This post is about a recurring fear that goes through my mind.  It is something that I think of often, but may not be entirely justified.  If you, or someone you know, is actually living the part of the person I fear becoming, please don’t let this post scare or discourage you.  You are incredible, and your dedication to your children is inspirational.  I may need to lean on you for support someday.

* * *

“Daddy!  Daddy!” came the call from my 5 1/2 year-old-son’s room (we’ll call him “Jay”) last night, at 1:30 in the morning.  “I’m thirsty, can you get me a drink of water?”

He chugged his cup of water, and went back to sleep.  Meanwhile, I lied awake in bed for an hour, worrying about just why he was so thirsty.

As it turned out, he was just thirsty.

* * *

A week ago, Jay was at his hockey clinic.  He had been struggling with some of the drills and came off the ice crying.  After the hysterics settled, and his words turned into something intelligible, he explained “I’m out of energy” in his trademark dramatic manner.  We sat down in the locker room for awhile, I explained to him how he doesn’t have to be the best at playing hockey, he just needs to try his best.  Eventually, he went back on the ice, and after 15 seconds, he fell down and came to me in hysterics again.  He gave me every excuse in the book – the session is too long; the drills are too hard; he likes the other rink; he’s tired.  (Never mind that he’s done this seven times before without a problem).  After realizing it was futile, and perhaps cruel to have him finish the lesson, he changed back into his regular clothes and we got in the car to head home, all the while he said he was too tired.  Oddly, he’d had a very good night’s sleep the night before.

As it turned out, he really was just tired.

* * *

A week before that, my parents were over for a visit.  My son kept going to the bathroom to pee every 15 minutes.  “You know, that’s how it started with you,” my mother told me — as if the thought hadn’t already been going through my mind a thousand times already.  I know the signs, and I can’t help but look out for them.

As it turned out, he really just needed to poop (and didn’t want to).

* * *

On the drive home from that hockey clinic, he fell asleep in the back seat.  Thoughts were racing through my mind.  While driving on the highway, I debated pulling over to test his blood sugar, just so I would know.  That might put my mind at ease, and if I saw a value between 80 and 120 I’d know that it’s just fatigue.

But I couldn’t do it.  I wasn’t mentally prepared to see the result.  What would I do if I saw a really high number?  Detour to the hospital?  Call my wife?  Call the pediatrician?  Cry?  Which one would I do first?  And what if I saw a number like 150 or 170 mg/dl.  What would that even mean?

If Jay had diabetes, I would  probably be – intellectually – well-equipped to handle it.  I know all about carbs, insulin, DKA, and all that other baggage that comes along with it.  Certainly, I’d know more going into it than my parents knew when I was diagnosed.  But could I handle it emotionally? physically?  How would I explain to this good little boy who did nothing wrong that he has to deal with diabetes just like his dad?

The feelings of guilt would be overwhelming.  The kid is only five and a half years old, he’s too young for this (I was diagnosed at seven)!  My wife would be crushed, because her son had to endure all of these complexities, and it would all be her husband’s (my) fault.  I would wonder if I made the wrong choice even bringing kids in to this world knowing the risk that I might pass this thing along.

I think about the blog post, with a picture of a meter displaying a really high number, along with a caption “this number isn’t mine.”  I know I’d get all kinds of support from the DOC; everyone would remind me that You Can Do This, and I’d pretend to put on a happy face.  I’d be reminded of other parents who do this, and the books that Leighann and Scott have written about it.  I’m already in awe of these parents of kids with diabetes, and if I were to join their group, I’d probably be in awe even more so.

Having diabetes is hard.  Having a child (or children) with diabetes is harder.  Thinking that I gave diabetes to my child would feel devastating.

It’s my biggest fear.  Bigger than DKA, bigger than any complication, even bigger than not being able to take care of my kids.  I preach all the time that “it’s not that bad” and “you can live with it”, and I truly believe that — I like to think that I’m doing pretty well and leading a reasonably happy life.  But it’s easier to hold  a burden myself than to hand it to my children.  Given the choice, I’d face adversity times out of ten, rather than through an obstacle in their life’s path.

Although Jay has come through all of these events just fine, I recognize the possibility is still very real.  And even if his pancreas never stops working, the possibility will always linger in my mind every time he is excessively thirsty, tired, or using the bathroom.  Somehow, I need to prepare myself mentally for that, because when I do decide to test his blood glucose, I don’t want to stop and think about what the number means.  I have to be ready.

Posted on July 30, 2012, in Diabetes and tagged , , . Bookmark the permalink. 12 Comments.

  1. I can so totally relate to being scared of this. In fact, I choose not to think about it, and didn’t even read your whole post b/c of it. (I skimmed.) I can’t let these thoughts enter my mind or I’d go crazy. I was 3 when I was diagnosed. The Kid is 3 now…


    • It’s crazy how we tend to fit our own diagnosis ages into the probability equation. I keep telling myself that I was diagnosed at 7, so my kid’s got a couple of “free” years to go before he needs to worry about it. I also think that if he makes it D-free to 8, he’s in the clear. The practical side of me tells me that thinking is absurd (it is), but the thoughts still linger.


  2. Oh Scott, what a heartfelt post. Thank you for your honesty. All I can say is that you will have a world of support if it happens. There are so many of us, as Moms and Dads, who have lived through it. You will too.


  3. I know you already know this .. but you are not the first parent to feel this way. I do the same thing every time my son asks to get out of bed to get one more drink of water. Yes, I know he’s just playing the “let’s stall bedtime” game… but in the back of my mind I always wonder. And when he’s more tired than usual.. Or grumpier than usual… And I also mentally track how many times he’s going to the bathroom. All we can do is hope that we never pass down those particular genes to our kiddos. But if God forbid we do… at least like you said, we’d be way more prepared (mentally, if not emotionally) than our parents were.


    • Within minutes after posting this, my wife called me to say my son wasn’t feeling well and he’s being sent home from camp. Of course, the thoughts, still fresh in my mind from writing this, were going crazy. He had a headache… he was incredibly tired… (But he wasn’t drinking or peeing a lot, that’s a good sign, right?).

      Since he felt so lousy, my wife gave him a “comfort food” snack of chocolate cake and apple juice. I didn’t tell her my own concerns, but figured that would be a good blood-free test. So far, so good. I just wish here would be an age when I could stop worrying. It was easier when it was called “Juvenile” Diabetes and we (thought we) knew there was an age at which it was no longer a risk.


  4. lovehatediabetes

    I’m not looking forward to this part in my life — when I have kids. I was 15 when I was diagnosed. I look at it this way, I’m glad I’m still alive and on this Earth, even though I am T1D. I’d rather be here with it than not here at all 🙂


    • Don’t look forward to the worrying about kids, but please DO look forward to kids. I can’t explain how wonderful and how much joy it is to see your little one grow, learn new things, and gaze in your eyes with that look of complete trust and security. It’s something I can’t describe; it must be experienced.


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