When you have a child with juvenile arthritis, you don’t just have to think about achy joints and, in my case, inflamed organs. Just this week on Facebook, I have seen other JA moms and teen patients posting about the following:
**pirate patches to treat symptoms of eye inflammation
**botox injections in the GI tract for symptoms of inflammation
**finding ways to reduce nausea from the chemotherapy injections that so many of our kids get
**not knowing how much information someone really wants when they ask about our children
**a child so accustomed to pain that they don’t realize (or won’t admit) they may have been injured in a fall
**being billed for cancelling a non-emergency appointment because their child had an emergency appointment
**strollers for kids that are too small for a wheelchair but can’t walk long distances
**scheduling appointments around vacation and/or insurance changes
**parents managing their own illnesses while trying to care for their children with a similar autoimmune illness
**comparing our children’s rashes
**overcoming public misconceptions that only old people get arthritis or the illness isn’t serious
**helping young children deal with anxiety that develops after they start getting injections
**hoping a child’s eyes will be healthy when there is a history of uveitis, which can cause blindness
**the ever-present struggle to raise awareness of and research funds for juvenile arthritis
The strange part of this list is that all of these conversations seem perfectly normal within my social circle. What kind of life do you have when you and your children (healthy and otherwise) are so accustomed to medical issues that things like eye inflammation, chemotherapy nausea and refilling prescriptions are everyday topics of conversation? How many regular parents have discussions about injection techniques, comparing lab results, managing our kids’ “roid rage”, and juggling doctor appointments? This difference makes things particularly problematic when socializing with parents of healthy children. It’s almost like a non-parent trying to fit in at the PTA meeting — it’s just a different world.
But it’s not all bad. The people I have met in this new world are some of the kindest, most compassionate people I have ever known. They are empathetic, supportive, and always available to lend a shoulder or an ear. We just “get it”. We never compare notes about how our kids were cheated out of trophies or missed making the all-star team. We don’t complain about how our kids worked so hard but just missed out on making straight A’s. We don’t care who is the best dressed, has the biggest house, or drives the fanciest car. We aren’t worried about how much our kids achieve, because they are pretty darn incredible just dealing with their illness (or a sibling’s) every day. We pretty much all want the same thing. For our kids to be pain free and have a normal childhood.
Isn’t that what every parent wants, a healthy happy child? For some of us that takes a little more work than others, but our kids are worth it.