Living with Juvenile Arthritis. Kimberly Poston Miller
realize it’s easier said than done, but rest whenever you can—and don’t feel guilty or indulgent. Schedules are crazy in the hospital, so if you can catch a catnap at the same time as your child, you should. Vital checks, routine monitoring, and medication administration make it hard to snooze more than an hour or two at any time, night or day, and sleep will help give you the mental clarity you need to communicate with the doctors. This small attempt at taking care of yourself is actually an important part of ensuring your child will get the best possible care.
Plan Ahead. Depending on the admission (anticipated for a procedure or an emergency that results in inpatient stay), you may have a few days or just an hour or two to prepare. After our first admission, I had a bag packed and ready to go for each of us, just in case, and kept the “right” snacks stocked in our home so I wasn’t making an extra trip to the store.
Don’t Be Afraid to Ask. Once you’re at the hospital, ask the nurse if she will order the thick pads that resemble egg crates for your chair and your child’s bed. They are usually available, but you have to ask. After getting settled, ask your assigned nurse what other services are available. For instance, do they allow you to check out video game consoles? Do they have DVDs on loan? At children’s hospitals, they usually have a child life activity center, as well as child life specialists who can bring age-appropriate diversions to your child when he or she is feeling well enough.
Don’t Bring Too Many Activities. It may seem counterintuitive, but if you supply every imaginable activity to keep your child occupied, there won’t be anything left for visitors to bring. When friends and relatives ask what to bring, you can recommend activities that your child enjoys, such as crossword puzzles, Sudoku, crafts, or books. This way, your child will feel loved and surprised, and the activities will be spread throughout their stay.
The New Normal
The upheaval we experienced from Grant’s illness spread to all areas of our lives and affected the entire family. Evan no longer had the “homeroom mom” he did before. Caring for Grant and making doctors’ appointments had priority over bake sales and field trips. I saw Evan very little during this period, even though I was still a stay-at-home mom. Thankfully, Grandma helped with homework and picked him up from school while his dad was still at work. Time with my husband also diminished—we rarely even slept in the same room, since he needed to rest for work, and I was up to give Grant his medications every couple of hours. The schedule was almost like having a newborn again.
Because Grant’s immune system was so suppressed due to the medications, we no longer had friends over to the house. We had been warned about exposing him to others who could possibly be ill or carriers of illness. We thought twice about going out for anything but the necessities for the same reason. It felt as though we had become prisoners in our own home.
Nothing was routine anymore, and we all had to adjust. Most parenting websites and books will tell you that children need routines. Even when dealing with a chronic illness (some would say even more so), it’s important to stick to as many daily routines and habits as possible in order to help the child cope with his or her new reality. While I agree with this advice, I learned it doesn’t always work. When there is a flare or a big bump in the road, such as a hospital stay, everything goes out the window! There is no routine. You deal with things as they come.
With many other illnesses, there are defined beginnings and endings, courses of actions and expected outcomes. The autoimmune family of conditions is far less predictable. Just when you think you have a good rhythm going with medication or have established the right balance between rest and activities, something changes, and your child may respond differently each time. It will take time to figure out what works best for your child and your family. Then whatever you found to be “best” will evolve. Being adamant about sticking to one plan or routine that did work will just drive yourself (and others around you) insane! It can be very disconcerting, but there are things you can do to ease the transitions.
MOVING THROUGH THE STAGES OF GRIEF
In many ways, being diagnosed with a chronic illness or having someone you love being diagnosed with one is a death of sorts. Even though the prognosis may be good, it’s the end of the “old” life as you knew it and the beginning of a new, sometimes dramatically different life. In her 1969 work Death and Dying, renowned sociologist Elisabeth Kübler-Ross defined five stages of grief. Although the original intent was related to the feelings faced at the end of life, I believe most parents will see themselves in the model she outlined. The following are my interpretations of the Kübler-Ross stages of grief as they apply to your child being diagnosed with a chronic illness.
Denial—In this stage you don’t want to believe this is your child’s diagnosis. You 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