The Comment Box is Mightier than the Sword

It’s a Facebook Miracle

Uh-oh you haven’t updated your status in 5 minutes!

In the end, resistance was futile.

Since the minute Facebook stormed onto the scene a decade ago, I knew I did not want to get caught up in the hype. I began to detest all “social media,” not only as a regular person who found it tedious and self-serving but also as an actual journalist who saw the demise of the fourth estate. If anyone can say anything anytime, then who the heck knows if anything anyone is saying has any truth to it? But it was Facebook that caught the brunt of my wrath, as I watched otherwise sane people get sucked into this never-ending vortex of “status updates” and “likes” and “friends.” Read the rest of this entry »

Just My Type: The Treasured Moments of Watching A Child Sleep

Sleeping Noelle

Amid all of the stress and anxiety of raising a child with two autoimmune diseases, I have found something to cherish.

When our children are babies, we look at them a lot when they are asleep. That’s partly because they sleep a lot, and partly because they look so precious while sleeping. But we also want to make sure they are OK: I’m sure many of us have put our hand on a sleeping baby’s chest to make sure he/she is breathing!

But once the children are sleeping through the night, once they are toddlers and preschoolers and big kids, how often do we have that peaceful moment of just observing them while they sleep?

Diabetes has given me that. Read the rest of this entry »

Just My Type: Fenway, the Perfect Ending to a Trying Day

Root for the Home Team

The following is a letter I wrote to the Boston Red Sox:

Dear Red Sox,

Sometimes blessings come in unusual packages, like wrapped up in rawhide.

My husband and I attended the Red Sox game at Fenway Park on Wednesday, May 7, with our 8-year-old daughter. It was her first trip to Fenway Park. We wanted to share our story with you.

Right before the game started, a staffer named Mick came to us in our bleacher seats and ask if we wanted to move to better seats, as he had three extra seats in the State Street Pavilion section that were not being used. As we were sitting in the “cheap seats” in the very back corner of the park, under the Jumbo-tron, we agreed and followed him to awesome seats right above the Red Sox dugout. Along the way, he told us he approached us because it was hard to find a party of three and he had seen my daughter wearing her “first visit to Fenway” button.

Here’s what Mick didn’t know: Read the rest of this entry »

Just My Type: Difference of Opinion

Difference of Opinion

In my little corner of Massachusetts, a town board and a town committee recently disagreed over the best course of action. The committee was charged with making a recommendation to the board, which it did; the board decided to go a different direction. The thing is, I believe both groups have people who are caring, hard-working and community-minded. — It’s really hard when there’s a fight but no clear villain.

That’s how I felt recently when I saw a Facebook post from the JDRF North Central CT/Western MA, our local chapter of the organization charged with finding a cure for type one diabetes. In their post, Not just a gadget, JDRF was encouraging people to rally against a New York Times article, Even Small Medical Advances Can Mean Big Jumps in Bills. In particular, JDRF objected to the term “gadget” The Times story used in referring to medical devices like insulin pumps.

I already had read the story before I saw JDRF’s post. I felt sick after reading it. I have long thought the idea of a cure for diabetes is not going to happen because pharmaceutical companies are making an obscene amount of money off of diabetics  Read the rest of this entry »

Just My Type: Brave Little Girls

Sleep Tight

Her face was streaked with tears, her little blonde head bobbing with anguish. “It’s not fair,” she sobbed. “I want to go to the sleepover.”

“I know,” I whispered, sitting next to her and putting my arm around her. “I know.”

The second-grade girl in question? Not my daughter, Noelle, but her Girl Scout Brownie troop-mate I will call Hope, who was just diagnosed with type one diabetes last fall.

I’m used to this scene. It stinks for these little kids who get this disease and can’t be normal. In this case, the troop was planning its first overnight excursion, and Hope’s parents had decided they weren’t ready for this step.

I understood. Hope was getting her insulin pump just two days before the sleepover, and the first days, even weeks, of having a child on an insulin pump are nerve-wracking. Here you are, used to giving shots, knowing exactly what insulin your child was getting, and now your child will be attached to a device that will constantly administer this life-saving but also potentially lethal steroid. It’s a lot of trust to put into a machine the size of an iPod!

