• Bountiful Bridge

The family journey through Juvenile Arthritis

Updated: Oct 7

She woke up this morning and was immediately upset. She overslept because she forgot to set her alarm. As she jumped up realizing that she was late, instant pain hit her right knee. It’s always the right knee with Juvenile Idiopathic Arthritis.

I happened to be entering her room when this happened and she started to cry. It hurts to move, to walk, to get dressed, to start her day. I left her to get dressed and she found me a few moments later. She was dressed but couldn’t walk well on her right side. So, I carried her down the stairs. She needs breakfast so her pain medication won’t upset her tummy. She needs a topical ointment on her knee to help reduce the swelling and pain. As she begins her school day, remotely due to COVID, she sits with a cute stuffed animal heating pad to also help with the knee pain. The blessing is that she doesn’t have to walk up lots of stairs or down long school hallways while carrying an ever-full backpack. This is just one morning in our house as we navigate our way through JIA.

Yes, it impacts the little person feeling the pain. But this disease, as I’m sure with any other disease, impacts every person close to it. On many different levels. It’s a hard journey and one that we haven’t quite figured out yet but we are trying our very best.

She was not even three when our lives changed forever. An ever energetic pre-schooler, she was excited to be going to school! She ran down the hallway to her room. I was just a few steps behind her when I found her lying on the floor crying, holding her leg. I immediately thought she must have sprained or broken her ankle. I rushed her to the ER thinking the worst was a cast and crutches for a 2 1/2 year old. No break, they said. Perhaps a sprain but we would need to follow up with a pediatric orthopedist over the next few days.

While we waited for the scheduled appointment, we kept her leg wrapped, iced and tried to keep this busy girl as still as possible. Over time, her knee hurt so bad that she resorted to crawling.

One night while giving her a bath, I noticed that her right elbow was twice the size as her left. I panicked? What was going on? Why was she suddenly having swelling on her leg and arm?

The doctor was quick to explain that she had Juvenile Arthritis. I had never heard of this and thought that arthritis was something that elderly people dealt with. I was confused.

Juvenile Arthritis impacts over 300,000 children each year. It is something that is managed (amazingly well thanks to doctors, scientists, and miracle medications) but there is no cure. Children tend to go into a remission state around puberty. If this doesn’t occur, then it is an ongoing pain battle for the rest of their lives. I pray every day, several times a day, that this doesn’t happen to my little girl.

Even though JIA affects 300k children, it truly impacts so many more people and in so many different ways. As with many other diseases, the impact on the family is often overlooked.

The siblings tend to have jealousy issues and have a hard time understanding why they feel like they don’t get as much attention. As parents, we are grateful for the health of our other children but try to understand their hurt feelings. They are envious of the missed days of school for therapy or doctor appointments. They see cuddles and attention given to the one that is in pain. When we tried to go dairy-free and gluten-free for a time, there was a sisterly divide and anger was very apparent among all three. Blame was quickly pointed at their sister and their mean mom that was just trying to make everyone a bit more healthy.

It’s not all negative. There are moments of amazing sisterhood, like when it is time for her weekly shots. We all gather around, hold her hand, and count “1, 2, 7!” When it’s done, life goes back to normal. And that’s a good thing.

As parents and caretakers, we are navigating so many different issues when dealing with an ongoing disease. There’s the daily rituals of medication, therapy, and evaluating pain levels for someone that can’t quite accurately explain how they are feeling. There is doctor appointments, physical therapy, making sure that the school knows of her condition, talking with the school nurse about administering medication, and paperwork. Yes, paperwork. Every year. Every time there’s a change in medicine. It’s all for the benefit of the child but it’s so much more. We worry about the sibling issues. Is she excelling at school? Is she growing as she should? What is she not telling us? Will this family outing be too much for her? When should I make the call of not doing something because it will be too much for her? How will the other family members respond? Will they be mean to her? Are they ok? Do they understand? Am I making the wrong decision? Does she feel singled out? Does she get teased when I’m not around? The questions, doubts, and parenting fears are endless.

Prior to COVID, we had been dealing with a side effect of JIA called Uveitis. It’s basically where calcium deposits collect in the eyes and if gone undetected, can eventually cause blindness. Luckily, we have a wonderful support system of amazing doctors that spotted this in her eyes right away. We have had many trips to the eye doctor and many prescriptions for steroid drops. Glasses are the norm and most recently, she has had trouble with double and blurred vision. As I type this, we are one week away from double eye surgery to correct these ongoing issues. And there’s no guarantee that the surgery will help completely. It won’t make the Uveitis go away but hopefully her vision will be clearer.

I was so worried about telling her about her surgery. I thought there would be tears and worry and a “why me” statement. It was the complete opposite. She asked me two questions: “Will it help?” And “ Will it make me see better”? When I answered yes, she said “Then, let’s do it.”

She gives me strength without even knowing it. She just knows she wants to feel better. Believe us when we tell you that there are hard days. More hard days are ahead with the impending surgery. But this somehow makes us stronger and smarter. We learn pretty quickly to let go of the things that aren’t so important like the sister-fight that they had over the weekend, or the parties and fun that they have had to miss because we are at higher risk for COVID.

Life is so far from perfect and there are days when I catch myself asking God to tell me “why her?”. I honestly think it’s because she can handle it. I faithfully and diligently pray every day that there is a cure for this disease. No child should have to face illness, no matter the illness. But, sadly, that isn’t the world we live in. Whatever illness our children may face, I believe there is a lesson to be learned and strength to be gained. Fair isn’t a word that can be used for anyone’s benefit but strength and faith can.

Faith over fear. That’s my choice.

Thanks for crossing this JIA bridge with me. If you are facing this disease or caring for a child with an illness, you have my heart and prayers. I truly understand you and gain strength from knowing that I am not alone. And you are not either.

Until next time -