Sickle Cell Disease (SCD) an Field Days

Sickle Cell Disease on Field Days

by Kevin Bentch, PhD

Emmanuel, our son, wanted to go to the annual church field day a few weeks ago. He had been looking forward to this for a while. The event began on Friday afternoon and ran until Saturday afternoon, located at the Circle J Ranch in Ten Sleep Wyoming. My bride and I decided we should all go, and let Emmanuel have some fun. There was some worry and concern, since he had just gotten over a prolonged bout of sickle cell disease (SCD) pain. When we arrived, we enjoyed the picturesque nature of Circle J. A noisy river, swollen with snow runoff from the Big Horn mountains in the east, runs through the ranch. Several other children were waiting there, eager for Emmanuel to join in play.

 

Like most other youth, Emmanuel wanted to run, and play until exhaustion, ignoring the menacing heat and low humidity to the best of his ability. About an hour into the play time, he needed to lie down. After resting, he returned to playing. Late in the afternoon he crashed for the night, going to bed early and sleeping like a rock.

 

I worried as I watched over him, considering how he barely moved as he slept, as if strength and energy were at a low ebb. Throughout the outing I was torn between wanting to let him act like a normal preteen and wanting to protect him from the likely repercussions from SCD. 

 

The next morning when he got up, he went to find the other children. They joined together for a fun breakfast in the lodge. Although his physical appearance looked pretty good, he wasn’t moving too quickly. I refrained from asking him what was hurting; that question bothers him a bit, possibly bringing a problematic focus on whatever is actually hurting. I tried to not be caught watching him so closely. But I was watching closely!

 

He found quiet things to do while interacting with his friends for about two hours… and then he hit the sack again until we left. 

 

Now that Emmanuel is getting his man size, voice, and determination, he is much more in control of his own health - and his destiny. Not sure how much he liked it that I insisted on making sure he had plenty of water to drink and good meals as much as I could.

 

I know I need to let go, and allow Emmanuel to explore and find his own limitations… be more on his own. I have been working on that. What I really want is to just cuddle him up and sing to him in the rocking chair. Those days are long gone.

 

I have read about how some SCD teen kids will intentionally cause health issues as a means of rebellion or to bring hardship on their parents or caregivers. Sometimes they will stop drinking water to bring on a crisis or stop taking their medication so they become ill. Such scenarios may cause them to wind up in the hospital or worse. I hope we can sidestep that sort of thing!

 

I will be working hard, as my bride advised, to deal with emotions beforehand so I can make well-considered decisions when dealing with future changes. The next few years will pass at least as quickly as these first thirteen; that is hard to believe. Long before we are ready, Emmanuel will begin the biggest field day of his life - moving out on his own. We raised our other children to fly, and fly well, from the nest. Why is it so hard with Emmanuel? Maybe it’s because he’s our last child. Or maybe it’s because he came equipped with some substantial medical challenges. I must learn to clarify my feelings and let Emmanuel grow up to that wonderful full mature grownup that is on the near horizon.

 

Emmanuel was very tired on Sunday and stayed mostly in bed, with significant pain in his ankles and knees. He managed to stay hydrated, which was helpful. The next day, he was only about halfway back to normal. It took three days for him to get pretty much back to his normal routines.

 

Was the decision to go on an extended outing like that a sensible one? Regarding Emmanuel’s physical health, it’s hard to tell, although he certainly pushed himself. Maybe it will help build some endurance.

 

Pertaining to mental health, however, I am confident that it was the right move. Emmanuel’s strong desire to participate in activities with his friends was a huge motivating factor for him.

Since then, he also went on the Wyoming Outdoor Field Day, from where the picture is from. Am so glad for the normal things he gets to do in-between troubles!

 

If we were keeping score, I’d say our son keeps coming out ahead of SCD for these times, and for that, I’m thankful.

(Pictures from Top to bottom: 1) Wyoming Outdoor Day at Medicine Lodge, 2) Reading Magazines at the Local Grocery Store - Blairs - in his Onesie, 3) Dressed in Flight Suit at iFly in Denver, 4) Sitting with friends at the Church outing day, 5) Coming Home from our visit to the Denver Children's Hospital - with his new Bike in the background)