For years, I’ve been in the habit of signing my entries to community boards, chats and e-mails to others in the arthritis community as “Colleen, mom to Caitlin, systemic JIA, age….” And that says a lot about what so much of our focus has been for the last eight years. But you know what? Like everybody, I actually have a couple of other hats that I wear. One is them is just plain “Mom”. Because I also happen to be blessed with two other beautiful children, both boys. One of them, Jack, is turning seven today and has me inspired to write.
When Caitlin was in the hospital being diagnosed, I didn’t know it at the time, but I was pregnant. I went in and out of x-rays, scans, the MRI room, didn’t sleep or eat and existed on caffeine for days. Not exactly a great way to start a pregnancy. When we finally figured out a few weeks later that I was expecting, I initially was very concerned about my lack of care with my health. However, everybody around me was sort of overjoyed. We all sort of felt that God and the universe would not have given us this gift in the midst of this horrible diagnosis unless it meant that Caitlin was going to be OK. Never more than we can bear, right? Totally irrational – but I admit, comforting. Nine weeks later, I miscarried. Three days after that was September 11. All of a sudden the message I was picking up from the universe was not so positive.
We took that loss as an opportunity to really examine the idea of another child, under the new microscope that arthritis gave us. The idea that life was smooth sailing, and that healthy children were a given was an antiquated notion to us suddenly. What if our next child would get arthritis too? Was it selfish to want another child and take that risk? Would the future costs of arthritis make it prohibitive to provide for another child? If we chose not to try for more children, what would it mean to our daughter to grow up as an only child, when she would already end up being the center of attention so much anyway? After much pondering, we rolled the dice again…. And five short months later, we conceived Jack.
From the very beginning, it was clear that Jack’s life would also be affected by Caitlin’s arthritis. In some good ways and in some sad ways, her immediate needs shaped what he was able to do and have. When he was a baby, I remember strolling him around the hospital twice a week while she attended physical and occupational therapy. Those days I wondered if he was missing some times in the park, and if I was purposely rushing those precious hours with him, just to make them go by quicker. There were many afternoons that Jack could not be outside playing, because Caitlin was feverish and stiff…. and needed to be carried to the restroom, lifted in and out of the bath, and assisted in stretching exercises. I can remember more than one time that Jack’s trip the fair was shortened because Caitlin simply could not endure any longer…. And times that our weekend activities were chosen based on what was physically feasible for our daughter, instead of what would most thrill our son. I am ashamed to say that I made excuses not to sign Jack up for soccer last year because it was a sport Caitlin has always wanted to play but couldn’t, and because I didn’t know if I could handle the practice schedule in addition to her medical appointment schedule.
But…. As is the case with most aspects of this disease – there are plenty of silver lining gifts that have come from this situation. Jack is one of the most empathetic children I have ever known. His teachers often tell me that he is the first to the side of a crying child. He is also the most likely to imagine aloud why a person might be acting sad, or angry…. And he often imagines things that don’t show on the surface. Just because a person doesn’t wear a cast or a bandage, doesn’t mean they aren’t in pain. Jack understands that equal treatment isn’t always fair, and that sometimes we need something different to give us a fair shot….. Jack has always been more patient than most kids his age. He is an anomaly that way – a bundle of energy; he literally leaps and skips instead of walks. But he can also sit for hours working a puzzle or drawing… practiced over the time that he sat beside his sister when she wasn’t well. He also spent lots of time with word and letter games, and listening to his sister read (an activity that would let mom cook dinner). Consequently, he’s a phenomenal reader and writer, which is an added blessing when he zips through homework quickly each night.
I am learning to balance all the time. Balance work and play. Balance the fighting for the future with the peace of just having a decent day. And balancing the needs of ALL my children, whether sick or healthy. I know that Arthritis hurts siblings too…. And I do my best to help Jack address his own feelings of frustration and sorrow. He knows that what affects one in our family, affects us all. But we all have our own dreams, and we all deal with our own challenges….So, Jack played soccer this season, even though Caitlin still can’t. And he was so happy – and we all enjoyed those times in the park together.
There are so many times that Jack’s energy and enthusiasm for life has pulled us away from the quicksand of despair! Just like I can’t ever know what Caitlin’s life would have been like without meeting arthritis, I can never know what Jack’s life would have been if he didn’t learn the compromise, nurturing, camaraderie and care than comes when a sibling has a chronic illness. As wonderful as my sweet boy is, I can’t say that I would ever want to.
Happy Birthday Sweet Boy.