Type 1 Diabetes

Don’t Forget That It’s Hard

Don’t forget that it’s hard. 

These words have been on repeat in my head for several months now. 

Don’t forget that it’s hard. 

Honestly, I thought that diabetes would be easier by now. And to be fair – it is in a lot of ways. New technology has given me the gift of sleep, something I realized I hadn’t had in 10 years. And it’s given Hugh independence and freedom – more than I thought possible when he was first diagnosed. 

And yes, diabetic issues are now second nature to us. We don’t even blink when there are low blood sugars or site changes or supply order problems. We live a life with diabetes in the background most days, kind of like that annoying pain in your back or rattle in your car. You simply learn to live with it. 

But just because we have learned to live with Type 1 diabetes doesn’t mean it’s not hard. 

I have to remind myself of that often.

Don’t forget that it’s hard. 

Especially when you are a 15 year old boy who is navigating the choppy waters of high school, where all you want to do is fit in and not have to worry about things like blood sugar and boluses and alarms ringing out throughout the school day. 

Don’t forget that it’s hard. 

New issues have popped up, like going on overnight trips, learning to drive (What do I do if my sugar drops low and I’m driving, Mom???), the inevitable feeling of invincibility that naturally floods a teenagers brain, and yes, the occasional rebellion from it all. 

Don’t forget that it’s hard. 

When I get upset with him, when he lashes out at me, when I just don’t understand why he would ignore his alarms, I whisper these words to myself. Of course he’s going to lash out. Of course he will have times when he burns out with alarms. Of course he’s sick of diabetes. It’s so utterly and unfairly and miserably hard. 

So what should I do? When I open my eyes to recognize the hard he is living? 

The only thing I know how to do. Give him lots of grace. More grace than what I think he deserves sometimes. Pour heaping amounts of love on top of him. Squeeze him tight on those really tough days and whisper to him that he can do hard things and that we will always help him. Tell him that he’s never alone. 

Maybe the hard is a gift – something I don’t like to admit, but that I’m slowly coming to terms with. Maybe the hard is not just something my family has to go through. Maybe everyone has their own hard thing in their own lives. 

Maybe that’s the gift. Recognizing that hard is hard and we all have to live with it. The divorce. The lost child. The cancer. The betrayal. The bankruptcy. The drug addiction. The loneliness. The job loss. 

I look around a crowded room and I realize the hard is all around me. Maybe the gift of my family’s hard is that now I can see it in others. 

So what should I do? When I open my eyes to recognize the hard others are living? 

The only thing I know how to do. Give them lots of grace. More grace than what I think they deserve sometimes. Pour heaping amounts of love on top of them. Squeeze them tight on those really tough days and whisper to them that they can do hard things and that I will help them. Tell them they are never alone. 

Don’t forget that it’s hard. 

On my really bad days, when I get so angry that my son is living with this, when I lash out at my family and curse the D word all over again, I try to remind myself of these words too. 

Don’t forget that it’s hard, Mama. 

Then somehow, in some beautiful way, I am given grace. More grace than what I deserve. Love is poured on top of me and I can feel arms squeezing me tight – arms that I can’t see, but I know are there. I hear a whisper in my heart  that I can do hard things and that He is right there to help me. And I am reminded once again, that  I am never alone – even when it’s hard. 

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The Blanket

It’s 2 AM as I finally crawl into the hotel bed after sitting on the floor for almost 3 hours. Hugh’s blood sugar has plummeted after a long day at a school convention out of town. As hard as I try, his blood sugar stubbornly careens to levels that would put a grown man in the hospital. 

I give him 4 juice boxes to bring it up as I crouch next to the air mattress he is sleeping on. He wakes up on his second juice box, nauseated and disoriented from the crashing low. I bring a trash can over to his bedside. I wipe his forehead with my hands. I shove candy into the side of his mouth so it will absorb through his cheeks. 

He tells me he feels horrible, like his entire body is on fire. He groans and grits his teeth. I tell him he’s ok, that his blood sugar will be coming up soon. I don’t completely believe what I’m telling him. My hands are shaking, but I don’t want Hugh to see that, so I quickly tuck them under my legs. 