As a parent who has been through those days, I got it. But as I hugged the devastated little girl, I got her point, too…

Read the rest of this entry »

Just My Type: From Working Mom to SAHM

Working it Out

I got my first full-time job as a junior in college, working the graveyard shift in the composing room of the Troy Record. I was hoping it would lead to a job in the newsroom, as I was studying journalism at Russell Sage College; it eventually did, and I started my career as a newspaper copy editor a couple months before I graduated. From there, I went on to work at several daily and weekly newspapers in the Northeast over the years, including the entire time I was pregnant with my daughter, Noelle, and seven weeks after she was born.

But this is not an autobiography. This is looking forward.

For the first time since that first job in Troy, N.Y., I am not working full-time anymore… Read the rest of this entry »

Just My Type: Marshmallow Heart

Safe and Sound

Every day when I send Noelle off to school, I am putting her life in the hands of people who are virtual strangers.

“I don’t ever want to talk to you again!”

My daughter, Noelle, uttered these words as she flew out the front door to wait for the school bus. She was angry because she and I had just tussled over her use of her new iPad Mini before school, and this was her parting shot to me.

Tears sprang to my eyes as I watched her board the bus. Logically, I know kids say these kinds of things to their parents all the time when they are angry and full of youthful drama. But on a purely emotional level, I was devastated, and it didn’t take much soul-searching to realize why.  Every day when I send Noelle off to school, I am putting her life in the hands of people who are virtual strangers. The people who work at her school are, without a doubt, kind, well-meaning and professional, but they are effectively strangers… Read the rest of this entry »

Just My Type: The Cat Knocked Over the Christmas Tree

A Merry Little Christmas

The cat knocked over the Christmas tree.

I realize there is probably nothing too unique about those seven words. People with pets deal with this kind of thing every Christmas. We even have dealt with it before; years ago when we had both a dog and a cat, our tree was tied to a wall via some twine and a couple cup hooks.

But for some reason that didn’t occur to us this Christmas, the first we are celebrating with our new cat in our home (Last Christmas, the first year we had him, we spent Christmas in Florida and didn’t do any decorating.). Maybe it’s because we had other things on our mind – mostly Noelle’s new health issues. Or maybe it’s because I debated whether to even put up a tree this year – mostly because Noelle’s new health issues have not put me in a happy jolly mood… Read the rest of this entry »

Just My Type: Counting Blessings Instead of Burdens

Thankful for Her Smile

Three years ago, I wrote a column for the weekly newspaper I was working for called “Thankful for her smile.” It was six weeks after my daughter Noelle’s type 1 diabetes diagnosis, and I chose to share the news with my readers in a pre-Thanksgiving column that tried to be positive, focusing on what I was thankful for instead of what I was angry about.

As this pre-Thanksgiving column was percolating in my head over the last couple of weeks, I had decided to revisit the idea of counting my blessings instead of my burdens. As life seems to enjoy throwing curveballs at me, however, that idea was almost derailed this week with yet another devastating health issue…  Read the rest of this entry »

Just My Type: Helping Others with Type One Diabetes

And Then There Were Two

The news hit me like the proverbial ton of bricks.

A little girl in my daughter Noelle’s circle of friends had been fighting to recover from diabetic ketoacidosis at Baystate Medical Center recently, and now is an officially confirmed type 1 diabetic. The email from her parents came on a quiet Sunday morning in late September, just two days before we were to mark the third anniversary of Noelle’s type 1 diagnosis.

I was not prepared for this. While I had always wished for the support of another local diabetes family, I guess I always assumed it would come by someone moving into town, or meeting someone I hadn’t known before. I never in a million years thought about it coming in the form of a new diagnosis of another innocent little girl whom we already knew…

Read the rest of this entry »

Just My Type: When It’s Not Diabetes

Nothing Left to Give

Diabetes has a way of crowding out everything else in life. Nowhere is that more true than with childhood illnesses and injuries.

You see, even though my daughter, Noelle, has type 1 diabetes, she does have normal kid problems. Sometimes that’s hard to remember, and sometimes it’s even harder to deal with. It may sound strange, but I dump so much time, energy and anxiety into caring for her diabetes that I have nothing left for the bleeding scratch on her knee: “Oh, it’s fine, go hold a tissue on it.”

