The Longest Day: Part 1

I’ve thought a long time about how to share Hugh’s diagnosis day story. It’s hard to tell his story without sounding sad and dramatic. It’s hard to tell it without sounding egocentric – as if we were the only ones with this type of story to tell. It’s hard to write it with hope and optimism. It’s hard to share it period.

But I hope you can look past the tears with which it was written. I hope you can understand this mama’s heart and how my spirit felt so crushed that day. I hope you can read between the lines and realize how God’s hand was on us that day and how He carried us through. I hope you know God’s hand is on you too – all the time. Because I would not share this if it were just a story. I hope you can see it is so much more –

 

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The day Hugh was diagnosed started off as another busy Tuesday. We celebrated Hugh’s birthday at school that morning – he had just turned 5 and I brought green jello and green drinks to his class. I was also one of the teachers for Hugh’s class and I was busy with teaching lessons, corralling busy 4 and 5 year olds in the room, and lesson planning after school. But something had been nagging me and I was upset. Hugh was sick.

Two weeks earlier Hugh had gotten his tonsils removed after chronic strep infections for over a year. We thought this would help him feel better. We thought the constant fever and sore throat made him irritable, grumpy, and have lots of tummy aches. But he was only getting worse.

He cried for no reason. He was tired all the time. And the weekend prior to that Tuesday he started going to the bathroom at least every hour. He started waking up at night to go to the bathroom. His hunger was never satisfied. He crammed food in his mouth like he was starving. He looked so skinny people were starting to comment. After the third person commented about how thin he looked, I got the scale from our school and weighed him. He was 5 years old and weighed 38 lbs. Since getting his tonsils out, he had lost 4 lbs. When his thirst became unquenchable, I knew. When he was washing his hands in the sink and he told me he was so thirsty he wanted to drink the soapy water pooled at the bottom, I called the doctor.

“Could this be something related to getting his tonsils out?” I asked the doctor when we went on Tuesday afternoon. “Is his body flushing out the anesthesia or could it be thyroid related? You know, his dad has thyroid problems.”

Our kind and patient doctor just looked at me with sad eyes. “You know what this is,” he said. He had not even done a blood or urine test, but he knew by just looking at Hugh. And I knew too.

“Well, I know it can be a sign of diabetes, but that can’t be it. I’m sure it’s something else.”

Our doctor just smiled and said he would run the tests and we would know for sure in 5 minutes.

We knew in the next two minutes.

“He’s got it – type 1 diabetes. His blood sugar is 388. A1C 7.9. A few ketones in his urine, but not bad right now. He’s ok – you caught it early”. Of course, all these numbers just swirled around in my head. I had no idea what a normal blood sugar was supposed to be and had never heard of an A1C number or ketones. At that moment, I went numb.

Now this is the part of the story that is hard for me to share. All I can tell you is that God saw a mother who was numb with shock and a small boy who was sick and confused. And He wrapped his arms around us and carried us through. It’s hard  to share because I don’t believe that God chooses to shine favor on some and not on others. I don’t believe He helped me that day and not the mother the next day who was in the same doctor’s office. I don’t believe I deserved His help because I prayed to him and another mother did not. In fact, in that moment, I didn’t pray at all. I did not even think about God.

But He was with me anyway, and I have to believe He is with all mothers in that moment. He shines his favor on all of us – we just have to choose to see it.

“I’m sending you to the best pediatric endocrinologist I know,” our doctor said. “You need a team of people to help you with this. You’re going to be ok and these people will make sure of it. Call Scott. You need to leave right away.”

He walks out of the room and I pick up my phone to call Scott. I have to try several times before he will answer and I tell him briefly what I know. We hang up quickly. What I don’t realize in that moment is that Scott had been in a meeting with a local businessman in his office. Scott apologizes for taking the call, but knew if I called repeatedly something must be wrong. When Scott hangs up the phone, the businessman says “Are you ok? You look like you just got some bad news.”

Scott is stunned and simply answers, “I think I am going to have to leave right away for Baton Rouge. My son has just been diagnosed with diabetes. We have to go see an endocrinologist there.”

The businessman smiles and says, “Then you are going to see my sister. She is the pediatric endocrinologist there.”

And he picks up his cell phone and calls his sister.

And of course, she answers right away. They speak to each other a few moments and then HE HANDS HIS PHONE TO SCOTT.

And Scott is able to talk to her and let her know we are coming and she tells him SHE WILL BE WAITING FOR US.

When our pediatrician walks back into the patient room, he is stunned and says, “How did Scott talk to the endocrinologist before I did? I just talked to her and she said she already knows about your family.”

And all I can do is shake my head, because in that moment I did not choose to see God. I just couldn’t. All I knew was that everything I had held firm and fast to in my life had just crumbled, and I was fighting hard, yanking with all my might, to regain control.

