It’s just a bike. That’s what I told myself, but as soon as I’d posted a photo of the bike…. wanting to find another home for it, rather than letting it senselessly take up space in our garage….I realized it was more than just a bike.
I had purchased this bike two years ago, after noting my son was about to outgrow his smaller 16” bike. He had tried to ride the new red one only once, and discovered….. that he couldn’t. The bigger, heavier frame was impossible for him to peddle.
It was one of the catalyst moments that fateful summer where I said, the doctors are missing something, and this wasn’t simply growing pains causing his leg discomfort…something else was WRONG.
Two months later we began our year long tour of specialists, with test after test hoping to find an answer to our burning question of “WHY?” The bike symbolized the start of a new reality for our family.
The present week had already been emotionally charged for me for lots of reasons….so perhaps I should not have jumped into the bike purging project all things considered. This very same anniversary week we’d been told the worst possible scenario in regards to our son’s suspected diagnosis. Even the possibility of dystrophy was heartbreaking, and we grieved the potential loss of our beloved boy exactly one year ago this week.
I know this may be hard to understand, but if you’ve never been told your child might possess a condition with a rapidly approaching expiration date….I don’t know if you will fully understand what I’m going to try and put into words.
Even though the doctors were wrong in the end, and though every one greeted me after those particular negative tests results came back with the words “aren’t you so relieved??” I wasn’t. I couldn’t be. We had already started to grieve a lost child. You can’t undo that particular pain.
That was the most unanticipated side affect of this whole journey….to grieve the loss of a child still living. In many respects he is not the same boy looking back at me. He is altered. So the grief wasn’t totally misplaced, we did lose a version of him during that year as he is older and altered walking the journey of a patient. The challenge now is writing a new story for him.
We still don’t know what tomorrow holds. My greatest fear continues to be what the next growth spurt may bring should his muscle continue not to be able to keep up with his maturing bone structure.
We lost significant leg mobility when he grew a few years ago as that was the beginning of all the initial symptoms. As a ten year old his is very far from completing this growing stage. So we are taking a break this year from questions they can’t seem to give us answers, and instead focusing on a goal of muscle growth.
Growing and changing young bodies mean we don’t know our long term variables, and that’s the hard part for me as a mother. We never get to exhale, or predict next challenges, and things like the wheel chair we recently rented on a family trip could become our always. We just have to do the best we can today.
I’m fighting time and a mystery of the cruelest kind for I believe it is a thief. Stealing from our son more than just mobility. He’s not a little boy any more, he’s heard too much, he’s questioned if he was dying, and that’s the saddest part of all this entire journey to me. Had we found out a cause….then the sacrifice of his childhood innocence would have felt like it had a purpose….but we didn’t get that result, and that leaves my heart heavy.
Fighting like I have been doing on his behalf is a long term battle, and it is tiring. Because of that…..it might mean there’s a good chance a person may or may not burst into tears loading a what should other wise seem like “just a bike” into their neighbors van because of all that it represents. Yes that’s what totally happened. That won’t be awkward at all at the next neighbor outing, but she was very gracious with her response.
Grief never ceases to surprise me….just when I think I’m no longer under its spell a memory reminds me its grip is tight. I pray for time to heal my heart, and I fear what it might bring all in the same breath. What a strange place to find oneself hunkered down in….but here we are walking a borderland.
Summer Smith is a speaker, writer, and motherhood blogger. She and her family are currently navigating the suburbs of Northern Virginia. As the mother to four young children, Summer maintains her sanity thanks to her sense of humor, copious amounts of coffee, and Amazon Prime. Maya Angelou once said, when reflecting on her childhood, that her mother left an impression like technicolor stars in the midnight sky. Influenced by these words, Summer blogs at her website Motherhood in Technicolor, and can also be found on her Motherhood in Technicolor Facebook page.