Read the rest of this entry »

Just My Type: Judgement and Misunderstanding of Type 1 Diabetes

What’s in a Name

I have this fantasy in my head: Next time someone asks my daughter, Noelle, about why she is pricking her finger or wearing an insulin pump, she will reply, “I have organ failure.”

Putting aside the fact that I would much rather have other fantasies in my head, I am embracing this one since a recent visit to the psychologist in Noelle’s pediatric endocrinologist’s office. The psychologist is just one other resource offered by the office to address the complete needs of a child with type 1 diabetes; last month we visited the nutritionist to learn that fast food really isn’t all that good for you. I know, shocking…

Read the rest of this entry »

Just My Type: Summer Camp with Type 1 Diabetes

Camped Out in the Parking Lot

My husband and I spent the last two weeks sitting in our cars for six hours a day. That’s right, just sitting. Not driving. Sitting. In the parking lot of Lenox Memorial Middle-High School while my daughter, Noelle, was at Shakespeare & Company’s Riotous Youth summer theater camp.

Yes, it was as exciting as it sounds.

As I have mentioned in previous columns, Noelle’s type 1 diabetes presents an extra challenge in the summer: whether or not to let her go to any camps. After all, many camp facilities don’t employ full-time nurses who could help Noelle manage the disease, and even if they did, the learning curve on managing Noelle and her specific needs and brand of insulin pump, etc., would take more time than the week or two of camp. So what’s a parent to do?…

Read the rest of this entry »

Just My Type: New Babies. New Beginnings.

Here’s to New Beginnings

I can’t wait to meet Jean’s daughter, to hold her, to embrace the innocence of a blank slate and to pray that her life will be blessed with health and happiness.

My best friend Jean is eight and a half months pregnant with her first child. I’ve known Jean for almost two decades, since her first week at college when she walked into the office of the student newspaper of which I was editor and said she wanted to be a reporter. Our friendship has ebbed and flowed with life over the years, as some of the best friendships do, but I know I can always count on her and her on me.

So it was with nothing but excitement that my daughter, Noelle, and I attended her baby shower last weekend. Thrown by her mother and sister-in-law, it was a pretty extravagant affair, and Jean was showered with onesies and hooded towels galore. Noelle was having fun running around with Jean’s cousin’s daughter, a year younger than Noelle, a girl with whom she has played many times before at Jean’s family parties. The atmosphere was festive and happy and hopeful.

But I couldn’t help but think back to my last month of pregnancy with Noelle…

Read the rest of this entry »

Just My Type: Tight Schedules

Another year wiser?

The fact that it was my birthday made the day even more ridiculous.

It was Friday, April 26. Instead of going on the surprise getaway to Cape Cod that my husband tried to plan, I had to work. I work for the Girl Scouts, and one of my tasks that day was to deliver a prize to a girl in a troop meeting in Sheffield. Here’s how I had it planned: I would pick my daughter up from school at 3:05, be in Sheffield by 4:15, be out of Sheffield by 4:20 and back in Williamstown by 5:30, when Noelle’s baseball practice was schedule to start. I had the prize ready to go (I purchased a helium balloon earlier in the day to attach to it), I had snacks for Noelle to eat in the car and her baseball clothes ready to go.

I could do this.  Read the rest of this entry »

Just My Type: Organized Summer Activities

Camped Out

Now that spring seems finally to be here, my thoughts have turned to summer. Summer camp, that is.

This is difficult time of year for us. My daughter, Noelle, was diagnosed with type 1 diabetes when she was 4 1/2, about the time parents start thinking about organized summer activities for their children. The first summer, before she entered kindergarten, wasn’t too bad. We allowed her to go to half-day camps at her nearby preschool for a couple weeks and not much else, and that worked out okay.

Last summer, the summer between kindergarten and first grade, was much more difficult. She kept hearing of all the cool camps out there for kids, plus I had begun working for the Girl Scouts, and camp is a big thing for the Girl Scouts. Luckily we were able to enroll her in two half-day camps at her karate studio and a half-day camp at her dance studio, she participated in a children’s theater production for one week and the creme de la creme: one week of full-day Girl Scout camp that she was allowed to attend because I was allowed to work there for the week. Between that and season passes to Six Flags, she kept pretty busy…

Read the rest of this entry »

Just My Type: Putting Up a Fight

Putting up a Fight

Having a marital spat in the middle of a chain department store is not my idea of fun. Yet there my husband and I were, 7-year-old Noelle in tow, marching through the store, hissing at each other in a not-so-very-nice fashion. – It’s just one more way that diabetes brings out the worst in us.