I google when I should administer the life-saving glucagon we carry with us at all times – the medicine I give him if his body loses the fight with his blood sugar. I know the answer, of course. I don’t need google to tell me it’s only when he is unconscious. But I do it anyway. Because I feel lost and scared and somehow, google knows all the answers. 

Slowly, painfully, Hugh’s blood sugar begins to rise. He is safe for now. Three hours of sitting on the floor has caused my joints to stiffen. I limp as I stand up. 

I feel his face one more time before I collapse into bed. I brush my hands over his forehead, his cheeks, his hair. He’s ok. We will sleep for a few hours before waking up at 7 for another full day of activities. We won’t tell anyone about the scare this night. Not because we don’t want to talk about it, but because no one will really understand. 

As I lay with my cheek on the pillow, facing Hugh in case he needs me again, I feel it once more. Anger. Hot, boiling, seething, red anger – and it settles around me like an old, heavy blanket. Cumbersome and oppressing, yet familiar and comfortable. 

I’ve worn this blanket before. And sometimes it feels good to wrap it around me. It feels deserving – even justified. 

I’m angry at myself, for missing the cues that Hugh was dropping low. Good heavens, Sally. You would think after 9 years of doing this you could get it right. You should be able to keep him safe. How could you have let this happen? 

I’m angry at you – all of you who don’t have to live this life. Everyone who sleeps soundly at night with no alarms and no blood sugar checks. All of you who have healthy children. My anger burns hot toward the naive and the un-tested. 

And I’m angry at the Man Upstairs, who could allow this to happen to an innocent child. A child who only deserves good and pure things in this world. What kind of God gives this burden to a boy?

I pull my blanket of anger tighter around my shoulders. I like the way it feels tonight. The blanket settles around me and keeps me warm. It gives me the excuse I need to spew flames into the world. 

As I grip my blanket tighter, as the justified anger seeps into my bones, as I begin to allow it to stick around, Hugh rolls over and looks at me. “Thanks, Mom” he says sleepily and then closes his eyes. 

“You’re welcome, baby” I whisper into the dark. 

And I slowly unwrap the blanket from my shoulders. I fold it neatly and smooth out the wrinkles. I give it one last squeeze, then I place it in the closet and close the door. I know it will always be there, but I also know there is only one thing that can free me from it. 

I’m sure you know what that one thing is too, but I’ll go ahead and tell you. It’s Love. 

Love wins every time. Love gently unwraps the heavy blanket of anger or fear or pride or hurt and replaces it with arms that embrace me instead. 

Love turns my head to see you – because you’re wearing a blanket too, sometimes. 

Love helps me notice that we all have blankets of anger. And while your’s may not be because of diabetes, it’s there just the same. Maybe it’s given to you after a divorce or a death or a failure or a betrayal. Maybe you try to hide it by hurting others or seeing the world as a dark and scary place. But Love shows me that what really is going on is that blanket – The one you can’t quite ever leave behind. 

And yet, Love whispers to me and to you again and again that when life is hard, when we hurt, when we are afraid, when our anger takes over, we can turn to Love. 

Love will hold our hand. Love will walk with us. Love won’t make us feel comfortable, but will give us joy beyond belief. And in this Love, we will want to share it with the whole world. 

So take off your blankets with me, dear friends, and join me in the One who Loves. I have been told that our lives will never be the same. 

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The Man in the White Coat

Sometimes I picture him as an older man. He has a grey beard and silver hair and wrinkles around the corner of his eyes. Sometimes I picture him as a young man. He is just starting out his career and is learning the hard ropes of being a doctor. At times his skin is light, other times it is a beautiful mix of brown and gold. Sometimes, in my mind, he has a stethoscope slung carelessly around his neck because he had seen so many patients that day and we were his last ones before his long shift ended. Other times he is dressed crisp and neatly, with pressed pants and a starched shirt. He is ready for whatever might come his way as he is just starting his rounds at the hospital. 

