This is part four of a series where Heather shared her story of being a mother of two daughters with chronic illness. Read part one of Lily's story here, and Jewel's story here.
It took about one month to get an appointment for Lily at the children's hospital that was about an hour from our house. During that month I had lots of time to ruminate and research. What I realized in my research was that 1) 15 years ago there wasn’t treatment for Juvenile arthritis. They treated the children with gold injections. So now was a good time to be living with Juvenile Arthritis and 2) the current treatments for JIA, although there were many, included low dose chemotherapy, and medications referred to as biologics which had a link to a higher cancer risk. Without treatment Lily would be at risk for permanent joint damage. Children who develop joint damage often become physically disabled.
While we waited to get into the pediatric rheumatologist I made an appointment with an integrative doctor. He used a holistic treatment for autoimmune diseases that sounded promising. He currently had a pediatric patient with arthritis in her shoulders and the treatment worked for her after two treatments.
For the treatment, Lily would have to go off of her pain relievers for three days and endure an intramuscular injection every few weeks. If it was going to work for her it would work within the first three injections. Desperation drove us to try this medication. Before her first injection we ask the pastor and the deacons of our church to come over and pray over Lily, to lay on hands, and ask in faith for the treatment to bring a miraculous healing. Growing up my husband and I had been taught that things asked for in faith, and that were Gods will would be answered with a yes. Our faith was strong and how could it not be God’s will to heal my sweet young child.
After three injections we knew the holistic treatments were not going to work. I didn’t understand why God had not miraculously healed my child. The church was silent or worse their answers were our faith hadn’t been pure, or worse yet it was God’s will for Lily to have arthritis. So I began a struggle in my faith that continues until today. I rejected that our faith was not strong enough. I never doubted God’s ability to heal. I rejected the idea that it was God’s plan for my baby to be stricken with this debilitating disease. The God I knew, the One I had experienced for all of my 30+ years did not look down and pick and choose people for suffering. I could not accept that. With those rejections a line was drawn in the sand between myself and the conservative church I’d been raised with. It was better for the line to be drawn between me and them than for it to be drawn between me and God.
When we finally got into see the pediatric rheumatologist I had a three ring binder filled with articles, pictures of Lilys affected joints, her first blood work reports, and probably close to 50 questions. The rheumatologist was calm and patient. He didn’t seem to mind my questions and he seemed to find my research surprising. The pediatrician had already started the first line of treatment for arthritis, which is oral NSAIDs, naproxen twice daily to be specific. The rheumatologist was very positive. He said 60% of children with JIA go into remission, and often it happens within six months of treatment. I felt like I could hold on for six months. No matter how bad it was I could manage it for six months.
What the doctor or nurses didn’t expect, and what I didn’t know about, was that sometimes diseases continue to “bloom”. Within three months of her diagnosis of JIA Lily went from fingers, toes and elbow being affected to more fingers, toes, elbow, shoulders, knees, one hip, one knee and both ankles having active arthritis. Active arthritis means hot, swollen joints at risk of deterioration. While bloom used to be a word that meant flowers and spring, now it meant more sickness.
Lily spent more and more time on the couch under warm blankets, with heating pads watching her favorite shows to distract her from the pain and stiffness.
The more pain she was in, the more my heart shattered. I don’t think there are words to describe what it's like to watch your preschool age child suffering day after day in pain. Walking hurt her. She never ran. She didn’t jump. She didn't play with other children. She didn’t color or cut. Months passed with her in pain and there was nothing I could do about it.
That first panic attack I had the day we saw the pediatrician led to another and then another until I was having panic attacks weekly and then daily. I couldn’t sleep because of my broken heart. I would lay awake at night thinking about all of the treatment options, the risks, the future, the past and the future that I felt we had lost. What did her future hold now? Constant pain? Would she be able to manage college? Would she ever hold a pencil? Was she going to become bitter and angry? How was I ever going to teach my preschooler to live with chronic pain???
Shortly after her diagnosis I went on an antidepressant and and anti anxiety medication. I planned on never going off of them. I still take them today. The medications turned down my emotions enough that I was able to sleep again. It was such a relief to sleep. I remember like it was yesterday the first few mornings I woke up after sleeping all night and I was starting to feel human again. The medications turned down the intense feelings of brokenness in my heart. When I saw my four year old limp down the hall I didn't have a panic attack. I started being able to help her stretch a few times a day and when she said it hurt to stretch I was able to encourage her that moving around would help her to feel better. Although I understood that I needed to teach her to live with pain, I hadn’t had the ability to do that while my heart ached so acutely.
The rheumatology nurse trained us in how to administer the methotrexate injections. The syringe was a small insulin needle that went just under the skin. The medication didn’t burn like some of the other medications would. Methotrexate injections come in a small vile and the medication is bright yellow. They warn you that if you’re pregnant you’re not to even touch the vile. A pregnant woman can’t touch the vile, but a person can inject it into their preschooler. It felt conflicting.
My older sister became a type 1 diabetic when she was 8 years old and I was 5. I spent my childhood watching her give herself shots so the idea of giving my child a shot every week wasn’t completely foreign. I won’t ever forget the first time my husband and I gave her her injection. She was four years old and 35 pounds. She wrapped her arms around my husbands neck and I gave her the shot in her nonexistent love handle. She had no body fat at all. The nurse suggested we give the shot there as it had a little extra meat. It’s hard to know what it's going to feel like when a needle slides into someone body. When it’s your baby’s body the feeling is awful. When the medication is so close to poison it’s nauseating. As I pressed the needle into her skin the entire room went black and I was sure I was going to pass out. Through the darkness I could hear her cry of resistance. Then it was over. I put a Minnie Mouse band aid on the spot as a bright yellow drip rolled down her skin. I hugged her and told her what I would tell her every week, and then twice a week for the next 5 years while I injected her medications, I told her she was the bravest girl I knew and I loved her so much.
Written by: Heather Fenner