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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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In It Together

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Last week our little family loaded up the car early in the morning and headed down to Baton Rouge for Hugh’s endocrinology appointment. Because Hugh has Type 1 Diabetes, he will have to see an endocrinologist every 3 months for the rest of his life. Not just until he reaches adulthood. Not just until he reaches his 40s. For the rest of his life.

That’s a lot to handle, in my opinion, so we always try to make the trip a family event. Scott and I take off work and we bring Amelia, even though I’m sure Hugh would rather his little sister not tag along most of the time. A lot of times my mom will join us as well, since we rely on her so much to help us with Hugh. Occasionally my dad will make the trip, too.

When the doctor enters the patient room, she knows to expect a crowd. She gives Hugh a hug, then turns around and gives the same hug to Amelia. It’s probably a little strange to have so many in one room, but our doctor never complains about it. I think she gets it.

On the way down to Baton Rouge on this trip, Hugh starts asking if Amelia will always have to come with us (she was being rather annoying and making all sorts of noises to irritate her brother). I told him not always – I’m sure we won’t always be able to arrange schedules and lives to be together for his appointments.

He said he hoped his wife would be able to come with us one day.

“With us? You don’t want it to be just you and your wife at your appointment?”

He replied, no – that he wanted it to be with his parents, and his wife could come along if she felt like it.

That’s right. Move over, wifey. Take your place right behind his mama. I’m sure there’s room for you in the trunk.

So why do we make such an effort to ALL go to Baton Rouge for his doctor’s appointments?

The answer is simple – I hope he looks back on these days with us and realizes he was never alone.

Type 1 Diabetes is a lonely disease. None of Hugh’s friends have to check their blood sugar. None of his friends have to wear a pump. None of his friends have to count carbs, drink juice in the middle of the night, worry about ketones, have nightmares of low blood sugars and no one helping him, skip a cupcake because of high blood sugar, or carry emergency glucagon everywhere.

It can be isolating and depressing to be the only one.

So we go. We go to show him we are in this together. He doesn’t have to face this alone. We will fight the fight right along with him. We will be the pillar when he crumbles, we will be the shoulder for the tears. We will prick our own fingers, we will carry the juice boxes. We will not leave him alone.

And friends, is there anything more in life than to know that you are not alone? There is a God who loves us, and family and friends who are by our side. What more do we need?

If I have learned anything from Hugh having Type 1 Diabetes it is that we need to show up for each other. And we need to keep showing up for as long as it takes. We don’t have to judge. We don’t have to criticize. We don’t have to put people in their place or condemn or condone. We usually don’t even have to say anything.

Sometimes, just sitting next to your big brother and reading a book in the doctor’s office is enough.

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Teaching and Learning With a Type 1 Diabetic Student

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Sally’s Note:

Ms. Hill was Hugh’s kindergarten teacher who literally saved me from drowning in all my worries and fears his first year in public school. She was more than a teacher, she became a dear friend – as have subsequent teachers who have taught Hugh. Teachers have a hard job, and adding a child with special needs makes it so much harder. But all of Hugh’s teachers have been up for the challenge and have worked with us in every possible way. There’s a lot of give and take, a lot of calling and texting, a lot of reminders and notes, a lot of tears (ok, mainly on my part the first day of school when I have to drop Hugh off and he’s getting older and needing me less and what if his blood sugar drops and what if his blood sugar is high and well, you get the idea!) I asked Ms. Hill to write this for other teachers, but I also hope it helps parents of children of all abilities realize how hard their teachers work to get it right. There are no words to express my gratitude to all of Hugh’s teachers who went above and beyond their job description to do just that.

 

Teaching and Learning With a Type 1 Diabetic Student

They knew he was different, yet they knew he was the same. Hugh went to the office several times a day, but he did not look sick. He never ate that birthday cupcake like everyone else (always icing first), but he did take his cupcake home for later. He had cool stuff in his lunch box, but there was always a special piece of paper with some numbers on it. You wouldn’t see an oatmeal cream pie in that lunch box, but sometimes there was a Hershey’s kiss. Hugh ran just as fast as the others in his kindergarten class. He was one of the first to begin reading. Hugh was a great artist and story teller. He could do everything a strong kindergartener could do and then some, but Hugh has Type 1 Diabetes.