Honestly, I can’t remember what he looks like. I’ve tried over the years – I’ve tried to conjure up the image of that doctor who saved me that night in the ER. I can’t ever really picture him, so I like to make him look all different kinds of ways. I wish I could remember. I wish I knew his name. 

But the only thing I can really say for sure is that he was wearing a white coat. 

The man in the white coat is the one who lifted me up on that awful, miserable day. He rescued me from a tomb of fear, anger, despair, and utter destruction. He set me on the path that would lead to hope and love and faith in humankind. 

And I can’t even remember what he looked like. 

I guess it doesn’t matter, really. Because the fact is what he looked like was the last thing I was concerned about in that moment. I didn’t care who he had voted for in the last election. I didn’t care if he was conservative or liberal. I didn’t care about his beliefs or his convictions. His lifestyle, his charities, his political views . . . nothing mattered except one thing. 

He was kind. 

Scott and I were scared in ways we didn’t know was possible as we brought our young, frail, and very sick child into the man in the white coat’s emergency room. He was the rotating doctor in charge on the wing that evening. He could have easily dismissed us as one more patient he had to deal with. He could have rushed in and out with an attitude of busyness. He could have simply looked at the diagnosis of Type 1 Diabetes, thought to himself “Here we go again”, and gone through the steps of treating a sick boy. 

The man in the white coat did none of those things. 

Instead, he came into our small patient room. He saw two parents who were stricken with grief over their child. He saw the look in our eyes of panic. He saw a mother who was drowning. 

So the man in the white coat stops. He smiles. He puts the chart down and leans against the wall, casually crossing one ankle over the other. “Where are you from?” he asks softly. 

“Quite a drive in a rainstorm like this.” 

“I’m sorry to hear about your son’s diagnosis.”

And then the words that would start turning everything around – 

“I want you to know we’re going to do this right. Your little boy is going to have to endure a lifetime of shots and hospital visits from now on. We want to make sure that he starts off well.”

The man in the white coat carefully explains to us what they will do that night. No holding Hugh down kicking and screaming to get an IV in. “We’ll take our time,” he says. “We will bring in a specialist in helping children through this process.” 

He tells us that they will be careful with Hugh. That they want this to be a positive experience for him and that the hospital doesn’t need to be a scary place. He assures us that everything the nurses and doctors do will be to the end goal of getting Hugh healthy and safe. “Your son will be ok,” the man in the white coat says. “We will make sure of it.” And he did. 

I think about him at least once a week. 

Sometimes I close my eyes and think of him as I’m sitting on the floor of a family’s home. The mother is telling me she doesn’t have any money. The dad has gone to jail. Drug use is obvious and normal in their life. What would the man in the white coat do?

He would show kindness. He wouldn’t lecture or criticize. He would listen. He would do it right. 

Or I picture him when I become overwhelmed. When Type 1 Diabetes seems to be winning. When I just don’t want to do it anymore. 

The man in the white coat told us we would be ok. 

There are even times I picture him when the world seems dark and angry. When I start to wonder if any human being alive can be kind, I close my eyes and standing there is the man in the white coat. He was kind. 

I’ve probably created an image over the years in my mind of who the man in the white coat is. I’m probably mixing in a little of my imagination with a little bit of Jesus and a dash of who I hope to be. But man – if we could all just strive to be that kind of person. The person who helps instead of hurts. The person who listens instead of argues. The person who sees someone drowning and reaches down a hand – no questions asked. 

Because the truth is, the man in the white coat COULD be all of us. If we stopped asking whose side are you on, if we quit hurrying around, if we put kindness before accusations. 

In fact, I bet there’s a white coat hanging around your house somewhere and you’ve just forgotten about it. Go ahead – Reach way back into your closet and find your old and tattered white coat (or pink or navy or glittery or whatever floats your boat). Slip into it – doesn’t it feel good to put it on, kind of like you should have been wearing it all along? Doesn’t it fit you like a glove? Don’t you feel like yourself now that you’re wearing it again?

Now go admire yourself in the mirror. Do a few turns and check yourself out. Wow, that white coat looks good on you. 

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