LifeAfterDx--Diabetes Uncensored

A internet journal from one of the first T1 Diabetics to use continuous glucose monitoring. Copyright 2005, 2006, 2007, 2008, 2009, 2010, 2011, 2012, 2013, 2014, 2015, 2016

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Location: New Mexico, United States

Hi! I’m William “Lee” Dubois (called either Wil or Lee, depending what part of the internet you’re on). I’m a diabetes columnist and the author of four books about diabetes that have collectively won 16 national and international book awards. (Hey, if you can’t brag about yourself on your own blog, where can you??) I have the great good fortune to pen the edgy Dear Abby-style advice column every Saturday at Diabetes Mine; write the Diabetes Simplified column for dLife; and am one of the ShareCare diabetes experts. My work also appears in Diabetic Living and Diabetes Self-Management magazines. In addition to writing, I’ve spent the last half-dozen years running the diabetes education program for a rural non-profit clinic in the mountains of New Mexico. Don’t worry, I’ll get some rest after the cure. LifeAfterDx is my personal home base, where I get to say what and how I feel about diabetes and… you know… life, free from the red pens of editors (all of whom I adore, of course!).

Thursday, October 25, 2007

The worst job in the world

I’ve always had a hunch that the worst job in the world would be being the mother of a Type-1 kid. Now I have definitive proof of that.

It happened at our Type 3 group meeting. The recently retired mother of a healthy, full grown Type-1 was talking about her feelings, still raw after thirty years. “I felt so…..Guilty” she told the group.

Why, I asked.

“Well, I gave it to him,” she said.

That’s ridiculous, I told her. He didn’t get diabetes from eating too many Three Musketeer’s bars. It was in his genes.

“Yes, but they were my genes!”

Wow. I was stunned. I knew how scary it is for Mom’s of young T-1s. Constant worry as they try to guide their children down the tight-rope between hypos and DKA. Dealing with idiot school officials. On the pone all the time checking sugars and making decisions about insulin. Sleepless nights.

It had never occurred to me before that a mother might feel personal responsibility for the genes she passed on to her child. What a burden of unnecessary guilt to carry for 30 years.

But I’ll bet this is one hell of a lot more common that any of us would dare to guess.

I think we need a second, special mother’s day for those ladies who have the worst job in the world. On D-day this November I want all of you to send a special card to all the Moms of T-1s you know. They need to know we love them for all they do, and none of us blames our Mom’s for “giving” us diabetes.

9 Comments:

Anonymous Amalas said...

I didn't get diagnosed until I was already in college, so my mom didn't have as much oversight as those who were diagnosed as a kid. However, I think it is definitely a good idea to thank our parents for helping us, and supporting us, no matter when we were diagnosed.

7:15 AM  
Blogger Allison said...

Well, that's not entirely true. There is much more to it than just genetics. If that was the case, then twins would always get type 1 diabetes, or even close siblings. Fathers *with* diabetes only have a 7% chance of passing it on, and mothers only have a 4% chance. Imagine what the odds are if you don't even have it! There is an element of genetics to type 1 diabetes, because obviously, there are cases where children and siblings are diagnosed. But because all of them are, there are probably environmental factors that trigger the immune system just as much as being in the same family. I am the only type 1 diabetic in my family. My mother's father and my father's aunt both have type 2 diabetes, but no one else has type 1. So I don't think it's a good idea to get caught up in thinking that genetics is the cause.

7:53 AM  
Blogger Penny said...

Wil,

This post brought tears to my eyes. I've often wondered about when Riley is grown and on his own if it will still hurt as badly. I guess I have my answer. Your child is still your child no matter their age.

And, Allison, while genes are not the only factor it obviously plays a roll. It plays enough of a role that I feel some guilt about it myself, that if it wasn't for me Riley wouldn't have this disease. And, enough that my husband and I have seen to it that we will not pass our genes on to any other children.

And, even if genes do not play that big of a roll, it still something that bothered this mom. That's what is really important.

