By: Brendan Connell
As parents, we often tell ourselves lies when it comes to our children. “My kid would never do that.” “It’s OK that my kid doesn’t do that yet.” I am very guilty of this when it comes to Kelsey.
For the entirety of our relationship, I have always been the optimist and Jen has always been the realist. The opposing sides have always worked for us. It’s one of the things that has made our relationship so strong. It’s also what has caused us problems and created tension when it comes to Kelsey.
I always try to say that everything will be alright. When she says her legs hurt or she’s overtired, I make excuses. I say it’s not a big deal. It will be fine.
The reality is that I tell these “lies” to try and help calm Jen’s fears, but to also help myself ignore the reality that is Kelsey’s illness. Focusing on the reality for me would be debilitating.
The reality for Kelsey is that her disease has many unknowns. What is known is that it can be incredibly dangerous. This is one of the things I often try to ‘lie” to myself about. It’s simply easier that way.
The happenings of this past week make it impossible to lie to myself, though. I did try, believe me. When Kelsey complained of leg pain, the “lie” was that the pain was caused by the heeled boots she wore for picture day.
Kelsey certainly made it easier to “lie” to myself when she walked around Storybook Land for hours, likely in excruciating pain, the next day. That night, however, the complaints, inability to walk, and marks were back with a vengeance. I was say, “Everything will be fine.”
The next day wasn’t fine, though. We rushed to the hospital.
The nurses and doctors helped feed into my lie by saying her blood work looked good. They sent us home after six hours of observation. I continued the lie and liked the look of the next day, too. I kept saying, “Everything will be fine.”
The next day, Kelsey’s body made it impossible to lie to myself. It appears that Kelsey took on my worst trait and lied to herself all day. She walked through and endured the pain all day long. but she could not hide it anymore. She collapsed. Her body showed that it was rebelling against itself because of her PAN. Her legs were so inflamed and bruised that Jen called me almost unable to speak from fear. She was ready to call 9-1-1 because Kelsey was so warm, lethargic, and full of marks all over. It was unlike anything we had ever experienced. Time was of the essence.
Three days and many tests later, we were all left lifeless. I could no longer lie to myself. Everything was not alright and will not be until we find a cure. Kelsey will always be at risk for organ failure, stroke, or worse.
So here we are, almost 5 years since we first found our way to DuPont Hospital with Kelsey. We certainly know more than we did then. Though it is not much more.
I still find comfort, as I did then, in lying to myself and saying everything will be alright.
I hope and pray that it will.
We can not do it alone. Please join us in these prayers and on November 25 for a night of cocktails, awareness, and hope. Please click on the link to purchase tickets if you have not already done so. We will be raffling a signed jersey from a Chicago Cub playing in game 7 of World Series today, among many wonderful prizes. Hope to see you there!