Jodie is an Idaho Falls mom whose son Owen does occupational therapy at Connections. We asked her to share Owen’s story:
Owen is four years old. He loves sports and Hot Wheels and playing board games with his family. He is sandwiched between two sisters who love him, tease him, play with him, and protect him. He talks about preschool and t-ball, two of his most favorite activities, almost every day. In so many ways, Owen is a typical four-year old boy.
What sets Owen apart is that he has an undiagnosed condition that affects his muscles and muscle tone. This condition has left him with low tone that makes everyday tasks difficult to accomplish. Owen was slightly delayed in major milestones like walking and speaking. He has balance and stability issues when he walks and stands. He fatigues very easily. His fine motor skills require more work, energy, and focus than other children his age. His oral muscles are weak, which causes slurred words and difficulty swallowing. All of these symptoms combined leave us asking a lot of questions about Owen’s present and his future.
For the last two and half years we have worked tirelessly with specialists at Primary Children’s Hospital trying to find a diagnosis for Owen. He has undergone several procedures and tests and has more lined up in the coming months. With every test result that comes back normal, our doctors say with certain emphasis, “Continue therapy. That’s the very best thing you can do for him.” And so we do. And it makes a world of difference. Besides Owen having the physical support he needs, his therapists also provide an emotional support that we weren’t expecting to need. Starting therapy is overwhelming. Going in and out of appointments several times a week leads to a complete change in a family’s lifestyle, ours included. But our therapists are a constant source of hope, encouragement, and understanding as we navigate this bumpy road.
There’s something about Owen that many people notice right away. It’s not his wobbly walk or the drool lining his lips. It’s not the way his hands and fingers curl inwards or that he can’t stand straight. They notice his smile. They notice the joy the emanates from his entire body. His enthusiasm and happiness are undeniable from the moment they meet him. And I love that those qualities, rather than his limitations, are what define Owen. They come from within him. They do not come from a place of weakness or disability. They are who he really is. And no matter what diagnosis we may or may not get down the road, his cheerful nature and the light he shines will never change.
I often say that Owen’s condition is not a hiccup in our family life. It is not a disruption or an embarrassment or anything that makes our family less than others. We are a special needs family. We have a special needs son. But we are stronger because of Owen. We are happier because of the lessons his courage and strength teach us. Owen is a fighter and a doer and a hero to many. But he’s also a four-year old boy simply loving and living his life to the fullest.