You see, it wasn’t just a run-of-the-mill dispute. No, this fight was about a fundamental difference of opinion regarding the care of our daughter’s type 1 diabetes.

How can two relatively intelligent people who both love and cherish their daughter be so far apart? It’s truly mind-boggling. When Noelle was first diagnosed in 2010, a friend whose child has autism warned me what issues like that can do to a marriage. He was right. Nothing has been run-of-the-mill since.  Read the rest of this entry »

Just My Type: Depending on Alarm Clocks

No Cause for Alarm

A year ago I won an alarm clock in a church raffle.

I know … exciting, right?

It actually was. It was a very cool alarm clock. It was shaped like an egg, flashed different colors and had many features like a timer, date and temperature. My daughter, Noelle,picked it out from a pile of items we could choose from in the raffle.

She knows how much her dad and I depend on alarm clocks.

You see, since she was diagnosed with type 1 diabetes, alarm clocks are literally our lifelines. Every night, we get up at least once in the middle of the night to check her blood glucose levels. On a good night, we only have to get up once. On a bad night … well, sleep is a luxury we just can’t afford.

Nighttime is a very dangerous time for kids with type 1 diabetes. Blood glucose levels can drop dangerously, and most kids, especially young and relatively newly diagnosed kids, don’t wake up when that happens. So many type 1 parents chose to test during the night to make sure their kids stay safe.

That has been our reality since the diagnosis came two and a half years ago. It’s like having an infant again and never getting a full night’s sleep. It makes for perpetually tired parents. It’s not natural for people to wake up in the middle of the night every night.
Hence the need for the alarm clocks.

We have three in our bedroom. One is the main clock, set to whatever time we need to get up in the morning. The second is a nice  travel alarm clock I bought for my husband a few years ago; that one sits on his nightstand. The third, of course, is the egg, which sits on my nightstand. The travel and egg clocks are set to go off within a few minutes of each other. Why? So if we sleep through one the second one will wake us up. So if we forget to set one the other will still go off. So if the batteries die in one the other will still go off.

The system is not foolproof. Sometimes one clock does not go off. Sometimes neither clock goes off. And sometimes we don’t get up no matter what.

Last week, the night before Valentine’s Day, Noelle had an up-and-down evening, rebounding from a pre-dinner low to pre-bedtime high. I gave her a little “bolus,” half a unit of insulin through her insulin pump, before I went to bed and asked my husband, who was up late working, to check her an hour later before he went to bed. He did and she was fine.

At 2 a.m. the travel alarm clock went off, and my husband got up and did the test. In my sleepy haze I heard him go running downstairs. I knew what that meant: Noelle was low and he was getting the maple syrup, which is how we treat middle-of-the-night blood sugar lows. I dragged myself out of bed to help him pour the syrup down her throat. “My alarm is set for 3 a.m.; I’ll get up to re-test,” I mumbled as we both fell back into bed.

The next time I opened by eyes it was 6:11 a.m. Read the rest of this entry »

“Special Treatment” for Children with Disabilities

Special Treatment

I would gladly stand in the longest line Disney World could ever throw at me, and smile the whole time, if I could take diabetes away from my little girl.

Those words mean different things to different people. Raising a child with a serious disease, I’ve come to embrace everything that’s positive about these two words.

That puts me at odds with lots of people, including with my own husband, who never wants our daughter to feel “different” because she has diabetes — even though she is.

The issue first came up the summer after my daughter Noelle was diagnosed, when we accepted an invitation to the amusement park for the day. I panicked at this new challenge and hit the Internet to see what other parents of type 1 kids do in the same situation. It turned out that many amusement parks offer special passes for people with a whole range of disabilities that basically allowed them to skip some of the longer lines. The theory was that blood sugar levels can go haywire while waiting in the heat in a long line.

It made sense to me, and as the parent accompanying her, I was thrilled at suddenly having something that might make the day go more smoothly. But my husband was appalled: How could I accept a pass that would announce that our daughter had a disability? Since when was diabetes was disability?

