It has taken several weeks for me to work up the courage to write this post. This is a very personal post, and it somehow seems fitting that as we celebrate all of our Type 1 Tough Athletes with such vigor – we also do something to raise awareness. And that we do so with honesty, revealing the very personal, very hard, very heartbreaking, extremely stressful aspects of this autoimmune disease as it feels to those of us living through it.
Type 1 affects entire FAMILIES. And y’all….it is HARD! It can be so, so hard.
So here goes.
We have a 15 year old daughter, diagnosed with Type 1 several years ago. An amazing young woman, and athlete, and student, and a fighter who competes against everything in this world -including her Type 1. Her personality serves her well for this disease, and I believe that God did not give her anything she cannot handle.
Even so, we had had scary moments. We have lived through seizures, and highs and IV fluid bags and Glucagon shots, and she has had a very few moments where this unpredictable, hard to manage illness has gotten in her way.
As a sophomore on her High School softball team – a team that last year only won 8 games – they had a wonderful season thisyear. As the season was coming to an end, and sectionals were starting – all she wanted to do was make it to the Georgia State High School Tournament in Columbus. She was wide eyed, and anxious and excited about making the Elite 8. But they had a few rounds to go.
One evening, we were chatting about Columbus and going to State, her hopeful and bubbly. We discussed the team that they would play the following week – were looking at stats online as it was a team we had never played, and she was just wondering (hoping) that her and her team would beat them. This was at the point in the season when you lose one game, or one series and your season is over.
As we were talking, I said the “The good thing is, you are only a sophomore and if you don’t make it this year you will have two more years to get there!”
Her response was one that sort of stopped me in my tracks, that smacked me across the face and knocked the wind out of me.
“Yeah, if I’m here,” she said.
And then she walked off.
That conversation was open and closed and she had nothing more to say.
I wanted to pretend I didn’t know what she meant. I wanted to pretend that she didn’t really say that to me. I wanted to cry, and I wanted to somehow walk after her and tell her that she shouldn’t say things like that, that she can’t think like that.
It shocked me, because if you were to know this kid, you wouldn’t think she is afraid of anything. Nothing is too big or too hard for her. She doesn’t back down from a challenge and she has never shown a hint of weakness, a hint of fear…. And maybe this was not a display of fear, but one of reality. Because that thought IS a reality for every person living with Type 1, and every family member who loves them.
While other kids are worried about playing time, or involved in drama, or think they have problems because they aren’t allowed to go to the football game – these kids are dealing with a life that doesn’t always feel so secure.
While some parents are freaking out about a coach, or complaining about things that seem so trivial, a parent of a kid with Type 1, is just so freaking happy that their child is able to play that day. And that their blood sugars are good and stable. And that they are there on the field!
They are dealing with a REAL concern, that one day – out of the blue, a seizure or a coma could sneak up on them while they sleep, and they might not wake up? And as much as every family of a T1D tries to put these things out of their mind, the reality is that somewhere – in the back – that fear will always be.
It’s just not enough to say that these kids are brave and strong. It’s not enough to celebrate them one month out of the year. It’s not enough to show pictures of them wearing their pumps and exposing their needles and blood. We need some sort of cure.
I would not personally wish my perspective on my worst enemy… And every single night of my life, I go to sleep and pray that my child wakes up in the morning and that something doesn’t happen during her sleep. Last week we had a pump error while she was sleeping that sent her to the hospital. A few months ago it was a seizure at 6am where she fell and hit her head.
And a few weeks ago, during a normal conversation, it was the realization that a innocent part of childhood has been taken from her and that while maybe not often, she does realize that the future is uncertain.
And yet – these kids WARRIOR on anyways. Often harder and with more integrity and with more passion than those who have a much easier life.
Big thanks to West Georgia Woman Magazine for featuring our daughter in their November issue. You can read more about her here.