As a parent, it is exciting to watch your child develop from the moment they are born. We look forward to when they can hold their own head up. When they can rollover. When they can sit up by themselves. When they go from crawling to cruising to walking. These are commonly referred to as milestones and every child hits these milestones at their own pace. My oldest daughter was ahead of the curve and hit her milestones early. Rachel hit her milestones at an average rate. Then came Levi. Having gone through this with 2 other children, we had created expectations on when Levi would hit his milestones. So as time started to pass and we didn’t see the development that we expected, naturally we began to be concerned. At about 6 months, the pediatrician told us not to worry. All kids develop at their own pace and that Levi was just a late bloomer. At 8 months, he still was unable to fully hold his head up, roll over or sit up. At the next doctor visit the pediatrician described his muscle tone as “floppy”. I believe the technical term is hypotonia. We were sent to see a neurologist. After an MRI, it was confirmed that Levi had a neurological disorder.
Over the course of the next year, my wife and I spent a lot of time trying to determine the cause of Levi’s issue. What we knew was that the myelin in his brain wasn’t filling in correctly. We didn’t know why. We spent hours upon hours researching his issue trying to come up with a diagnosis as if we had spent years in medical school. By the way, the internet can be a very scary place when researching medical issues. After numerous test and multiple MRI’s, the doctors couldn’t come up with a cause. We have come to accept this and in the end it doesn’t really change the way Levi would be treated anyway.
During this same period, I spent a lot of time in a state of either anger or sadness about Levi’s condition. Everywhere I would go I would compare him to other children his age and wondered if Levi would ever be a “normal” child. This was a natural feeling, right? It was then when I turned my focus from the cause of Levi’s issue to how to cope. In my internet travels, I came across a lot of great information and blogs from parents who have already experienced the same challenges I was now facing. One blog in particular really changed my outlook on things when she asked one simple question. What is normal? I didn’t have to read any further for things to click. Who defines what normal is? I took a moment to reflect on this. Levi is a very happy child with a great personality. He loves to laugh and be tickled. He loves to play, especially outside. He has favorite foods and favorite toys. He likes to harass his sisters. He likes to knock things down, especially if it was built by his sisters. He loves to swim. In fact he swims better than both of his sisters. I don’t know about you, but that all sounds pretty “normal” to me.That moment was a life altering experience for me. Sure Levi has some physical challenges but he is a very “normal” little boy. We know that eventually he will get to where he is meant to be. Our job as parents is to try to make that journey easier. The milestones will come in time. The important thing is to not focus on what he can or can’t do but just enjoy the precious moments that enrich our life. In the end they just want to be loved and treated “normal”. Lesson learned.