It’s easy to get caught up in the pain and emotions that come with the bad days. They’re overwhelming. But what I’ve learned while dealing with a chronic illness is that you’ve got to appreciate the good days. You have to make the good days count.
I was diagnosed with Rheumatoid Arthritis when I was just 25 – that was 12 years ago. I don’t remember what it feels like to have a day without pain anymore. Along the way, I became a mom to a son with Down’s Syndrome, and in the past few months I was diagnosed with an adrenal tumor and cancer.
Parenting a child with special needs is tough. It became even tougher after losing my husband. Now I’m doing it alone. Add a chronic disease and cancer and it becomes overwhelming. Lately my typical day includes caring for my son, trying to work, and sprinkling my day with rest breaks just so I can make it through.
It’s incredibly frustrating to have to recuperate on the couch after getting my son out of bed and ready for his day. Making dinner often leaves me feeling so exhausted I can’t even eat it myself. I get upset when I can’t do the things I want to with my son. Sometimes I cry when I find myself needing a nap after folding a load of laundry. I struggle with not having the energy and stamina I used to.
But I’m not here to tell you a sob story. I have good days. Lately they haven’t been very frequent, but I do have them. The worse my health gets, the more I’ve learned to cherish and appreciate the good days – the good hours.
Let me tell you about one of those good days. I’m a mom who loves sports. I love watching football and hockey. I like playing basketball and softball. I enjoy surfing, mountain biking, and rappelling – all things that are tough for me to do right now. Recently, I’ve become a huge fan of dirt bike racing, and so has my son. It’s been my dream to take my son to a Monster Energy Supercross race.
That dream came true! Thanks to the incredible kindness of a friend, my son and I were up bright and early on a Saturday and headed to MetLife Stadium in New Jersey for Supercross. I didn’t know if my energy would hold out. I was a bit terrified of taking my son to a huge event with no help. But we were both so excited.
That day was one of the most challenging and amazing days of my life. My son got overheated and had to be treated by the medical team. I came close to going down myself. I had to have help from the medical team and guest services to get my son to our seats and ready for the race. But when the gate dropped and the dirt started flying as those dirt bikes raced through the arena, the excitement and joy on my son’s face was a moment I’ll never forget. My exhaustion and pain dropped away, and for a couple incredible hours my son and I were swept away by the “braaap” of dirt bike engines, the smell of racing fuel, and the cheers of the crowd.
That day cost me. I spent the next day recovering on the couch. My body was exhausted. But even though I was frustrated with my body, I was smiling. I’ll soon forget about the rough days I had after that day, but the joy of an amazing day with my son, the smile on his face as he jumped up and cheered when our favorite rider raced by – I’ll never forget that.
Parenting a special needs child while dealing with chronic illness myself isn’t easy. Some days I don’t know how I’m going to do it. I don’t know how I’ll have the energy to get through the day. But I always do. And I’ve found there’s a lot of truth in the verse, “…and as thy days, so shall thy strength be.” Deuteronomy 33:24b, KJV
Kristen is a passionate writer, teacher and mother to a wonderful son. She is currently volunteering at Freedom Care, a company that helps with New York’s CDPAP program. She finds joy in being able to share her experiences dealing with her chronic condition in hopes of connecting with as many people as she can.