1:33 PM  
Blogger Mary C. said...

I'm the mom of a 10 year old T1 daughter who also has Celiac disease and autoimmune thyroid disease. All of these are linked genetically but are triggered environmentally. Because I selected a sperm donor to create her, I am fully responsible for her genes and as a mom, I have a significant influence on her environment. But I don't feel guilty about how she turned out. She is a happy, healthy, well adjusted child.

Years ago I tossed any guilty feelings I had on the rubbish pile where they belonged. I realized that if she didn't have the exact genetic makeup that she received at conception, she might be a healthy, non-diabetic child but she wouldn't be the same child. She (or he) would not have the same twinkling eyes, wry wit, quick smile or silly giggle. Without diabetes, I doubt if we would be so closely bonded as we are now. I might even take her for granted, not knowing how easily I might lose her. I might forget to give her a morning kiss each day and another at bedtime. I refuse to dwell on the dark possibilities and instead work with her to create bright ones.

I know that as she matures, she will move out on her own but our bond will not be broken. She will have all the tools that I've taught her to see her through the highs and lows of diabetes and of life.

Make no mistake, I wish with all my heart that there will be a cure someday. But I will never regret the genes that gave her diabetes because without them, she wouldn't be the child that I love more than life itself.

5:03 PM  
Blogger Mary C. said...

Oh, and although the job is difficult, I wouldn't trade it for the world!

5:17 PM  
Blogger Kelsey said...

It's funny because a mother's genes (or a father's) obviously do much more than "give" someone diabetes... they give us life!

For a parent to feel guilty about passing on their "diabetes" gene is kinda like feeling guilty for giving your child red hair, an outgoing personality, blue eyes... basically for giving them life.

I think all diabetics would agree that living with diabetes is certainly preferable to having no life at all!

5:17 PM  
Anonymous Kathleen Weaver said...

You forget the occasional study that claims it's caused by something done or not during early childhood.

6:07 PM  
Anonymous Kelly said...

Ok ... I feel bad but not guilty...Mine is adopted. The birthfather has T-1, and the birthmother's father and aunt have type 1. The chance of those recessive(?) genes getting together has to be what...500 to one, a million to one?? None of the half brothers or sisters has it. After I read about a Swiss study on formula fed babies getting D, I thought what if he had gotten human milk instead of formula...but wait, many kids had formula and did not get D. I'm still his parent and live D with him.It is not a nice job, but it is an important job. There are days I hate it , and other days it seems normal.

10:03 PM  
Anonymous Anonymous said...

From behind a tear-stained face - Thank you for appreciating us and thinking of us.

Although unfounded - the guilt is enormous.

And the job is exhausting.

And anybody that hasn’t walked our shoes could ever understand what it is like to be “on” like this 24/7/365. No vacation – ever.

Even when our kids are not with us we are doing the math – when did they eat – when did they get insulin – how much – what is their blood sugar – are they going up or are they going down?

And then there are the questions – will they be okay – will their teacher notice a low – should I call someone – am I doing everything possible to keep her as healthy as possible?

And I can’t even let the thought of the complications into my head – I can’t – It would destroy me – and I need to be at the top of my game for her. So I bury my head in the sand. And medication for mommy helps.

And the smiles, the giggles, the songs, the hugs, the happy healthy little girl that has no idea how hard her mommy and daddy are working on all this diabetes stuff makes it all worthwhile – but it just adds salt to the wound. It’s so unfair. It shouldn't be this hard.

And she is such a trooper. She takes all the finger pokes, infusions sets for her insulin pump, and now another infusion set for her continuous glucose monitor in stride. She says “ouch” she cries sometimes – but she does it. And she is so patient with us – she always checks with Mommy & Daddy before she eats something - she waits while we measure, weigh and calculate her food – and she stands still while we work on the pump or review the numbers from the CGM. And she doesn’t seem too worse for the wear.

So I do all my crying in private.

Thank you for the blog, the recognition, and for thinking of us - I for one really appreciate it!

9:36 AM  

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