This post was inspired by a post written by George. He spoke about how he worries about having his leg amputated and how he worries he might have a heart attack in his sleep.
Hearing his fears brought mine bubbling up to the surface.
My biggest fear is having one of my children die before me. I pray almost every single day that God does not let either one of my children die before I do. I can't really think of anything worse that could happen to a parent.
Holden is seventeen. My fear for him stems from him being out on the road. I pray for his safety several times a day. Every time I hear his car pull into the driveway, music blaring, I say a silent prayer of thanks.
A parent worries about all of their children. We worry that they'll be safe and we worry that we're not screwing them up too badly.
But, when a chronic disease is brought into the mix, worry and fear take on a whole new dimension.
Early on in Riley's diagnosis I was fearful of a lot of things. I worried about him whenever he was not with me. I worried that he'd go low and no one would know what to do. I worried that I wasn't taking adequate care of him, that I wasn't capable of doing what was needed for him.
I didn't go to the movies for over 2 years after his diagnosis because I was afraid that my cell phone wouldn't pick up in the movie theater and that my mom might need me to ask me something about Riley's sugars and she wouldn't be able to reach me.
Those fears are still there to an extent, but not to the extent that they used to be.
I cried the whole summer before Riley started kindergarten. But, once he got there I realized that he was doing just fine. His teacher did an excellent job taking care of him. I learned to relax a little. I learned that I was not the only one who could take care of Riley and his diabetes.
I relaxed enough to go to the movies. Michael and I even went away for a weekend 2 1/2 years after Riley's diagnosis. I wouldn't do it earlier. I worried about being too far away from him. I worried that he would need me and I wouldn't be readily available.
Those fears have subsided a bit. But, there are still fears that have been there since day one and that are still there. I can't make them go away.
I realize that all of this may seem silly to many of you. You may call them irrational fears. Even if they are irrational, they are still my fears. They don't haunt my every waking moment. But, irrational or not, they are there.
My husband and I check Riley's sugar at least 2 times during the night while he's sleeping. Still, the first thing I do every morning when I get up is walk to Riley's bedroom door and listen for the sound of him breathing. If I can't hear him breathing I go into his room and place my hand on his chest. Once I find him still alive I take a deep breath and say a silent prayer of thanks.
Riley doesn't know I do this. I don't think Michael even knows I do this. But, I've done it every single morning for the last 3+ years. I learned of Dead in Bed Syndrome early on in Riley's diagnosis. And, try as I might, I can't get the thought of the horror of waking up in the morning to find your child dead out of my mind.
I guess maybe some parents of non-D kids might be able to relate to that a little. I think a lot of parents worry about SIDS when their children are babies. But, once they reach their first birthday that fear usually subsides.
I believe I'll have this fear forever.
I also worry about complications. Like I said, it's not an ever-present kind of thing. But, it's a fear that enters in and out of my thoughts, particularly when Riley's sugars have been high for a few days.
When I was doing research for Walk of Hope I came across this statistic: "By 20 years after diagnosis most people with Type 1 diabetes will have some form of complication".
It has haunted me ever since. Riley was diagnosed when he was 3. I can't bear the thought of my son having some complication from this disease by the time he's 23.
Here is another disturbing figure: 24% of type 1 diabetics will develop retinopathy (damage to the nerves in the eye caused by high blood sugars) after 5 years, almost 60% after 10 years and 100% after 20 years.
Again, when Riley's 23....
23, just getting out of college, just really starting life....
Fear can be crippling. But, it can also be motivating.
Sometimes the fear cripples me, sometimes it wins. Sometimes I cry myself to sleep or lock myself in the bathroom and sob because I"m overwhelmed with it all.
But, most of the time my fear motivates me. It motivates me to hold onto my sons a little tighter. It motivates me to log Riley's sugars. It motivates me to teach him a little at a time so that he can one day do all of this on his own.
But, most of all, it motivates me to help find a cure. The only way to get rid of these fears is to get rid of this disease.
That's exactly what I'm trying to do.
(**edit: Go read this post to hear just how real complications can be. While there take time to give Kate and Lance a hug or two.)