The last five months have found Owen regularly in and out of various doctor’s offices. He has physical and developmental limitations and we are working tirelessly to find the reason why and search for both short and long-term solutions. His muscle tone is low, causing balance and stability issues, speech delays, and other minor difficulties. Sweet, innocent children ask why Owen walks “crooked”, adults comment on his wobbliness and how tired he always looks, and others silently watch him from a distance as he stumbles and falls through grocery store aisles or the hallways at church.
Things that come easily and naturally to so many children - running, speaking, eating, standing straight - require a lot of hard work for Owen. He has been seen by an audiologist, an ophthalmologist, two pediatric neurologists, and has weekly sessions with both a physical therapist and speech pathologist. There are a lot of questions about what’s going on inside Owen’s little body and not a lot of answers, but we do know a few things. The diagnosis of Cerebral Palsy was mentioned a number of times with our first neurologist, pediatrician, and Owen’s therapists. After taking him to Primary Children’s Hospital in SLC for an MRI and then following up with our second neurologist there, we have been told with confidence that Owen does not have CP. We had been prepared for and almost expected the CP diagnosis and were relieved when, after those several weeks of waiting and wondering, we were told that it can be ruled out. What that leaves us with, however, are more questions and a new path of possibilities to explore.
Our next step is genetic testing, where Owen’s doctors will take blood samples of Clay, myself, and Owen and look for any anomalies that might explain his delays. The chances of finding a diagnosis are slim, but the test results could still give us a better idea of what’s in store for Owen’s development down the road. For now, we are calling what he has Global Developmental Delay, which means that everything from his speech to his fine and gross motor skills are delayed without having a clear explanation why.
What others see as weaknesses in Owen, we know are strengths. We may not yet have a diagnosis, but what we do have is everyday proof that Owen is a fighter. He is strong, he works hard, and he knows no boundaries that someone else might set for him. He has improved so much in the short time that he’s been in physical and speech therapies. In his first PT evaluation, he could not complete simple tasks like jump with both feet off the ground or walk up or down stairs without being held and guided. He now jumps off of everything he can find. He loves to walk on the treadmill and climb the rock wall with assistance from his therapists. In his first Speech evaluation, he could only say a small handful of words and mostly grunted and pointed in an effort to communicate. Now we can’t keep up with the words he is picking up on every day.
What’s hard is that many people on the outside do not and will not know of Owen’s strength. They will not know how hard he has worked and the tears he has shed as his progress continues, so frequently through pain and fatigue. So often we look at people and choose to see their faults rather than what they’ve overcome. We judge others, thinking they could try harder, do more, be something or someone different. But the truth is, we never know how far they’ve already come.
I know that we have many years, if not a lifetime, ahead of us as we work to give Owen the care that he needs. There will probably always be questions and stares and a natural curiosity from those around him. But there are also the people who know Owen and the light that he brings wherever he goes. He is happy and adorably loving and so fearlessly active. Those things come from within him. They do not come from a place of weakness or disability. They are who he really is. They are a part of his spirit and his tender, exceptionally big heart. And no matter what diagnosis we may or may not get down the road, that will never change. Owen is exactly who and how he is supposed to be. And we are so unbelievably glad that he’s ours.
