“It’s funny how the hours feel endless, but the years fly by.”
Many parents have told me how their children seem to grow up in the blink of an eye. They’ve also told me about how long the hours can be, about sleepless nights and days that never seem to end.
Parenting is a full-time, around-the-clock job, but parenting a chronically ill child can feel like you’ve taken on another full-time job. In particular, parenting a child with juvenile arthritis (JA) can be challenging. Many parents of kids with JA I’ve spoken with (my own included) have mentioned how endless the hours felt at times.
A full-time job
While some people may hear “juvenile arthritis” and think it’s not so bad, you know differently. You know the life-changing impact it’s had on your family. It’s so much more than giving your child a Tylenol when they’re achy. It’s dealing with a painful, exhausting inflammatory disease, and trying to comfort your child any way you can.
People don’t realize how trying JA is on the family, especially the parents. It’s exhausting. Hours will drag while you are “riding out the storm.” There will be nights that never seem to end, when flares require late-night Epsom salt baths, massages, heating packs, and any other comfort you can possibly offer. And there is no end to the amount of time spent worrying, praying, researching, and waiting.
Life goes on
But it’s not always that way. Life with JA is very difficult at times, but life is what we make it. There are depressing, painful, and even scary moments. But there are also many great memories to be made: There will be celebrations, victories, and graduations.
JA has a way of changing, and some days will be better than others. Good periods or remissions may even last a while, and some kids do get better with age. Flares can be severe and feel like they last forever, but they eventually calm.
Parents, you are not alone. There are so many parents of kids with JA and other chronic illnesses who have been where you are now. It’s not easy, but no one should ever have to do it alone. Don’t hesitate to reach out for support. The Arthritis Foundation (U.S.), Cassie and Friends Society (Canada), and Versus Arthritis (U.K.) do a wonderful job connecting families who are fighting JA. It doesn’t take away all the pain, but it helps tremendously to know you have support.
Note: Juvenile Arthritis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Juvenile Arthritis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to juvenile arthritis.