What GSD Families Wish You Knew….

What GSD Families Wish You Knew….

Sometimes it hard to explain GSD and to put into words how it affects our daily lives.

This is an excerpt from GSD Awareness Week Last Year by a fellow GSD Mom & Friend, Kemi Sutton, I couldn’t have said it better myself.

This is what we wish you knew…

SuttonFam

“This is not a “silly, made-up disease”. We are not looking for attention. Just because you’ve never heard of it, or known anyone who has it, doesn’t make it less real. When you tease my daughter about taking her dose of “sugar, or is it flour? cinnamon? yeast? ” you make her feel embarrassed and self-conscious. Teasing her about it isn’t endearing; it makes you look like an ass.


Yes, Alex was diagnosed 12 years ago. Yes, that’s a long time. What you need to understand is this: we’ve only been doing cornstarch for a year. We’ve only been doing a special diet for a month. I thought I was well-educated about GSD. I was wrong. The scariest part is, even with my limited knowledge, I still know more about it than most medical professionals. That’s how rare GSD is. (If I had a dollar for every time a DOCTOR sat down across from me and said, “So, GSD… what is that, exactly?”, we would be able to fly our private jet to our vacation homes in Maui, Sydney, and Geneva.)

I am tired. I might look angry at times, but I’m not. I’m just tired. So, SO tired. Tired physically, tired mentally, tired emotionally. T-I-R-E-D. 

There is no more “spontaneous”. I live by the clock. (Or, more accurately, by the alarms I have set on my phone.) Activities have to be planned around cornstarch doses. I can’t just grab a diaper and some wipes and be out the door the way I used to. Last-minute invitations cause me tons of stress and anxiety. I need time to plan and pack and create a GSD strategy. 

I am lonely. I don’t go very many places anymore (see above). I miss being social, but I haven’t figured out how to work around GSD yet. Please don’t assume I no longer want to be friends with you. I need you like a fat kid needs cake.

To you, what might look like a major tantrum by my 2-year-old is probably an episode of low blood sugar. You sit behind me at church, or stand behind me at the grocery store, or eat at the table next to ours and tsk-tsk your disapproval when I start cramming Smarties into his mouth. You think I am rewarding him for misbehaving. There is the possibility that he is just being a normal 2-year-old, but more often than not, it’s hypoglycemia. The one time I took him out of a church meeting without grabbing the diaper bag, he screamed for close to an hour before I realized he was low and not just throwing an epic fit. I had to carry my screaming, thrashing toddler back into the chapel mid-service in order to grab my dextrose stash. After two packages of Smarties, his blood sugar was still only 56. That experience was deeply traumatic. Now I prefer to err on the side of caution.

I may forget to pack diapers or wipes, but I never leave home without Smarties. NEVER.

We are often late. I hate being late. I strive to be early, but this disease throws a lot of curveballs. I have no way of knowing who will wake up with low blood sugar or high ketones, or who will dump cornstarch down the front of their shirt moments before we need to walk out the door. If I am late, please know that it is for an important reason. This also applies to canceling plans at the very last minute. It’s not you; it’s me.

GSD is not the same as diabetes. There are similarities in diet (for our type, anyway) but my kids are way more restricted in what they eat than my husband, who is a Type II diabetic. No, they can’t have that sucker. Yes, I know it’s small, but even Dum-Dums are forbidden. I know it seems like I am being ridiculous when I say they can’t have donuts or cookies or ice cream, especially when they ate them last month. It’s just that things have changed. I know better now. They are working so hard to follow this diet plan. Please don’t take offense if they turn down your treats.

When my kids get sick, it’s a big deal. Minor colds turn into bronchitis. A stomach bug can land us in the hospital. 

I try not to coddle my kids too much, but their bodies do have limits, and they are usually less than other kids their age. When Alex goes on an overnight campout, it takes him three days to recover. If he chooses not to participate in a backpacking trip, it’s because he knows it’s beyond what he can do. Trust that he knows his body better than anyone else. Teasing him about “wimping out” makes him resent you, and he’ll be less likely to participate in the next activity.

I’m sorry about our yard. I know it looks terrible, and I’m embarrassed. I just had to let it go. I can’t do it all. (I can barely manage to do some.)

I have good kids. I’m not just saying that because they’re mine. They truly are good. They didn’t ask for any of this, but they have accepted it and thrive in spite of it. If you treat them well, we will be loyal to you forever.” -Kemi Sutton