It would be a long time before I chose to see God again.

To Be Continued . . .

 

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When His Story Becomes Her Story

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A friend and I were laughing the other day about Amelia, and how she always interjects something when people are asking Hugh about his diabetes. My friend told me that Hugh was in a little class at church and they were giving him a few minutes to answer questions about Type 1 Diabetes, except the problem was he couldn’t say anything because Amelia kept answering for him. I told my friend I think half the time Amelia wants to have diabetes too, but without all the shots.

Most of the time before we eat, Amelia will ask me if I have checked Hugh’s blood sugar. “Yes, I checked it”, I tell her.

“What was it?” she asks – in a tone that is way too grown up for a toddler.

“136”, I say.

“Good” she almost always replies.

She’s three. She has no idea what the number 136 is. She can only count to 20 (on a good day).

So why do I tell her and why does she care?

Because, I realized after talking to my friend that day, diabetes is her story too. It is woven into her life just as much as it is woven into Hugh’s. She lives the blood sugar checks and insulin injections and carb counting and worrying and planning and the hundreds of other things that diabetes brings with it when it enters your home.

And I wouldn’t have it any other way.

You see, this is not just Hugh’s story to tell. It is all of ours. It is his teachers’ at school who take care of him every day. It is his grandparents’ who spoil and protect him with a ferocity that I can’t even muster. It is his friends’ who will grow up knowing a kid who had diabetes and did everything they could do. It is his dad’s and it is mine.

Maybe that is part of what Jesus meant when he said the second greatest commandment is to love your neighbor as yourself.

Maybe we can only do that when their story becomes our story.

When we walk with them through the darkness and hold their hand and don’t say anything because there are no words to even say that can bring healing. When we are just there, taking their story on as our own.

Maybe loving your neighbor as yourself looks a little bit like giving up gummies, because your brother can’t eat them.

Maybe it looks like getting your finger pricked and checking your blood sugar, even when you don’t need to.

Maybe it looks like asking what Hugh’s blood sugar number is, when you can only count to 20.

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Hugh’s Story

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In the South, our stories of who we are and who we belong to are as important as the blue skies above us. Our stories run through us, they become us, they make us proud of where we came from and where we are going. Our stories weave texture into our lives. Our stories strengthen us. Our stories help us survive.

Hugh’s story is not really his story. It is not mine and it is not his dad’s. Hugh’s story is more. Just like all our stories in our lives. It did not begin with us.

Hugh’s story began even before I was born, when my parents became friends with a young man who had Type 1 Diabetes while they were in seminary. They became such good friends that he was the minister at their wedding. They became such good friends that I grew up hearing about how he gave himself insulin injections and how his wife planned each and every meal. They became such good friends that I visited his house as a child and was curious to find out more about diabetes and how he could live his life under such strict conditions. His story was woven into mine.

Hugh’s story began when I was in elementary school and was in the same class as a little boy who had Type 1 Diabetes. I watched him leave class every afternoon to eat a snack in the cafeteria. I watched him grow with the rest of us. I watched how he was the same as everyone else. His story was woven into mine.

Hugh’s story began when I was on college and worked with a girl in our campus library who became very skinny one semester. She complained of never feeling good, always being thirsty, running to the bathroom all the time, and throwing up after she ate. She passed out one day in class. She was diagnosed with Type 1 Diabetes. Her story was woven into mine.

Hugh’s story began when his dad, Scott, started his career at a local bank. Scott became friends with a co-worker who had Type 1 Diabetes. Scott would come home telling me how his co-worker had something called an insulin pump, that looked like a beeper. Scott told me how his friend would have to be careful about what he ate when they went on business lunches. Scott told me how his friend was rushed to the emergency room one evening because he had accidentally mixed up his insulin dosage. His story was woven into mine.

I am telling you this because Hugh’s diagnosis day could have been very different, if not for these others who shared their story and their lives with us. If not for the girl I worked with in college, I would not have known the symptoms of Type 1 Diabetes. If not for my parents’ good friend, my mom would not have encouraged me to call the doctor when Hugh was first showing the signs of Type 1. If not for Scott’s co-worker, I would not have had the hope that young boys with Type 1 can grow into strong, confident, and capable men. If not for the little boy in my classroom in elementary school, I would not have known that Hugh could be the same as everyone else.

Their stories melted with my story that day. And I hope my story will melt into yours.

It will take some time to tell it. Like all our stories in the South, it is long and must be listened to slowly. Make yourself a cup of coffee or a glass of sweet tea – that’s the only way to listen to a story here. And please be patient with the story teller. Sometimes the lesson is not for the listener, but for the one telling the story.

To Be Continued . . .

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