Our internal family dispute was mirrored by the blog chatter. Some type 1 parents would not dream of accepting a pass that would bump them to the front of a roller coaster line simply because of diabetes. Other type 1 parents whose children were affected by heat and long waits were relieved to have those passes. Some used them freely. Others used them only as needed. The discussions went round and round: Is diabetes serious enough for diabetics to be given “special treatment?”

Since that first summer, I have faced the same battle many times. Some of those battles were entirely of my own making: I was irritated when the principal of my daughter’s school would not let me in the building five minutes early to see the nurse, because I wanted “special treatment” that parents of healthy children didn’t get. Some of those battles were the product of other people’s imaginations: One parent at karate was so sure the instructor had slipped my daughter through a belt test because he felt bad for her that they actually challenged my daughter, passive-aggressively accusing the first-grader of “special treatment.” And some have to do with what’s legal and ethical: Should a child with diabetes have a 504 disability plan at school when it will potentially give them “special treatment” like taking a break in the middle of a standardized test?

I gritted my teeth over being denied early entry to school but let it go. I avoid the karate parent whenever possible. And I went ahead and pushed for the 504 just in case.

But after that first amusement park trip, where the special pass made my daughter very popular with her friends when they were able to skip a few lines (but not the one for the water ride that really worried me, the one where we could not bring any items like her blood glucose kit with us in an hour-plus-long line; we were forced to miss that ride), I never asked for the pass again – and now my family has season passes and we go all the time and it’s no big deal. And even though I researched the policies when we planned a trip to Disney World over this past Christmas break, I opted against even asking for that “special treatment.”

That’s not because I don’t believe in the idea of the passes; I wholeheartedly do. I just found that the heat and length of the lines at the amusement parks didn’t affect my daughter in any kind of negative way, so I didn’t need them. And that’s what I embrace about the concept of “special treatment”: I love that there are times, really really important times, that people are going to give my daughter a break because she lives with his devastating, life-altering disease. She IS different because of her diabetes, and I accept that. It doesn’t define her, but it is part of who she is now.

And this is what I say to people who fault this “special treatment”: I would gladly stand in the longest line Disney World could ever throw at me, and smile the whole time, if I could take diabetes away from my little girl.


ABOUT THE AUTHOR

Rebecca Dravis

Pittsfield native Rebecca Dravis is a former journalist who lives in north Berkshire County with her husband and daughter in Williamstown, MA. In Just My Type Rebecca shares her experiences as a parent raising a child with type one diabetes. – Check out Just My Type on the third Monday of every month.

[Photo credit: (ccl) Brett Kiger]

Just My Type: Finding Normalcy During Holiday Meals

Chew On This

My six year old daughter, diagnosed with type 1 diabetes less than 2 years ago, was thrilled when an antipasto platter was served at a recent holiday meal. She absolutely loves cheese! And since her diagnoses, I love for her to eat cheese, too. Why? There are no carbs in cheese! So I say. “Eat up, kiddo!”

This past Thanksgiving, the cheese bit back.

In our home, Thanksgiving has been a holiday that focuses on the three Fs: family, football — and food. Because of that, it is the second of the five late fall/early winter obstacles our family must hurdle while raising a child with type one diabetes.

The first is Halloween, which probably goes without saying (Just how many carbs ARE in a fun-size candy bar?). The second is Thanksgiving, with its all-day noshing of carb-laden food. The third is my daughter Noelle’s birthday in mid-December, which not only presents nutritional challenges but also social ones, as it is so hard to pull the birthday girl aside to prick her finger for a blood sugar test in the middle of fun and games. The fourth is Christmas (see Thanksgiving). And the fifth is New Year’s Day, which was, long before Noelle came along, a day my husband and I dubbed the “Day of Decadence,” where we sit around in our PJs all day, watch football and eat food we make ourselves in our deep frier. — ‘Tis the season!

We survived this past Halloween. Somehow we made it through her birthday party, mostly because she doesn’t like cake, though she doesn’t like to admit she doesn’t like cake because she feels like she’s the only kid in the world who doesn’t like cake (I have to admit that that makes me sad, because I think the reason she doesn’t like cake is because it’s extremely difficult to correctly match insulin to cake and frosting carbs and thus having cake usually leaves her with a high-blood-sugar tummy ache.). And Christmas and New Year’s Day this year promise to be a little more laid back than usual thanks to a family vacation that will leave us traveling on those holidays.

