It started as a swollen index finger that never went away. Multiple x-rays, a ton of blood work, visits with a pediatric orthopedist, a cancer scare, an MRI, consultations with two pediatric rheumatologists at Vanderbilt Children’s Hospital and nine months later we learned her official diagnosis. By that time the swelling had progressed to all of her fingers on both hands and both ankles. Her rheumatologist explained she had juvenile arthritis affecting multiple joints. He spoke pretty straight to prepare us for what she faced while trying to reassure us it could be managed with long-term medication. My husband and I were overwhelmed, and to be honest we’re still trying to wrap our heads around it.
Although there is not nearly enough research being funded for juvenile arthritis, (Ellie is one of only 300,000 children in the entire country facing this.) we’re thankful it’s no longer the crippling disease it once was. But the reality of what could happen is terrifying. We desperately need answers and reassurance, but that’s not available. There are no explanations for why her body attacks her healthy joints. The inflammation could go anywhere at any time. Our goal is to get it under control as soon as possible and get in front of the disease. The first round of medication she tried didn’t work, and her arthritis progressed. She’s currently taking three medications—one I crush up and sneak into apple sauce each morning, one she has to drink daily and one weekly injection that we were trained to give her. I’m not going to lie; it’s tough. We used to call her a rockstar after she’d take her medicine or get a shot. After a couple of weeks she looked at us teary-eyed and said, “I don’t wanna be a rockstar anymore.” She doesn’t understand. How could she? She’s only three. The fact she has to comprehend arthritis and long term medicine makes me sad. I just want her to focus on being a kid.
I’m also very angry that it’s her and not me. I can hop right out of bed, but my sweet daughter can't. Our morning ritual is often long and can be frustrating. It’s difficult to be patient. I pray for understanding for her. And for Laddy and me. She calls weekends “getting up easy days” and that cracks me up. I like that better too.
We’re stressed about causing her unnecessary anxiety. The information we received encouraged us to be completely honest with her so she can learn to accept her condition, but it’s a lot. Hell, it’s a lot for me, and I don’t have to take the medicine or the shots. She sometimes asks if it’s “shot day” and we worry it’s stressing her too much. I wish I could fix it, but no amount of bear hugs or kissing it better will make it go away.
The number of doctor’s appointments that has become our new normal is overwhelming. It includes monthly bloodwork at Children’s Hospital to make sure the medication to help her arthritis isn’t hurting her liver or kidneys. And who knew the inflammation could go into her eyes? We visit the ophthalmologist every three months to ensure her eyes stay safe. For the time being we’re going back to Vanderbilt every six weeks until the doctors can get the correct combination of medication for her.
Mostly, I’m a worrier. I’m troubled about the pain she feels that she never ever complains about. It’s both good and bad that she doesn’t whine a lot. I’m not sure I could deal with her crying all the time, but my heart breaks when I think about the rheumatologist explaining that the stiffness and discomfort she feels is her normal. I’m concerned about unknown future flare-ups. I’m worried people may treat her differently. I don’t want her to be known as the kid with arthritis. I want them to see her as the absolutely incredible kid she is who loves coloring with markers, playing outside, gymnastics and Scooby Doo. I’m nervous about the potential side effects from the medication. Thankfully her only side effect so far has been exhaustion. Her fatigue seems to be getting better, but it can come and go without much warning and usually is most prevalent the day after her shot. I’m worried about the possibility of future bullies who may make her feel self-conscious. And I’m concerned I won’t be able to adequately balance when to rescue her from pain and when to push her to do more or try harder.
Our daughter has proven to be incredibly brave. She may be shaky when she rolls up her sleeve, but she is one tough little girl. She doesn’t scream or throw a fit. Her palms may be a little sweaty, and she may feel nervous, but even at three years old she refuses to let it get the best of her. She’s my hero. Last week she thanked us for taking such great care of her. If she’s not crying, we certainly can’t…at least not in front of her. We took turns leaving the room for a minute to get it together.
We’re also striving to enjoy the little things in life just a little more. Ellie calls everything from rocks to sticks “treasures” and loves to collect them all. I admit it used to annoy me to constantly discover these treasures throughout my house. Not anymore. My husband and I are now following her lead. We’re simplifying. We’re working to laugh more and worry less. We’re giving more and getting less. We’re trying to breathe more and obsess less. We’re sunset watching, star gazing and collecting all types of leaves and acorns. We’re seeing the beauty that’s all around us more clearly now. And we know everything will be okay.
“You have to accept whatever comes and the only important thing is that you meet it with courage and with the best that you have to give.” Eleanor Roosevelt