We do a lot of falling down in our house. Literally and metaphorically.
Brady's hypotonia, or low muscle tone, leads to lots of tumbles, slips and falls. Brady falls down more times than we can count each week.
But Brady has always been unsteady on his feet. Walking has always been hard work for our little guy. For our family...we are just grateful he is even on his feet.
Walking was another development milestone that we took for granted with our daughter Molly, we just waited for when, not if, with her.
With our son Brady, the question was not when he would walk, but if he would walk.
Brady has had low muscle tone from birth. The geneticists and doctors of all types, believe the low muscle tone is a result of the 1q44 chromosome duplication. He was so floppy in your hands when he was an infant, you could just feel that something was wrong. We waited for each physical, developmental milestone with hope and fear all jumbled up together.
Brady finally sat up, then crawled, all by 18 months, but the walking seemed like something we would only dream about seeing come true. Our initial goal, like almost every other parent, was to see our son walk on his first birthday. Every parent wants to see their little one come barreling around the corner, on their own two feet, at their first birthday party. As parents, most of us take for granted that we will get to capture this picture worthy milestone. As parents, we are thrilled if our child takes their first steps at 9 months, we are happy to see their first steps at 1 year and we get worried and anxious if they are not walking at 15 or 16 months.
We still held out hope those steps would come when they were suppose to. But ... the minute we began physical therapy our PT told us that walking at one year, was not a realistic goal. Brady was eight months old at the time and could not even hold his head up on his own. I knew that it was not a "realistic" goal, but I couldn't get my heart to understand the reality that was happening around us.
Brady's first PT really was a remarkable woman. She very matter of factly told us Brady would, however, walk by his 2nd birthday. Miss Jennifer was calm and kind with Brady, but firm and made him work hard. Even harder, when he started to master something. As Brady got older, I would wait in the lobby at Children's, while Miss Jennifer carried Brady in back to "work on walking" and, at about 23 months, Brady started shuffling out, back into the lobby and my open arms, attached to what looked like a huge belt wrapped around him. Something that looked so unusual and a bit frightening to me, was actually teaching Brady how to balance and helping him to use his muscles in ways he didn't know he could. Sure enough, just after his second birthday, Brady became a "walker."
Brady has been walking for a year and half now, but at times we used the term "walking" loosely. Brady was so unsteady on his feet those first few months, that all of us would follow behind him, right on his heels, with our arms outstretched to catch him if he fell. He fell a lot. We learned early on he could not walk around our house of hard wood floors and ceramic tile without shoes on...we learned that the hard way after some hard tumbles with only socks on. Feet pjs and slippers...the same problem. In the early walking days, Brady would stumble around wearing his footy pjs with tennis shoes...it was his signature look for quite some time.
Now, we do most of our walking around the house barefoot and he's becoming a bit of a pro. To understand what a big deal walking is in our house, you have to know what a climb it was. We always knew Brady's hypotonia is pretty severe and that he was very top heavy because holding his head up straight was a challenge for awhile, but it wasn't until we saw one of several neurologists, that we realized how truly amazing our son is.
Once we saw a neurologist, when Brady was almost 3 years old, who upon examining Brady, and feeling his weak shoulders and wobbly, elastic legs, looked up at us and said. "the fact that this little boy is walking, is truly remarkable-he should not be walking." He went on to tell us, that the only reason our son was walking, was because he was very strong. He did not have to tell us how strong Brady is. He is strong in spirit, in desire and belief. We are too. We are so grateful and proud of Brady's physical accomplishments. When we are feeling a little down about something that Brady is struggling with, our family always says-"at least he's walking", "look at him walking"," remember when we didn't know if he would walk?"....this gets us through and gives us faith that anything can be accomplished with a strength most of us don't know exists.
Brady still falls down. We have had some bad falls. Falls that have made his eyes roll back, lose consciousness and made our hearts beat out of our chest with fear....but Brady always gets back up. We have had some falls of our own. Days when I feel a little sorry for myself or snap at my husband, not for something he did, but because I do not know who else can handle my frustration. There are days, when it is hard to get back up and keep trying. But we do. My family is strong. My son is unbelievably strong. My family knows that hard work, sheer determination, and most of all, belief that you can accomplish anything...with time....sometimes lots of time, makes us get up every time we take a fall.