I worry. I worry a lot. I worry more than most. I worry about my son Brady.
As parents, we all worry about our children. It's part of the job description. As parents of a child with special needs, we worry more than most can even imagine. I worry about my son's future. I worry that, at almost four years old, he has never had a play date or been invited to a friend's birthday party.
I take a very deep breath, every time he takes a bite into a hamburger or piece of pizza, because I worry he will choke. I catch my breath each time he starts running or climbs up his play rock wall. I stand a little too long waving good bye as his special needs bus pulls away, because I worry if he will be Ok during those twenty-five minutes he is alone on the bus, exercising his independence.
I worry when I am with him, chasing him around the house, making sure he doesn't fall and hurt himself. I worry when I am away from him, hoping and praying that he can communicate to those he's with what he needs and wants. I keep waiting for the worry to go away.
I am worrier by nature. Just ask my husband. I have a tendency to worry about things that are not worth the effort I put into worrying. I over analyze things that are pretty simple. I focus on events and situations that are so far into the future, that sometimes I forget or lose track of the moments that are happening right now.
When my daughter Molly was born, I was filled with all the worry and fear that most new mothers experience. I was scared to hold her, for fear I would break her. I was afraid to bathe her, for fear she would slip out of my hands. I was afraid to let her sleep too long, for fear something was wrong. But the worry and fear, faded away so quickly and was replaced with such joy and wonder at all she could do and all that she was becoming each day. I stopped worrying and just let her be. Even now, seven years later, I am filled with amazement at all that she has become and the worry that I had those first days of being a new mom are stored deep in my heart and only rise to the surface once in awhile.
But with my Brady, the worry is never far. When he was first born and spent those many weeks in the NICU, I would watch him sleep and try very hard to relax and just enjoy being a new mom again. I would try and focus on his beautiful little face and his sweet fingers that tried hard to grip my own, but instead I would hear the constant beep, beep of his monitors that tracked his every breath. The beeping would make anyone fill with worry. I tried hard to block it out, but it was an impossible sound to shake. The sounds of a NICU are no place for a worrier.
Eventually, Brady came home and life took over. His years have been filled with many events and illnesses that have caused me worry. His lack of communication is a worry that keeps me up at night. I have waited and waited for his little voice to come. Each day that passes without a word or a sound, fills my ear with so much worry. Each year that passes without a wave hello or goodbye makes my mind drift in a million directions. Every milestone that passes us by and answers that don't come, make me worry about my son's future.
Since Brady's type 1 diabetes diagnosis in February, I have found new things to worry about. Is his blood sugar low or high? Is he tired or is his blood sugar just low? Why is he tripping over his feet-is it the hypotonia or is his blood sugar high? Is he OK to put on the bus, is it OK to drive off to work and leave him on the bus? The other day, I tested Brady's blood sugar, as I do every school day, minutes before we were to head outside to wait for he bus. He was acting a little out of the ordinary, but, with Brady, there could be a million reasons why. When the meter read 508, I knew I was not putting my son on the bus. I knew he was not going to school that day, and yes, I was not going to work either. All the working mom worry came into play and I worried about all the things that I would have to change about my day. After a day of blood sugar testing, calls to the doctor and a little more insulin, I was ready to send Brady back on the bus the next day. He was still a little out of sorts, but was happy to see the bus peek around the corner. I helped him up the bus steps, strapped him in his seat and kissed him on the forehead just a little bit longer than most days. My gut was filled with fear and worry as the bus pulled away. All day at work, I couldn't shake that feeling. I waited for his school to call. I waited for my husband to call. I watched the clock. Finally, it was 5pm and I hurried home to get a precious hug from my special little boy. I made it through the day. He made it through just fine. I worried for no reason.
Parents of children with special needs have worries that other parents will never have. We wish and hope for simple "worries." We wish we could worry about a "cold" or the flu or juggling play dates or making a team. But we don't. Instead we spend our days, years worrying about our child's special needs and their uncertain future. With all that worry, though, comes such amazing return. We are blessed with little miracles who remind us how unpredictable and beautiful life is, even if it is not always the way we planned it. Yesterday, I was playing in the backyard with my children. I was chasing Brady around and swatting sand toys out of his mouth. My voice must have been filled with some worry, because my daughter Molly looked up from swinging and said, "Mom, please stop worrying, he is finally playing." She was right. He was pushing the sand in the sandbox around with his fingers. Something he had never really been interested in before. He was just playing and I should let him just be. I should stop worrying...and just be happy.