So that leaves Thanksgiving, where Noelle was thrilled when an antipasto platter arrived on the table that day. She absolutely loves cheese! And since she was diagnosed with diabetes, I love for her to eat cheese, too. Why? There are no carbs in cheese! So I say: Eat up, kiddo, no need to stop to bolus insulin. You might get a little … “bound,” to put it delicately, if you eat too much, but have at it!

I watched her select a piece of cheese and eagerly pop it into her mouth. Despite the food issues that diabetes presents, Noelle is always a really good sport at trying new or unfamiliar food, something I admire about her. She scampered off, but within a few seconds she was standing in the hallway with tears in her eyes motioning for me to come to her.

“What’s wrong?” I asked her. She was crying. “I didn’t like this cheese,” she said. “OK, you don’t have to eat any more of it,” I said. “But it’s still in my mouth!” she wailed around the lump in her mouth.

Good grief. I ran back to the dining room, grabbed a napkin and instructed her to spit it out. Which she did, along with a little bile.

“I usually love cheese,” she sobbed. “What WAS that?”

As I found a garbage can in which to dispose of the offensive cheese, I experienced a flash of normalcy. For once since she was diagnosed two years ago, a food issue had nothing to do with portion-controlling and carbohydrate-counting and insulin-matching. This time, it was normal, healthy almost-7-year-old behavior, and as repulsive as the half-chewed cheese in the napkin was, I loved it.


ABOUT THE AUTHOR

Rebecca Dravis

Pittsfield native Rebecca Dravis is a former journalist who lives in north Berkshire County with her husband and daughter in Williamstown, MA. This is the debut of a monthly column where Rebecca will share her experiences as a parent raising a child with type one diabetes. – Check out Just My Type on the third Monday of every month.

What is Type 1 Diabetes: Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. It occurs when the body’s immune system attacks and destroys the insulin-producing cells in the pancreas, called beta cells. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D, and-at present-nothing you can do to get rid of it. [Source: JDRF]

[Photo credit: (ccl) Gust

Just My Type: Craving Support in Raising a T1D Child in the Berkshires

Happy Anniversary to Us

Families can make help a difference in the lives of millions of families affected by type 1 diabetes (T1D) by participating in a JDRF Kids Walk to Cure Diabetes. Participating youth learn about T1D while raising funds to find a cure. To find a fundraising walk nearest you, visit the jdrf.org. — Want to learn more about T1D? Check out this education video about T1D signs, symptoms and treament, featuring youth with T1D.

I remember clearly my daughter’s last carefree moment of childhood… Noelle was 4 years old, and my husband and I had picked her up early from preschool on a Friday to bring her to the doctor’s office. I found her playing in the classroom, absorbed in a game of blocks. When we called for her to get her things to come with us, she ran to us, calling to her friends over her shoulder as she left, “I have to go now. I have to go the doctor. See you Monday!” She said it with the innocence of a child not knowing her life was about to change in ways none of us could imagine.

The date was Oct. 1, 2010. I remember it as if it were yesterday, even though we just marked the two-year “anniversary” on Oct. 1, 2012.

Hours after leaving her preschool, Noelle was diagnosed with type 1 diabetes. Her blood glucose was 550; normal blood glucose is 70 to 120. Luckily, we brought her in when we did and she was not in immediate danger, and after a trip to the emergency room for the first insulin shot of what already has been hundreds and what will be thousands more, we were sent home… It was the worse night of my life.

Until the next night, after a day spent at Baystate Medical Center learning how to keep my child alive, when the four-times-a-day shots started… Until the next night, when the exhaustion and tears of the day before caught up with all of us and the reality of the situation sank in… Until every single night – and day – after that, for the last two years, 24 hours a day, seven days a week filled with carb counting and finger pricking and insulin shots and watching and waiting and worrying that tomorrow morning will be the morning Noelle doesn’t wake up.

So far, she has woken up with a smile on her face every morning, handling the reality of her life better than anyone could expect.
I wish I could say the same for me. Living in the Berkshires, support has been scarce. There is no support group for children with diabetes or their parents. There is no local network, no local organization, no local connections. Last year we did a diabetes walk in Albany, NY; this past weekend, we walked in the JDRF Walk to Cure Diabetes at Six Flags New England in Agwam, MA. I have met and occasionally talked to the mother of the only other child in our town of Williamstown with diabetes.

