Thursday, December 11, 2008

Fear

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.)

10 comments:

Carey said...

I covered my eyes and zipped right down to the comment field. Sorry. Can't read this. Can't read George's either.

Penny said...

Carey,
I totally understand.

Lee Ann Thill said...

I wish I hadn't clicked that Dead in the Bed link.

For what it's worth, I developed retinopathy about 10 years ago, which would have been around my 20th D-anniversary. I had laser treatments and a vitrectomy, and my vision isn't noticeably different from what it had been. Of all the complications, as long as he gets regular dilated exams, and follows up if any problems develop, it's a pretty slim chance that he'll have disabling vision problems. The technology and procedures they have now are getting closer to precluding blindness as long as he follows up on care. My issues were scary at the time, but they turned out to be a minor blip in the grand scheme of things with no lasting impact other than some unpleasant memories. I never imagined a better outcome than that.

I'm sad to see you getting as stressed out over all this as you've been - not that I don't get it though since we've all been there. I just keep hoping you'll work through these emotions soon since it seems like you're in a funk. I hope you're doing something good to nurture yourself.

Lyrehca said...

Ditto to what Lee Ann said.

I have retinopathy, and had laser treatment twice (about 29 years after diagnosis). While I freaked out at the time, it has turned out to be a minor blip. My vision hasn't changed at all, and it's always been 20-20 or better. People compliment me because I don't wear glasses. I have more eye doctor's appointments than most people my age, and that is probably what will happen if your son develops a diabetes-related eye problem. That's IF and not WHEN.

And your son was diagnosed relatively recently, and lives with carb counting, insulin ratios, insulin pumps, and perhaps a CGMS either now or in the future. Such tools make it less likely that a complication will occur, or else make it easier to manage complications from getting worse.

type1mom said...

This post could have been written from my exact thoughts Penny. My first thought every morning is to wonder how Maddison is, even though she was just checked at 3am or so. I think about Maddison's numbers MANY times a day. Wondering if I am doing my best, wondering about everything to come in her life. We are on the same page me and you!

After 2 yrs I am just finding some comfort in knowing someone else can care for her too! I don't like it, but they can. She just started going to her friends house from school that lives two blocks away. That was a huge step for me, after two years. I'm glad I'm "normal" with my "irrational" fears.

Highs do motivate us, because we know we must defeat them, bring on the mommy bear! At this point I still refuse to read much about complications....I know I would be be too much of a mess at times like recent when Maddison has been running high alot.

I think since I have a father with every complication makes me more concerned with highs than alot of parents that have the attitude of "fix it and move on" I'm simply not able to do that. Although my father never checked his blood sugar, was never very compliant and was lacking education I still know that todays advancements will give our children better health than ever before. Soon the studies will show the benefits and we will be smiling all the way.

((HUGS))

George said...

I know my fears are shared by many but I never think about my mothers fears until last night when my mother called me crying because of my post.

Thank you for your honesty Penny. If you didn't worry then you would be a good mom. Thank you for being so great.

Penny said...

Lee Ann,
I don't think I'm stressed out or in a funk. This blog is my outlet. I let out the pain and the frustrations here so they don't inundate my life. Like I said, these fears are there but they do not rule my life. I don't conciously think that Riley might die every night when he goes to sleep. But, the fear is there. Does that even make sense? Anyway, thank you for your concern .

Lee Ann and Lyrecha,
Thank you for sharing your experiences with your own retinopathy.

T1Mom,
I'm glad to know that someone else understands my craziness.

George,
Send a (((big hug))) to your mom from me.

Randee said...

All I can add is that with the tight control you strive for with your son, the odds of the complications go down so very much. I've been T1 for over 17 years (diagnosed at 10) & have no complications .... It IS possible to go beyond what's in the statistics (although I know the fear they cause)& that is what gives me hope.
Take Care.

Shannon said...

OH MY! With diabetes being so new in my life I couldn't NOT read all this. I have so much to learn, but I fear so much too! I stress everymorning as well as I walk down the hall to my daughter's room. I fear that something goes terribly wrong in the night. Now I know why I feel that way.

Thank you for sharing your list. It was an eye opener.

Anonymous said...

These fears are legitimate and healthy, however I can't help but think "We can't let fear run our lives." I often let fear hold me back from success by fearing failure. I'm not sure if anyone else on here has felt this way also, but I wanted to share a powerful resource I've been using to trump my fear.

Here's the site for the blog I've been following: www.johnassaraf.com/blog/. And here's the site for the product I've been using: www.johnassaraf.com/hia. Let me know what you all think.