The Blame Game

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Recently, we visited Hugh’s classroom for his birthday. While we were there, he had a short time to stand up in front of the class and share some things about himself. He had planned ahead, and brought his special bear Rufus, to show the class. He wanted to talk about diabetes and tell his friends a few things about Rufus (the diabetes bear from JDRF).

 

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Now, I have to tell you, Hugh loves an audience. He delights in being on stage and having all eyes focused on him. He comes alive when there is a crowd, so there was no hesitation as all his little classmates began asking him questions about diabetes. After the first few questions of “Do the shots hurt?” and “Why do you have to check your blood sugar?”, came the inevitable question we always know is coming . . . “How did you get diabetes?”

Hugh knows how to answer this question. We have discussed it many times. “Nobody knows how you get diabetes. Even doctors and scientists don’t know. My pancreas just quit working.” Then from the crowd of little people, someone shouts out “He ate too much sugar.” Hugh’s shoulders slump and he sighs. That’s when Mama jumps in.

“Do you all think that Hugh got diabetes because he ate too much sugar?”

Everyone answers in one loud chorus, “Yes”.

Ouch.

I know this shouldn’t bother me. It is a crowd of 7 year olds, for heavens sake. But as I started gently explaining that it was not because he ate too much sugar, it is just something that happens, I was mad. I was mad that this group of kids could blame Hugh and me for something we could not control. I was mad because I knew I was getting blamed by their parents at home. “Don’t eat that cupcake or you’re going to get diabetes like your friend Hugh.” I was mad because of all the education and awareness I try to spread, Type 1 Diabetes is still a mystery to so many.

But really I was mad because I still blame myself.

It’s silly, I know, to shoulder the blame of Hugh’s diabetes. I’m smart enough to understand what happened to Hugh’s body and that there was nothing we could do to prevent it. My mind knows the facts, my heart tugs in a different direction.

Call it old fashioned Southern guilt (we Southerners are so good at it), or a Mama’s longing for a different outcome for our children, or simply the way I’m hardwired, but there are days I can’t help it.

I ate a honeybun EVERY DAY when I was pregnant with Hugh. And not those small little honeybuns that come in packages of ten. I’m talking about convenience store honeybuns that you only buy on vacation. EVERY DAY. He was really sick when he was born because I developed an infection in labor. I couldn’t nurse him right away and he had to have formula in a bottle.

I let him eat all the icing he wanted off his 1st year birthday cupcakes. When he was two he had his first ICEE and he drank every last sip. We made once a week trips for ice cream . . . I could go on and on.

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Why do we mothers do this to ourselves? And more importantly, why do we do it to each other?

I’m ashamed to admit that when I hear of a child who has died from complications of T!D, I immediately start researching the story. I devour every article, like a hungry man who is getting his first meal in days, until I can find a reason to blame that child’s parents for his/her death. Yes, you read that right, I blame the parents.

Why do I do that? Because I can’t bear the thought of the same thing happening to Hugh. I just can’t. I find something that I can blame the parents for, so I can tell myself that that will never happen to my child.

I do the same thing to those parents that others do to me. I blame them for something they had no control over. I want my life and my story to be different, and if I do everything right and never make a mistake, then Hugh will live a long and healthy life. If I can find out what those parents did wrong, I can save my own child.

I know why you blame me for Hugh’s diabetes. I know why in the back of your mind you think, “I wont’ give my child that extra cookie because I don’t want them to have diabetes like Hugh.” I know why you watch me and try to find something that I did wrong. You want a list of what not to do, so that your child doesn’t end up like Hugh.

I get it. I do the same thing. We all know that Type 1 Diabetes is not caused by eating too much sugar, but there is still the blame.

Friends, can I ask you for a favor? Let’s STOP the blame game. Let’s stop looking at moms whose lives aren’t perfect and children aren’t perfect and quit blaming them for making mistakes to mess it all up. We all make mistakes. There is no playbook for this life. There is no instruction manual on how to save your child from diabetes or cancer or a car accident. Sure, there are good choices that we can make, but that won’t save us from everything.

Let’s STOP looking at people like they deserve bad things happening to them because of their choices. Let’s STOP blaming them for life just happening to them. And let’s STOP feeling like we deserve good things because we have done everything right. We don’t deserve any of this life – good or bad.

And while I’m asking for favors, my friends, can I ask for one more? The next time you hear someone talking about diabetes and that it is caused from eating too much sugar, or if you hear someone saying they knew someone who had diabetes who did not take care of themselves, or if you listen to a joke about how eating one more slice of cake will give you diabetes, can you gently correct them? Can you let them know the truth? Can you STOP the blame game?

I promise that if you work hard at not blaming me, I’ll work hard at not blaming myself.

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The Second Year

 

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Dear Friends,

We are still here. We have given approximately 3,650 shots to our boy. We have pricked his little fingers over 4,000 times. We have travelled to see an endocrinologist 12 times. We have survived a stomach bug, strep throat, and bronchitis. We have seen highs reach almost 400 and lows reach almost 40. We have been to the pharmacy for supplies and medication 83 times. We have lost 730 hours of sleep. And this is only year two.

Did I imagine all this when Hugh was first diagnosed two years ago? Of course not. I had no idea what would be required of him and us to simply keep him alive. Would I have wanted someone to tell me? Probably not.

