may think the doctors are wrong, the test results are off, or simply that your child will be one of the first to “grow out of it,” his or her symptoms magically disappearing the same way they appeared. Regardless, you’re not ready to admit that your child may have a serious, incurable condition.
Anger—After the realization hits that your child does in fact have the condition, anger sets in. Why did this have to happen to us? Why him/her? This anger can be manifested in many different ways, toward oneself, toward others, or even God.
Bargaining—Many times the bargaining stage involves offers to a higher power—“if only x will change, I will do y.” It’s a natural way of coping; an attempt to gain some control over a situation that seems devoid of control.
Depression—This is the time when we truly grieve for what has been lost. Feelings of regret, fear, and even hopelessness are common as the reality of the situation sets in. Being depressed is a natural part of the process, but you can’t let yourself stay there.
Acceptance—At this stage some of the emotion is removed and is replaced by practicality. The reality of the diagnosis is accepted, and you begin to form plans and take action. Your focus becomes: “What do we need to do to make our child feel better?” You also learn to make the best of the situation.
Flexibility Is Key
I used to have a fairly fixed schedule. Bedtime was bedtime; breakfast was an hour before we left for school; and so on. We had rules, and we stuck to them. For instance, if you were too sick to go to school, then you were too sick to attend a party after school, end of discussion. All that changed after my children’s JIA diagnoses. Although we try hard not to let JA be a crutch for skipping out on responsibilities, we have learned that some rules need to be reevaluated based on the circumstances. Flexibility is the key. It’s the only way to balance the needs of the whole child and the whole family, while preserving your sanity.
Take after-school events, for example. After several weeks of homebound instruction, Grant was invited to play video games at a friend’s house with a few other boys. The mom was aware of his issues and invited me to stay for coffee while the boys socialized. Grant was still in too much pain to attend even a half day of school, let alone be exposed to so many germs, but he was missing real human interaction with kids his own age. Despite the fact that his teacher didn’t come that day (he was ill from a methotrexate injection, a common chemo drug also used for rheumatology patients), I allowed Grant to visit with his friends. He was feeling better by the afternoon, none of the boys were sick, and he needed that time. I was able to be there in case we had to cut the visit short, and it was a very brief visit by design. Just a few months before, I never would have agreed: He didn’t do his “work,” therefore he didn’t earn his “play.” Those were the old rules, and in our old life, they were good ones! Now, however, rigidly following that rule would prevent Grant from socializing, ever. To complicate matters further, the times when Grant was feeling good didn’t necessarily correspond with the times his friends were free (or free of sniffles!), so coordinating a date when all the appropriate conditions were met would be nearly impossible.
Unfortunately, some parents didn’t understand how Grant could be receiving homebound services, be too ill to go to school, and yet be well enough to attend a birthday party, even if it was for just an hour on the weekend. If I didn’t jump on every opportunity when Grant felt well enough to socialize, he would never be able to attend. Stringently abiding by the rules was less important than preserving the tiny glimpses of joy and friendship in his life. Being flexible helped us to find that balance.
Different Priorities
Although our lives had changed dramatically, and we desperately wanted “the old Grant” back, JA did not define our lives. If anything, it created a paradigm shift in our family. It gave us a newfound appreciation of our old life, and life, period. We learned not to take any day for granted, and we reveled in the small successes. Sleeping through the night, going to school, even for a few hours, walking … things previously overlooked as givens were now cause for celebration.
We developed thicker skins, but at the same time expanded our empathy for others. We had witnessed, firsthand, so much suffering and sorrow. During Grant’s hospital stay, one of the other children on our floor lost their battle. We had met the family in the break room and talked together over coffee. We also heard the crash cart barreling down the hall in the middle of the night and saw the anguish when there was nothing left for the staff to do. This illness suddenly became very real. Hearing of another seriously or chronically ill child hits much closer to home now; and it still creates some very raw emotions, especially for Grant, who, at the tender age of eleven, was faced with his own mortality for the very first time.
At face value, this may all seem very depressing—truthfully, it was a very sad and difficult time. But that is only half the story. Although I would never choose this for my child, it has made our family stronger. It has made Grant stronger. We laugh harder and, of course, cry harder, too. In some ways, we feel much more alive! We have also become more grateful than ever—for Grant being a fighter, for friends and family who have come through for us, and for the simplest of joys. By necessity, we have streamlined our life and, in the process, reevaluated our priorities. We have found support in the most unlikely places and renewed our faith. Although the situation we experienced was quite a challenge (and still is, but on a much lesser scale), I am reminded that the only way coal becomes a diamond is through heat and pressure, squeezing out the impurities to create something even better. How you approach this disease will make a difference in how it affects your family. We didn’t choose JA, but we can choose how to live with it. We’ve decided to let it change us for the better, and so can you.
Did you know that juvenile arthritis is one of the most common childhood diseases in the United States? Approximately 300,000 American children are affected by pediatric arthritis and rheumatologic conditions—and the numbers are on the rise. And, yet, there is a great deal that is still unknown about this affliction. As I touched on earlier, there is no set course of treatment; symptoms can vary widely from child to child; and even the diagnosis can change over time since there are so many forms of the disease. It’s unpredictable, to say the least.
The broadest definition of juvenile arthritis is any form of arthritis or arthritis-related condition that develops in children or teens younger than the age of 16. The most common form is juvenile idiopathic arthritis (JIA), which means “from unknown cause.” Unlike osteoarthritis (the type you associate with aging and overuse of joints), juvenile arthritis (JA) is usually an autoimmune disorder. In adults, the condition is referred to as rheumatoid arthritis (RA). In both cases, the immune system attacks some of the body’s healthy cells and tissues. Research suggests that it may be a two-step process: something in the genes (a genetic predisposition or the presence of a known marker such as HLA-B27) makes the body more conducive to the development of the condition, and then something else, like a virus, can set it off.
The way an attack is manifested depends on the type of JA the child has. Once the child is diagnosed, the next challenge is to determine the specific type. The first six months after diagnosis are especially important, because each type of JA can respond to treatments and medications differently. In fact, certain treatments are only used for some subtypes and not for others. However, during an episode of high inflammation or “flare,” some treatments, such as the use of steroids, are common across all types. To further confuse matters, some children respond better to medications that are atypical treatments for their
