Tag Archives: kids

Parenting With a Chronic Illness 101

When I got pregnant with my one and only child, I was an active and vibrant twenty-something year old. I had a great career that allowed me to travel all over the country. It challenged me at a level I wanted and, not to mention, it paid awesome. Those early years of parenting were difficult as a working parent but so worth it. I have to admit I felt like Supermom. Mom by night and worker bee by day. I thought I had it all. At some point, I switched careers so I wouldn’t travel anymore and could be home every night with my little one. But I still felt like Supermom. I am sure other working parents can relate.

Then IT happened…

I was about to turn 30. My husband and I were talking about having another child. I was comfortable in my new job. I was happy. But then I got a headache. I was never one prone to getting headaches – maybe one or two per year. But this headache was different. It didn’t go away for two weeks. And then it came back for a few more weeks. I knew something was wrong. I knew this was not normal. It took me several appointments with my family doctor and a neurologist who didn’t specialize in headaches or migraines before I realized they couldn’t help me. However, I am a researcher and did my due diligence. I found a top headache/migraine center not too far away in Philadelphia called the Jefferson Headache Center. It took two excruciating years of trial and error – plus a week-long stay in the hospital¬† – to stop my now daily, chronic migraine. I felt like I was in a nightmare until the pain stopped. However, by then, my brain and central nervous system had been rewired to amplify any and all pain while decreasing the neurotransmitters that suppress pain. It was a formula for fibromyalgia that was eventually diagnosed a year later.

Meanwhile, I was still trying to be Supermom to my little toddler. He was only three-years-old and could not fathom what was going on. I put all my energy into hiding my illness from him while my husband and I frantically looked for answers for my health. For those few hours after work that I would spend with my son, I would try to be active and play with him only to crash as soon as he was in bed. It was a strain on all of us.

Despite my best attempts, my son knew something was wrong. The pain was written all over my face. It was programmed into the way I walked, the way I moved. I could not hide it from those close to me. One night I was crashed on the sofa while my son played with his blocks. He came over to me with his Jaffy (an orange, stuffed giraffe he got as an infant and could never be without until he was ten) and place the raggedy animal on my head. “Jaffey will make you feel better, Mommy,” he said. It was so cute and sweet that I wanted to cry. My illness was already impacted my son. I felt like a failure as a parent because I couldn’t protect him from seeing his mom hurting. It was my first lesson in parenting with a chronic illness.

A Life Lost

When I was younger and taking my first steps into adulthood and real-life responsibilities, I had a vision of what my life would be like. It wasn’t a set-in-stone plan with every minute detail laid out. It was a living vision of things I wanted to do – walk down a charming street in Paris, visit Scotland where my ancestors are from, see the Colosseum in Rome, hike in the Swiss Alps, go camping with friends, share my love of playing sports with my children, have two or three children, be a cool grandparent who could actually still do things with her grandkids.¬† However, some things just aren’t to be. Most days, I can live with this. I can focus on the positive things, things I can still do, things I appreciate more because of my illnesses. But then some days… it all hits me like a truck load of bricks, repeatedly. This past Sunday was one of those days. I was at my son’s soccer game watching all the kids running around and playing before the game. The players’ siblings and parents were on the sidelines kicking the ball around, throwing a ball back and forth. Some parents were talking about how much they enjoy coaching the younger kids in a variety of sports. I confess – I am jealous. I always saw myself as the the parent who would volunteer to coach her kids’ sports teams. I would play soccer or basketball in the backyard with them. I would take them down to the park and play tennis with them or roller blade around the neighborhood or ride our bikes together all around town or at the park with the bike paths. There was so much I wanted to do with my children. But I can’t. I don’t dare to even try on the best of days. I have learned I last all of five minutes before the fatigue hits or the pain kicks in. Not only that, but I only have the one child – my pride and joy. My health got in the way of having any more. My husband and I kept waiting for me to get better before having more. Now my son is almost 12 and that ship has sailed…

I watch my son and husband play in the backyard and the guilt and loss of not being able to join them is like a knife in the heart. I know I should be grateful for what I have and what I can do, and I am. But there are the days when the glass is half empty and leaking fast. I am not the person I wanted to be and that hurts more than any physical ailment. Regret is like that itch in the middle of your back that you just can’t seem to reach in order to scratch…