Fresh Start Fitness

When I was pregnant with my middle son, Levi, I went into labor at 35 weeks. While I was in the triage room at the hospital, his heart rate began to decelerate and the nurses rushed in to turn me on my side, then wheel me back for an emergency c-section. I was given general anesthesia so while I went to sleep with the sound of alarms blaring and bright lights of an operating room, I woke up in a quiet room with my belly feeling like it was on fire, and no baby in sight.

The neonatologist who came into the room told me that when they got him out, he was not breathing and had the faintest residual heartbeat. He was resuscitated, intubated, and lay motionless with his eyes closed. Levi went by ambulance to the children’s hospital while I stayed in my recovery room.

At Children’s, he received cold cap therapy for 72 hours to induce hypothermia to his brain. Within 12 hours, his eyes began to flutter. At 72 hours, the cap was removed and life-sustaining measures were stopped, and Levi stayed with us.

After 17 long days, he was ready to leave the NICU. He was not able to master swallowing so we came home with thickener to mix into his bottles. His body was stiff and rigid and his eyes didn’t track movement in the normal way. We also knew he had a hearing loss and would be fitted for hearing aids.

It is a strange feeling to have a baby in your arms and trying to grasp that everything you dreamed for their future is different from what you imagined. It is gratitude and pain. It is being totally exhausted from the regular newborn experience and totally exhausted from constant worrying, endless appointments, drowning in bills, and the fear of the unknown.

At some point during those first few months, we figured out that our son’s life is not made worthwhile by whether or not he can walk, talk, hear, see, get married, have a job, be an athlete, or be a scholar. We love him because he’s our son, and he is his own unique and beautiful soul regardless of what he can do. He just, is.

Levi spent 3 years in outpatient speech and feeding therapy, occupational therapy, and physical therapy. He learned to walk with SMOs on his little feet. He mastered swallowing and graduated to regular liquids and food by age 3. Due to the hypoxic ischemic event (ie brain damage due to a lack of oxygen during birth), he was diagnosed with cerebral palsy. He reached his baby and toddler milestones late, but with the most sincere effort and intensity than any baby has ever had.

Levi’s nickname for the last decade has been: Determined Since Birth. He is the most hardworking kid in school, sports, and life. Others are dreamers, and he is an achiever. There is nothing that he can’t do because he will work harder than anyone else to achieve it.

Last year, Levi took his first hard hit on the ice at a hockey game. Later that night, he screamed from the bathroom and I found him on all fours, clutching his side. We took him to the emergency room and he had an acute kidney injury from the hit that resolved within a few hours. His main concern was whether or not he was going to have to miss any games.

A year later, Levi and I were running together to train for a race when he started complaining of a side cramp. “It’s dehydration, you’re untrained, breathe through it,” were my responses. He stopped running and said, “I think it’s my kidney.” And now here we are, in a very surprising place, to be learning that our 11 year old son has kidney disease.

I really hate this space of feeling like my head is underwater. I have been here with Levi when he was a baby and I have been here with my oldest son when he was diagnosed with Inflammatory Bowel Disease. It is hard to concentrate, it’s draining, and it’s overwhelming. What we have in our favor this time is the evidence of what lies behind us: it’s not about what he can do, but who he is. Who he is: Determined Since Birth. Who I am: capable, smart, loving. What we have gone through before has molded us into people who have more tools, wisdom, and insight to use now.

It doesn’t work this way, but in my heart (and sometimes with my mouth), I complain about the unfairness. We have suffered enough! But in truth, there is no person (adult or otherwise) who can tackle this thing like he can. He can do it. He is the amazing Levi.