Recently our little family took a vacation to the mountains. A chance to rest. A chance to be together. A chance to breathe. We wanted to hike to the highest point. We wanted to SEE what was before us and below us. We wanted to be in AWE.

But we couldn’t see. The fog was so dense that there was no view.

 

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We longed to catch a glimpse of the vastness below us and the beauty that we knew was surely there, if only the fog would lift and the sun would shine.

 

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They told us that the view would be amazing, but to be careful – it was also a little dangerous. They told us to hold our childrens’ hands tightly and to not get too close to the edge.

But a funny thing happens when you can’t see the vastness – it’s not scary at all. You walk right up to the edge and your heart is not even pounding. You’re not scared because you can’t see enough to be scared.

 

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You are not scared, but you are not in AWE either. You miss the beauty of it all.

You are forced to take a look at what you can see – the little things. The tiny icicles. The way the wind blows the ice in one direction. The fragile branch that can bear so much weight.

 

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Could I have told you the beauty of diabetes without knowing the fear? Would I have noticed the beauty in the little things if I could have seen the big picture?

Probably not.

Because there is fear in diabetes, but there is also beauty beyond words. There is a joy of knowing my son was dying, and is now alive. There is a love of life that only comes when you have been close to death and realize that each and every day is a chance to stand on a mountain top.

There is dancing.

 

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And there is loving.

 

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And there is God’s grace, washing over us again and again.

 

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We don’t know what diabetes holds for us next. I’m sure there will be battles we have yet to face. But we know there is beauty in it.

When we left the mountains, Scott and I made a promise to our kids. We would come back to this place. We would hike again to the highest point. We want to be a little scared of what we see before us, but we also want to be in awe.

With Love,

Sally

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Swim With the Others

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This boy – y’all, he continues to amaze me. I guess I shouldn’t be surprised. Most kids are amazing. Most kids can remind us of things that we have forgotten as adults. Most kids can teach us things if we only stop to listen.

I know Hugh is not the only amazing kid out there. His sister is pretty amazing, too, with her unique fashion sense and sheer command of the world around her.

 

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I teach some pretty amazing kids. I know kids who are fighting battles of their own, some not as visible as Hugh’s, and I am always amazed at their strength, resilience, and joyfulness in spite of their circumstances. Kids are amazing in general, I think.

So I really should not be surprised when Hugh says things that make me pause and marvel at his attitude in life. But I still am.

Hugh is not the kind of kid who is competitive or naturally aggressive. He tried playing soccer one year and was much more interested in singing and dancing for the crowd than running after the ball. When we would tell him to try and go kick the ball with the others, he would look at us with a quizzical expression, as if that were the craziest thing he had ever heard. Why should he go get the ball when there were ten other kids chasing after it? He had much more fun lagging behind and waving to the crowd.

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Sports just aren’t his thing, so his dad and I were thrilled when he decided to join the swim team. And we were even more excited when we discovered he was a pretty good little swimmer, with his long legs and torso propelling him quickly through the water.

Swimming has been an excellent sport for him and he enjoys the camaraderie. I can’t say enough about his coaches, who have been so patient with him. It hasn’t been easy – we check his blood sugar regularly as he swims, wiping his wet and wrinkled fingers on a beach towel as he is dripping pool water on our heads. There have been times his blood sugar has spiked and we have had to leave early, other times I have sat nervously on the sidelines when his blood sugar is dropping low. His coaches understand there are days he feels great and days where he is sluggish and slow. They are encouraging and compassionate through it all, and it has truly been a great experience for Hugh.

So imagine what went through my head when I was helping Hugh get ready for swim practice a few days ago, and he tells me “You know, Mom, sometimes when I’m ahead of the others in the pool, I slow down a little bit to let them catch up. I want to swim with the others.”

Of course, the first thing out of my mouth was “Hugh! The whole point of swimming on a swim team is to be first! You can’t slow down! You have to go super fast and beat everyone else!”

He gave me that same quizzical look as he gave me when he played soccer. As if that made no sense to him at all. Why would he want to be out there way ahead of everyone else in the pool? Why wouldn’t he want to swim with all his friends?

It was only later that night that I began to think about what he had told me. Again, I really shouldn’t be surprised. That is my son – always wanting to be surrounded my people, having fun, enjoying life. He doesn’t understand the hurry of things. He doesn’t get that there are races in life and that people want to be first. He doesn’t buy into any of that.

And then I started thinking, you know, there are a lot of times I feel alone with this disease. I feel like none of my friends understand what it is like to have a child with diabetes. When I wake up in the middle of the night to check Hugh’s blood sugar and the fear grips my heart as I lean over the bed, watching to see if he is still breathing, the loneliness surrounds me. Not many people can sympathize with that type of fear. Diabetes can be a lonely and isolating thing. Sometimes it feels like I’m in a huge, dark pool and I am swimming alone.

But maybe, just maybe, I am not alone. If I look behind me there are others in the pool with me, and they have helped me time and time again. There are family members, too many to count, who live diabetes with us, day in and day out. There are friends, who will never understand, but who show up anyway and are not afraid to listen. There are other parents of children with diabetes, who lift us up and never let us lose hope. We are not alone.

Maybe I should take Hugh’s advice. Maybe life is not a race. Maybe I should slow down, let others catch up with me, and swim together.

 

 

 

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