When I was informed during the summer that I would have a diabetic student on my roster, it of course sent a fear through me. What if I did something wrong? I am not a nurse. I am only qualified to apply cute band aids and boo-boo bunnies, to check warm foreheads with the back of my hand, and be intuitive about that kid that looks a bit green in the lunchroom. My first thought was, “I am going to screw this up”! Sixteen years had gone by, without having a student with serious medical conditions, but it didn’t take long for me to realize something. God would give me the tools I needed to be the teacher and care giver that Hugh needed. I had a lot to learn about Diabetic kids. I started by doing some online research. I thought about how this special child would want to be treated like everyone else, with empathy and not sympathy. I thought about his parents and how they would need some reassurance that I got this! I thought about how I could make a difficult situation be a learning experience of character and awareness for all the students in our class.

Are you going to be a teacher or a care giver of a student with Type 1 Diabetes? You can do it. Each child is different, but I’d like to share a few things that made our school year together a successful one.

  1. Meet with your student and their family before school starts somewhere casual. Hugh’s mom and I scheduled a meeting at Chick Fil A. We had lemonade and talked as Hugh and his sister played. Meeting before school in a casual atmosphere put us all at ease and it helped me connect with this precious family.
  2. Get all the school faculty “in the know”. Hugh’s mom sent several important things that gave our entire faculty some piece of mind. She sent documents with Hugh’s picture, condition, and emergency directions. I put it in my substitute binder in case I was out of the classroom. We had them in the office as well. Hugh had about 5 other teachers, such as P.E. and enrichment classes. We all received an emergency snack pack in case his blood sugar dropped. The first few weeks of school, I made sure his art, music, computer, library, and P.E. teachers knew just who Hugh was and reminded them of his condition. During the school year, if any of his enrichment teachers had a substitute, I would discretely ask them not to dismiss any complaint Hugh might have and to always send him to the office with a buddy if he had a complaint.
  3. Give a diabetic student your full attention If you’re a teacher, you know kids will come to you 100 times a day and only about 1 or 2 of those times is even necessary. We make split second decisions on what we should pay attention to and what to brush off. With Hugh, I was lucky; he was not a needy child. He was very independent and didn’t need me to fix things for him often. So when Hugh came to me, I always stopped what I was doing and looked him in the eye to assess his situation. Teachers have a mother instinct. These instincts often directed me in the decisions I made in his daily routines. If I was ever in question about something he should eat, how his face looked a bit paler than normal, a nervous look in his eye, or a sign of lethargy, I would call mom or our amazing school secretary.
  4. I can’t stress enough how important the school secretary is if your school doesn’t have a full time nurse. Make sure you work well with her and that you are on the same page. The more people being aware and trained with a diabetic student, the better.
  5. Make them fit in and not stand out. It was important to me to make Hugh feel he was as normal as everyone, so I tried to always stay calm and reassuring. I never called him out about his condition and tried to handle all matters discreetly. However, I let him own it. When we had our weekly letter of Dd, I used that opportunity to let Hugh teach his classmates what Diabetes was all about. Dd is for Diabetes. He did great! The kids asked him questions like, “Do the shots hurt?”, “Does diabetes go away?”, “Can I catch it?” and the hard one, “Why did you get Diabetes?” Hugh answered all their questions better than I could have. After that day, his classmates were like oh, okay, and it was business as usual. But this was empowering for Hugh. He could handle this condition he had and he could help his friends be aware of this disease. His friends that would be with him for years to come will continue to be by his side, aware and not scared of it all.
  6. Keep an open door. Anytime Hugh’s parents or grandparents wanted to come in, they were welcome, and often they did. This turned out to be the biggest blessing for me as a teacher. Once a week, Hugh’s grandmother came at lunch and hung out with us in the classroom for a couple of hours. She read with some, helped with puzzles and crafts, and all the while she was able to take the pulse of Hugh’s environment. This gave all of us such a feeling of comfort. If you are a teacher that feels strange about parents being in your room because they are critiquing you, please don’t. Do what you always do, and they will trust you. You will be so grateful for that extra set of caring hands.                                                                                                                                                                                                   At the end of the year, I came to the realization that having a child with special needs doesn’t have to be an inconvenience or a cloud always looming overhead. Having a student with Type 1 Diabetes made me the student and Hugh was so often the teacher. I think I received more from this child and his family than I could ever give them. So, have no fear, this can be a great year!

Esther Hill

Kindergarten Teacher @ Phoenix Magnet Elementary

 

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