type 1

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 Cure

A Letter to Hugh –

Dear Son,

I am writing this letter to you because, years from now, I want you to remember a very special day. I want you to remember the day you had a lemonade stand to raise money for JDRF.

It was a drizzly summer day – the kind of days that happen often in June in Louisiana. The grass was wet and soft from a morning shower, the air was hot and sticky. Our hair clung to our foreheads and the back of our necks before we even started. The birds were splashing in the rain puddles in the driveway. The air smelled slightly of jasmine and wet grass. And I was secretly afraid that no one would show up because the weather was just not conducive to a lemonade stand kind of day.

But then we had our first customers – neighbors and friends from down the street who couldn’t stay for a cup of lemonade, but wanted to make a donation anyway. Our second customer was a friend from church, who came to buy lemonade but also brought us fresh squash and cucumbers (be very glad you live in the South, where people love to share the bounties of their summer gardens). Our third customer was a three year old, who sat in a chair on our front porch and devoured a tea cookie as big as both his hands. Our fourth customers were friends and neighbors who raised a son with Type 1 Diabetes 40 years ago, and they are all strong and gracious and wonderful people who encourage us constantly.

I lost count after that. But I can tell you that we had more people come to your lemonade stand than I could have possibly dreamed of. We had neighbors who walked and rode their bikes. We had Mommy’s and Daddy’s friends from high school. We had new friends. We had strangers who happened to hear about the lemonade stand and want to donate. We had your school friends and your school nurses. We had co-workers. We had aunts and uncles and cousins. We had Daddy’s family who drove 2 HOURS just to come buy some lemonade! We had teachers. We even had a few dogs. And right when we thought our lemonade stand was winding down, we had a whole mass of people from our church show up after a funeral – Buying lemonade in their suits and high heels, standing in wet grass and 100% humidity.

Some people lingered on our front porch – sipping lemonade and visiting. Some people stopped by quickly and only stayed a few minutes. There were children there who had brought their own money to buy a cup of lemonade. There were adults there who pulled out their wallets and were so generous it made my eyes water. People rocked in our rocking chairs and kids ran in the rain. That day, our front porch became one of the most beautiful places I had ever seen.

And the money didn’t stop there. People pressed it into my palm the next day at church. We received money in the mail the next week. People from other churches donated. Some donated online. One lady who barely makes it month to month while trying to raise her grandchildren gave us $5 – the widow’s mite if I have ever seen one. Our goal of raising $100 was blown out of the water and we raised over $1,500!

That afternoon, as we were putting away the tables and chairs, you and your Daddy counted the money. When we realized it was over $1,000, we all started laughing and jumping up and down and hugging. And then you stopped, looked up at me mid-hug, and almost whispered “Is that enough for a cure?”

I didn’t know what to say to you in that moment. So I just squeezed you tight and told you that it would certainly help. I told you that organizations like JDRF are working so hard to find a cure and any money we can give them is wonderful.

But what I should have told you is this:

Today is the cure.

Because there will be times in your life when diabetes gets really hard. Type 1 Diabetes is not easy, it’s not fair, there are no time-outs, and it is an exhausting burden to carry. But when that burden gets too big, remember the lemonade stand day.

Remember your sister, who stayed by your side the entire day. She was just as excited as you. She baked cookies and made signs. She collected money and never stopped for a break. She is your cure.

Remember both sets of your grandparents, who sat out in the heat and humidity the entire time. They helped make the lemonade, ran last minute errands for us, and stayed late to help us clean up. They are your cure.

Remember the church members, who came to buy lemonade and cookies while wearing funeral clothes. They know that sometimes life is mourning those who have left us while loving and supporting those who are still with us. Church is your cure.

Years from now, when you are on your own and away from me, and diabetes becomes too hard, and you just wish you didn’t have to poke your finger one more time or calculate every food that you have to eat, and all you want is a cure – know that you have already found one.

And when others come to you, and tell you their burdens are too big, and their problems are too hard, I hope you tell them the story of the lemonade stand day. I hope you tell them how our family was healed that day. I hope you tell them that people are good and kind and generous.

And if they ask you for a cure, I hope you tell them the cure is this – we are never alone.

                                                                     Love, Mom

*To find out more about JDRF and what your money goes to support, click here.

 

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