Our Big Messy Life

Every day and everywhere I go, I hear from busy moms, “My house is a mess and my kids don’t pick up after themselves.” I am that mom, and I’ve said those words too many times. We have always had busy lives, shoes and backpacks inside the door, a sink full of dishes, and laundry to fold.

My daughter was a cheerleader and my son played football, and eventually lacrosse. We spent our evenings and weekends on the field and in our minivan; they changed from one set of sports equipment to another. There were always dirty sneakers and cleats thrown in the back of our van along with empty water bottles. I didn’t like opening the back hatch; you never knew what would come falling out.

Our back porch was the catch-all for smelly, sweaty helmets, pads and dirty lacrosse sticks. They would air out there and I would Febreeze them the next day and off we went. If I didn’t make it home from work on time, my son would ride his bike to practice and I would meet him there. Then, after practice the bike would go in the back of the van with everything else. We would do it all again the next day. How do we go at that pace for so many years? Moms, it’s just what we do!

To my surprise, all of this changed in one moment in time. No, my son didn’t become a neat freak overnight or grow up and move out on his own. My son became a paraplegic.

Our world was turned upside down in one afternoon. No one can ever be prepared for the shock and the all-encompassing fear that takes hold of your family when you experience a trauma of this magnitude. There are no more typical schedules or routines. Everything is new. You are now back at the starting line…with no direction, only questions that cannot be answered.

Life as you know it slows down for a while; you are unable to be the same person you were before. Whether that be a member of a sports team or hanging with a certain group of friends. Life is different now; you are part of a community that you didn’t ask to join.

You miss so much…friends, dinners out, weddings, weekend trips to team tournaments. You wonder how everyone else’s life is still moving forward but yours is upside down and inside out.

Why did this happen to my son and our family? How did we get to a place where our house is filled with medical equipment and supplies that arrive via UPS every week in order for my son to complete the simplest of personal tasks?

He is home a lot now; he doesn’t visit friends or run through the trails in the woods. If he does venture out can he get through a door? Can we take him to a public place? Can we park? Will his wheelchair fit? Can we go to the birthday party at our neighbors’ house? Will he have to stay down in the grass while the party is on the deck? Do they have a downstairs bathroom?

No decision is made easily or without taking into consideration so many obstacles. You work around it all and make compromises. It’s hard and you cry a lot, but put on a brave face for others.

You wish that some were more aware. But how could they be? We knew nothing of this lifestyle until being thrown into it without warning. Somehow, someway, you fight your way back to a “new normal.”

Time passes and then one day you are in your new life. After coming home from work and loading the wheelchair into the back of the minivan, attending wheelchair lacrosse practice with your son, you drag the smelly sports equipment back home onto the back porch and you trip over the lacrosse sticks.

As you sit on the floor of the porch in the midst of the mess, you shed the most joyous of tears and think about how much you’ve missed that smelly equipment. I now have a strange love affair with lacrosse sticks. My house is still filled with clutter, dishes and laundry still pile up, water bottles and medical supplies are everywhere, and I am blessed enormously with a big messy life that I cherish every day.

Sharon Drennan is a wife, mother and grandmother living in Richmond VA. Her son Rob was born with a rare disease, Blue Rubber Bleb Nevus Syndrome, which ultimately caused his paraplegia. Sharon searched for an accurate diagnosis for her son for many years. Since that time she has built a global community of BRBN patients and supporters. You can find them at https://www.facebook.com/groups/bluerubberbleb/