There’s a fine line between hope and fear, fantasy and reality, worry and obsession when you have a child with chronic illness. Keeping your feelings in check, and your perspective clear can feel like walking a tightrope. Swaying just a bit to one side or the other can throw off the balance, and that can spell disaster.
Yesterday, we talked about the importance of hope and winning over worry, but TOO much faith and hope can cause you to put on the blinders and avoid seeing the entire (perhaps unpleasant) situation.
Take our recent bout of the stomach flu for example.
My son had a VERY good week on the mew medication- the one that is unproven in children, the one that warns of possible serious side effects including tears or ruptures in the digestive tract. It is a fast acting drug, so we knew that side effects could come on quickly as well. By the end of the week, he was doubled over with stomach pain, barely able to move, and that was just one of the issues he was having. I HOPED it was just a stomach bug, but that little voice inside my head told me to be careful, not to wish so hard that I would overlook a potentially serious issue. I couldn’t let my “positive thinking” color my judgement, or let myself just “will” it away. It was the middle of the night, so going to the doc wasn’t an option, and he wasn’t really bad enough for a trip to the ER, so I walked that fine line. I watched him closely for the rest of the night, hoping that it was just a virus (we had been to a ton of clinics over the last week, so his picking something up was a real possibility) but also watching for any other indication that things were getting worse, or that it could be the more serious, medication related side effect. I kept neutral, balancing the hope and dread, waiting for the answer to be revealed. I didn’t jump to conclusions, but I recognized the possibility. Its a very, very fine line.
It was just a stomach flu. We were all relieved, and glad that I didn’t overreact or read too much into the situation. My son could relax and leave the worry to me, since he knew that I WAS watching him for any sudden changes, and that I wasn’t overlooking the potential for something more serious to crop up. I was the tightrope walker that day so he didn’t have to be, but I can’t always do it for him.
The longer we have lived with this disease as a family, the more I realize that it requires us to walk a number of “fine lines,” and while I may be walking mine, I am coaching my son to walk his.
I’m helping my son find his balance between hopes and reality, between dreams and plans. Juvenile arthritis plays a big role in this. He walks his own “fine lines” while planning for his future. We know he could never serve in the armed forces because his condition is a physical exemption. Dreaming of becoming an air force pilot would be a pipe dream, so I don’t encourage anything that we know is completely outside the realm of possibility. What about his dream to play in the NFL though? Well, there’s a fine line.
He managed to earn a spot on his youth football team the same year he started chemo treatments. Despite the challenges, pure determination along with his God-given talent won out, and he (and his team) made it all the way to the National Championship quarter-finals.
That is a HUGE accomplishment, but it IS youth football. He would love to put all his eggs in this basket, to bank on a career in professional sports, just like his dad. But is that really doable? Do I squash these dreams with a healthy dose of reality? Do I encourage him to pursue it at all costs? There’s that fine line again, for both of us.
One thing that chronic illness has taught us is to be flexible. It’s also taught us to be creative, and look at things from a number of angles. So this is what I have done:
1) I continue to encourage him to train within the limits and stipulations given by his rheumatologist. If he isn’t allowed to play this season, we utilize the extra time for more types and more frequent physical therapy and conditioning sessions, so that he will be ready when he gets the ok.
2) I help him utilize time off by learning more about other aspects of the game. When he is too ill to get out of bed and move around, its a great opportunity to devote (and pass) time reviewing and studying game film. When he is well enough to be up and around, but not play, he can assist the coaches, or even coach the younger kids as he did one season. Learning the game from a coach’s perspective gives him different insights that only benefit him as a player.
3) I encourage him to explore other aspects of the game, like the coaching I mentioned above, but also in other career fields like announcing or broadcasting. His insider knowledge is a huge asset in those areas. He has also obtained student employment through the local youth program as a game official, giving him a better grasp of the rules and how difficult it is to judge and enforce them.
4) We maintain our contacts in the professional sports world, and talk to other people who can help guide him with a dose of reality, from agents to former GMs and other players, on what things he needs to be doing NOW, and what things are less important. Having a relationship with these individuals may also open doors for him later in administration or an ancillary support position if being a player is not in the cards.
5) We recognize how few actually make it into the NFL, but keep in mind that even among the few who do, there are some who made it WITH chronic illness. Jerome Bettis and Ryan Clark are two great examples who my son looks up to, and reminds himself of when he gets discouraged. Outside the NFL, there are many morepro athletes who have battled chronic illness, but still achieved success. Venus Williams, and Phil Mickelson both have forms of autoimmune disease. Shaquille O’Neal, Kristie McPherson, and Olympian Kristen Holzer all have forms of arthritis. It happened for them, it CAN happen for him. Like everyone who aspires to become a pro, chances are slim, but his “disability” doesn’t necessarily rule him out. The others that have come before him are proof of that.
6) We modify his expectations. He recognizes that he may not have the ability to become an o-lineman or d- lineman with his condition. It’s his goal, and he’s not giving up just yet, but he is being realistic. In case that becomes less of a possibility, he is honing his skills on special teams in positions where he has shown talent and enjoys playing. Over the summer, he was lucky enough to get a few long snapping tips and a lesson fromPatrick Mannelly of the Chicago Bears . He has trained with his dad, who was the back up deep snapper for the St. Louis Rams from 1996-1999. And 24 hours after that stomach flu I mentioned earlier? He was out on the field in 8 degree weather attending the elite Rubio Long-Snapping Camp, perfecting his technique over a nine hour day.
WIth this type of determination and commitment, he deserves the chance. I encourage him, I believe in him, I want him to dream and reach for his goals…. but we do it walking a very fine line. We do it with a good dose of reality and number of backup plans. I let him walk the high wire, because HE wants to. I’m just teaching him to make sure there is a safety net.
What have you done to manage the “fine lines” in your journey with Juvenile Arthritis or chronic pediatric illness? We’d love to hear from you!
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