I crave that support, so much so that I subscribe to a couple of diabetes blogs, though I am not typically a blog reader and neither of those families are local, either. And I recently put aside my nervousness about talking to a stranger when I heard the mom behind me at Gymfest of the Berkshires say to her daughter, “How does your sugar feel?” I turned to her a moment later and said, “Does your daughter have diabetes?” What followed was an hour-and-a-half conversation with her during open gym about her life of diabetes management, with her keeping her second-grader alive and me keeping my first-grader alive.

Because in the end, that’s what it’s about: keeping our children alive and as healthy as we can, despite this horrific disease that has no cure in sight, that steals children’s carefree lives on a daily basis and that steals their actual lives more than I want to admit.

Two years ago this month, my family’s lives changed forever. Noelle never will have that carefree childhood again, and there are days I want to just scream and hit someone or something over the unfairness of it all. There are days I still cry for no reason; I actually broke down in church a couple Sundays ago when Noelle had to sit in the back and eat a package of Smarties to bring a low blood sugar up during the homily. There are days when the gravity of the situation makes me want to curl up and die.

But there are days when I feel I can do some good, like educating one person who doesn’t understand type 1 diabetes, or like raising money for the walk at Six Flags, or like someday starting that support group that’s missing from our area.

Starting our third year of living with type 1, I hope to have more of those kinds of days.


ABOUT THE AUTHOR

Rebecca Dravis

Pittsfield native Rebecca Dravis is a former journalist who lives in north Berkshire County with her husband and daughter in Williamstown, MA. This is the debut of a monthly column where Rebecca will share her experiences as a parent raising a child with type one diabetes. – Check out Just My Type on the third Monday of every month.

What is Type 1 Diabetes: Type 1 diabetes (T1D) is an autoimmune disease in which a person’s pancreas stops producing insulin, a hormone that enables people to get energy from food. It occurs when the body’s immune system attacks and destroys the insulin-producing cells in the pancreas, called beta cells. While its causes are not yet entirely understood, scientists believe that both genetic factors and environmental triggers are involved. Its onset has nothing to do with diet or lifestyle. There is nothing you can do to prevent T1D, and-at present-nothing you can do to get rid of it. [Source: JDRF]

Cell Phone for a Six Year Old

The Right Call

With type one diabetes I haven’t allowed my daughter to go down the road yet, let alone a sleepover with friends. And now … well, the invitations likely won’t flow anyway now that I’m probably going to be known as “that parent,” the one who gave her 6-year-old a cell phone.

“I need a cell phone for my 6-year-old.”

The words sounded as absurd as I feared they would as I stood defiantly in front of the Verizon guy at BJs in Pittsfield. After all, what kind of crazy mom buys a cell phone for a first-grader?

The Verizon guy, though, barely blinked. “What do you need?” he asked in a casual tone that made me wonder if he has seen this situation before.

He didn’t ask, but I felt compelled to explain all the same. “She has a medical condition and I need her to have a phone so she can call home if she needs to from wherever she is,” I said.

This was a huge step for me. I barely use my own cell phone, and I have been known to publicly complain about the rude, self-centered generation we are raising with their noses buried in the latest text message.

But I put those feelings aside to give my daughter Noelle a phone — and some independence, despite her type one diabetes.

We tested out the theory before the big purchase by sending her to karate camp a half-mile away from our home in Williamstown with a spare phone and instructions to call after she tested her blood glucose at snack time. It worked perfectly, but it was a bittersweet celebration when she came home from camp and got her high-fives.

Even taking the diabetes out of the equation, letting go of a young child is not easy. As parents, we watch them crawl and toddle and skip and jump farther and farther away from us as they grow. Which is how it’s supposed to be, of course, but that doesn’t mean it’s easy.

Add a serious medical condition to the equation, and allowing for the normal progression of independence becomes an extreme challenge. Some of Noelle’s friends are having sleepovers; I haven’t allowed her to go down that road yet. I would have to come along, and who wants me camping out on their couch for the night? Or I would have to host every time, and who wants other kids in their house all the time?

And now … well, the invitations likely won’t flow anyway now that I’m probably going to be known as “that parent,” the one who gave her 6-year-old a cell phone, which is sure to prompt lots of “but Noelle has one” whines from her friends.

