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 her 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, and start her day. I left her to get dressed and she found me a few moments later. She was dressed but limping 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 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, as she normally would. This is just one example of 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 completely figured out yet, but we try our very best each day.
When this began, she was not even three years old. An ever energetic little girl, she was excited to be going to school! One morning, 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 would be a cast and crutches. No break, they said. It was 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, applied ice and tried to keep this busy girl as still as possible. Over time, her pain was so bad that she resorted back to crawling to move around.
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. I thought that arthritis was something that only adults dealt with. I was so confused.
According to the Arthritis Foundation, 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 that this doesn’t happen to my little girl.
Even though JIA affects 300,000 children, it truly impacts many more people in different ways. The strong impact on the immediate family is often overlooked.
The siblings tend to get jealous and have a hard time understanding why it appears that their sister gets more attention. They often feel left out or that they are less important than the child that needs special medical attention. It’s a constant circle of communication to remind them that they are just as important. It is just more apparent when medication and doctors visits are involved.
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 extra cuddles and attention given to the one that is in pain. When we tried to make dietary changes for a time to see if it would help with her inflammation, there was a sisterly divide and their anger was very apparent. Blame was quickly pointed at their sister and their “mean” mom, who was only trying to make everyone a bit more healthy. However, we worked through this and tried to balance nutrition and meals to make it seem like we weren’t constantly taking away their favorite foods.
It’s not all negative though. 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!” By saying the wrong number, it makes everyone giggle and the shot pain a little less painful. When it’s done, life goes back to normal. And that’s a good thing. I give credit to my husband for this fun counting solution. I try to pass on giving shots since it makes me a bit queasy to think that I am inflicting pain on my baby girl.
Another positive outcome is how my husband, an artist, has taken his pain and worry about our daughter and turned it into art. He has created a unique painting using lipstick, or kisses, to highlight our lovely daughter’s eyes. He calls it “Kisses for Gracie”. Eventually, he would love to turn this into a campaign to support Juvenile Arthritis research.
Moving forward, we are navigating so many different issues when dealing with a chronic disease. There’s the daily rituals of medication, physical therapy, and evaluating pain levels for someone that can’t quite accurately explain how they are feeling. There are doctor appointments, 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 a lot to manage.
We also worry a lot. Is she excelling at school? Is she growing as she should be? What is she not telling us? Will this family outing be too much for her? When should I make the call to not do 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 complication of JIA called Uveitis. It’s basically where calcium deposits collect in the eyes and if left undetected, can eventually cause blindness. Luckily, we have a wonderful doctor that spotted this right away. There have been many trips to the eye doctor and many prescriptions for steroid drops. Glasses are the norm but most recently, she has had trouble with double and blurred vision.
A few weeks ago, it was finally time for double eye surgery to correct these ongoing issues, with no guarantee that the surgery would help completely. It won’t make the Uveitis go away but hopefully, in time, her vision will become more clear.
I was so worried about telling her about her surgery. I thought there would be tears mixed with worry and a “why me?” statement.
It was the complete opposite. She asked me two questions: “Will it help?”, which was quickly followed by “Will it make me see better”? When I answered yes to both questions, she said “Then, let’s do it.”
She gives me strength without even knowing it. She just simply realizes that she wants to feel better. Believe me when I tell you that there are hard days. Yet, this somehow makes our family stronger and smarter. Together, we learned pretty quickly to let go of the things that aren’t so important like the sister-fight that they may have had over the weekend, or the parties and fun that they may have had to miss because we are at higher risk for COVID.
Life is so very 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 without fear.
I faithfully and diligently pray every day that there is a cure for this disease. No child should have to face any 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 any one person’s benefit but strength and faith can.
Faith over fear. That’s my choice. And Gracie’s too.
