 percent chance of having Duchenne muscular dystrophy (DMD), but we decided to continue without invasive genetic testing, knowing how desperately we wanted our baby boy regardless. He was born prematurely at 35 weeks, a tiny 4 pounds, 9 ounces, but perfect nonetheless.
My husband had just gone to the bank when the midwife arrived on her postnatal rounds. She went through her checks, and then we talked as he slept in my arms, occasionally interrupting with those lovely, soft, contented noises babies make. I’m sure she was just trying to be kind, but I had a defining moment when she mentioned genetic testing and the possibility of him having DMD, and said, “It doesn’t matter if he isn’t perfect.”
I looked down at my beautiful son and replied with exactly what I felt: “He is perfect.”
I believe perfection is in the eye of the beholder. Perfection to me doesn’t mean all of his genetic coding has to be present and correct in the right order. Nor is it about looks, or any of the other superficial stuff that doesn’t actually make a difference. To me, perfection relates to the amount of happiness something brings. Those things that bring us true happiness are the ones that are the most perfect. When Alexis was born, he showed me what true happiness is, more intense that I ever thought possible.
Even though the later genetic tests showed he has DMD, to me, he’s still my perfect boy. Our happiness may look different than how others experience it, but it’s very much there. At times it’s bittersweet, as we smile through the many tears we experience on this journey. But in other ways I wonder if we’re actually more happy, since we’re all too aware of the importance of making happy family memories to last us a lifetime.
For each and every day we have with Alexis, we continue to experience true happiness, as Alexis continues to be our perfect son.