“Don’t you dare tell anyone you sold me a phone for a 6-year-old,” I threatened the Verizon guy as he rang up my purchase, a pay-as-you-go basic flip phone that he helped me program our numbers into as speed dial choices — and helped me block texting, music and a few other features that a smart kid like Noelle might be able to figure out with time.

Noelle proudly carried her new phone around BJs as we continued shopping. I let her test it in the car with a call to her Auntie Missy and take pictures on it to her heart’s content.

On the ride home, I turned and smiled at her as she practiced turning the phone on and off.

“I’m so proud of you,” I told her. She smiled back and flipped the phone closed.


ABOUT THE AUTHOR

Rebecca Dravis

Pittsfield native Rebecca Dravis is a former journalist who lives in north Berkshire County with her husband and daughter in Williamstown, MA. In Just My Type Rebecca shares her experiences as a parent raising a child with type one diabetes. – Check out Just My Type on the third Monday of every month.

[Photo credit: (ccl) fensterbme]

Just My Type: Raising a Child with Type One Diabetes

Getting Away From it All

My daughter’s diagnosis with type one diabetes when she was in preschool was devastating and life-altering. Gone were the carefree days of letting her eat whatever and whenever she wanted. Gone were the days of leaving her with a babysitter — and thus gone were the days of my husband and I having time to ourselves… Fast forward to this summer, and while our lives revolve around the care of our daughter, my husband and I are slowly taking advantage of opportunities to get away from it all. (Photo credit: Sienna Wildfield)

When does the offer of a night away with your husband make you reach for the antacids instead of the lingerie? When you’re leaving behind a child with type one diabetes.

My daughter, Noelle, is a bright, rambunctious 6-year-old who is eager to enter first grade in just a few days. Only in one way is she not a typical little girl: When she was 4½, in her first month of her last year of preschool, she was diagnosed with type one diabetes.

The diagnosis was devastating and life-altering. Gone were the carefree days of letting her eat whatever and whenever we wanted her to. Gone were the days of cabinets filled with normal household goods and not medical supplies. Gone were days of unblemished baby skin, which was replaced by finger-stick callouses and syringe pokes and infusion-set adhesive burns.

Gone were the days of leaving Noelle with a babysitter — and thus gone were the days of my husband and I having any time to ourselves.

Fast forward to this summer, when a friend offered us tickets to the Red Sox-White Sox game at Fenway Park. We hemmed and hawed about the arrangements but finally decided to go once my mother agreed to take Noelle for the night.

My mother is the only person we trust Noelle with, mostly because she has type two diabetes and thus is familiar with finger-sticks and insulin delivery. Still, type two diabetes is a very different beast than type one, and even my mother finds it all very confusing and complicated. The one other time we left Noelle with her overnight, she remarked to us the next morning, “I don’t know how you two do it.”

“It” is counting every carbohydrate that goes into her mouth. “It” is checking her blood sugar on average 10 times a day, including at least once in the middle of the night. “It” is laying awake praying that the maple syrup we just poured down her throat brings her blood sugar up so she doesn’t go into hypoglycemic shock, or the insulin we just given her brings her blood sugar down so she doesn’t go into diabetic ketoacidosis.

“It” basically is living a life that revolves around a heartbreaking disease that struck our beautiful, healthy little girl out of the blue and changed our lives forever.

Sometimes I don’t know how we do it, either. But we do it because we have to, and every once in a while, we manage to sneak away to someplace like Boston, where despite missing the first inning of the game because of three accidents on the Turnpike on the drive from the western part of the state to the eastern part of the state, we had a lovely night out together. The Red Sox won 10-1.

Sure, the night was interrupted by several calls to my mother to confirm Noelle’s well-being, and my mother ended up calling in sick to work the next day after she spent a sleepless night worrying and checking blood sugars, but in the end, the excursion was a much-needed one for my relationship with my husband and my own sanity.

In the end, I didn’t need the antacids. I won’t tell you about the lingerie.


ABOUT THE AUTHOR

Rebecca Dravis

Pittsfield native Rebecca Dravis is a former journalist who lives in north Berkshire County with her husband and daughter in Williamstown, MA. This is the debut of a monthly column where Rebecca will share her experiences as a parent raising a child with type one diabetes. – Check out Just My Type on the third Monday of every month.

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