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 Faces

Dear Son, 

Tomorrow will be 8 years since you have been diagnosed with Type 1 Diabetes. It doesn’t seem possible, really, that it’s been almost a decade since that day. But time has an amazing way of moving on. I guess it’s God’s grace to us – that we keep having days and nights and seasons and years after a nightmare. 

I thought that by now the memories would fade a little, but they haven’t. I still remember every single detail. I remember the way you looked at me in the doctor’s office when you asked me what was wrong with you. I remember those blue eyes of yours opening up wide when I told you that we were going to have to take you to the hospital.

I remember driving in pounding rain and thinking that the sky’s tears were no match for my sobs. 

I remember the numbness I felt in the hospital room. I remember hoping that other people were praying for us because I had no words in my heart. I remember curling up around you in the hospital bed, my arms wrapped around you and my shoulders folded in over you, like I could somehow protect you from what was to come with my body.

I’m sorry I couldn’t protect you.

I remember the shots. All the shots. I remember you asking how long you would have to have needles jabbed in your arms, belly, and legs and I didn’t know how to tell a 5 year old that it would be for the rest of his life. I remember you thinking you only would have diabetes for a short time, then you would be well and have no more needles poking you.

I remember the day you realized this would never end. 

I guess those memories will never shrink for me – they will always trigger fear and helplessness and anger. And maybe I’ve subconsciously made a choice, all these years later, to try to not let those memories take hold of me and control me. I can’t give them power anymore. 

So now before I think of the tears and the pain and the grief, I remember something else. When I think of your diagnosis day, I remember the faces. I see our doctor’s face, sad but kind as he told me we would be ok. I think of nurses’ faces in the emergency room, smiling at you and telling you how cute you were. I think of a doctor who we had never met before staying late and waiting for us at the hospital, her face stern but caring as she walked in the room. I remember the emergency room doctor’s face, assuring us that he would do everything possible for you to begin this journey in a positive way. That he would not scare you or hold you down or traumatize you with needles. 

Do you remember those faces too? I hope you do. Because those faces were the faces of God that day. And I don’t want you to ever forget that. I want you to remember that when the light was taken out of our lives, the faces gave it back to us. 

During that awful time, I thought God had abandoned us. I thought He was far away and that I would never see His face again. 

Son, I was so very wrong about that.

God was there, shining His face on me as He does to all of us. That day His face was brown and pale and old and young and dark-eyed and blue-eyed. Of course I didn’t know if was His face then, but now I can see it so clearly.

I’m sure you know by now, but there will probably be other bad days in your life as you grow. It won’t always be happiness and good times. But when those days come, I want you to do one thing – Look at the faces that are helping you and showing you kindness and surrounding you with love. Look hard at those faces to make sure you remember. And if you stare long enough, I bet you will see the face of God.

Love, 

Mama

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