Siblings Series: An Excerpt from Balancing Diabetes

At our Friends for Life conferences, we bring focus to the sibling experience, and we’re very excited to highlight some of their perspectives through our Siblings Series.  In this article, we’re sharing an excerpt from CWD board member Kerri Sparling‘s book, Balancing Diabetes, about Siblings with Diabetes.

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I don’t have a clear recollection of life immediately after diagnosis, but I know back in 1986, food choices ruled the roosts of diabetes households.  Once the vials of insulin moved into our refrigerator’s butter compartment, gone were the Twinkies and Ring Dings and Yodels (and other snack foods comprised of a half gram of actual nutrients and then a whole pile of crap).  Our eating patterns changed as a family and Diet Pepsi and food scales replaced the snack cupboard of days gone by.  My mother hid the ice cream sandwiches in the hollowed-out box of broccoli in the freezer.  She had packages of E.L. Fudge cookies hidden between the sweaters stacked in her closet.  She was a food-hoarding squirrel, with delicious treats in every obscure corner.

I viewed this as a clever approach that removed a lot of temptation (and also presented some very furtive treasure hunts with tasty rewards), and one that helped to keep me safe and healthy.  But for my brother and sister, both with perfectly capable pancreases, the lifestyle change wasn’t necessary.  Didn’t they get to have snacks, still?  (My brother confirmed that he, too, was searching for the “good snacks” after my diagnosis.  “I had to look in the freezer for cookies and above the broom closet for the special sugary cereals,” he said.)

What I failed to realize then is that my diabetes didn’t have to be my siblings’ diabetes.  There was so much about their lives as the siblings of a child with diabetes that I couldn’t even wrap my head around.  I didn’t know what it was like to have your sister come home from the hospital, now playing host to something no one could see, and garner so much attention (for better or for worse).  I’ve talked to some siblings of kids with diabetes and heard about the guilt.  “I felt bad for wishing I was sick, too, because I was jealous of the attention.”  Or the worry.  “Was I going to get diabetes, too?”  Or the anger.  “I am sick of her diabetes being the sole focus of our family.”  Or, just plain fear.  “Will diabetes hurt my sibling?”

My brother, Darrell, was thirteen when I was diagnosed with diabetes, and old enough to remember some of the details that I can’t recall.  “I remember Dr. L [our pediatrician] coming out of his office, the one with the patterned wallpaper that had giraffes and monkeys on it, and he was holding a little plastic cup with what was your urine sample.  We had both gone for check-ups on the same day.  He told Mom that he wanted to do some additional testing for you, so Mom dropped me off at soccer practice and proceeded to take you somewhere for tests.

“I remember being picked up from soccer practice and leaning through the open passenger side window. You were in the back, dressed in a little white knit pom-pom hat and looking rather dour. You looked very small to me.  I believe it was there that Mom told me what the verdict was, before I even got into the car. Seeing what type of memory it has indelibly put on my mind, whether it’s truly accurate or embellished by the passing of time, I knew it was something major. I knew it was a ‘difficult time,’ and it burned right in.”

My little sister, Courtney, was only five when I was diagnosed, so as far as she is concerned, I’ve always had diabetes.  “I was so little when I found out that you were diagnosed with diabetes.  All I remember is Mom and Dad telling me that you were sick.  I didn’t know what diabetes was until I was a little bit older, and could understand better.  At that time, they told me that you had to test your blood sugar and then get a shot.  I thought it was an allergy shot,” she said, remembering her own experiences as a kid with severe allergies.  “But Mom said it different, that you were injecting a special medicine called ‘insulin.’”

Laura Watson was in fifth grade when her sister, Jacquie, was diagnosed.  “I was in the fifth grade; Jacquie was in the seventh. It was fall. My mom was encouraging Jacquie to eat as much as possible because of recent and dramatic weight loss. I remember standing in the pharmacy section of the local grocery store with my mom to pick up ketone strips. Shortly thereafter, Jacquie was just kind of gone and I got updates through my parents. A lot of what I remember about those updates involved oranges and syringes and reassurances that Jacquie was going to be okay.  That year in school I had all the same teachers Jacquie had two years before. It was their reaction to the news of the diagnosis that made me realize what a big deal it was.”

My brother did realize that diabetes was something “big,” but at the same time, it wasn’t a topic of much discussion.  “We have only talked about things that impacted you negatively, like when there was a setback or an issue. I don’t believe we’ve ever had a long, positive conversation, where you got a new pump or you had a good checkup.”

Like Darrell, Laura’s memories of growing up alongside a sibling with diabetes weren’t rooted in deep discussions and serious chats about disease management and its influence. “I don’t remember it being an intrusive force, but I don’t think I filed it under ’no big deal’ either. Rather, it always seemed to be something that Jacquie had under control, even if it meant a lot of work to keep it under control. I suppose I always assumed that my big sister knew what she was doing no matter what she was doing. Whether it was a decision to perm her hair, tight roll her jeans, or give herself an injection where and when, I applied the ‘big sister’ rule.”

“I surely remember Jacquie having lows and highs and in some cases being exhausted the next day from a middle-of-the-night low,” added Laura, recalling these moments.   ”If there were cereal bowls and/or almost-empty Coke cans around when I got up in the morning, I could usually guess that Jacquie would be sleeping in.”

Darrell also had memories of my hypoglycemic aftermath, with only one, clear memory of watching me in the midst of a low.  “There were moments of fear, as I once was with you during a low and you told me that you saw car headlights coming out of your hands if you held them up to your face, like cars racing towards you on a dark highway. I had nothing to compare it to, so that was frightening.”

Funny thing is, I remember that symptom.  When I was a little kid, my hypo experiences were very heady and confusing.  I distinctly remember many lows where I’d see things, borderline hallucinations, and my fear of them was all-consuming.  One time, while our babysitter Kim was watching my brother, sister, and I, I remember sitting in the hallway with my back against the wall, screaming about those cars coming out of my hands.  I remember the headlights zooming towards me, and a panicky feeling that I would be hit by these cars.  It was irrational, but my brain was shifting the glucose reserves around, preserving the parts of my brain that were necessary for autonomic processes, such as breathing and the beating of my heart.  Rationale fell by the wayside as my body tried to make sense without glucose in my cells.

As bizarre as this feeling was to experience, I at least had an idea of when it was starting, and felt the relief when it began to end.  My brother and sister were left just to watch and wonder what the hell was going on.

“I think the strongest impact that diabetes has had on you is that you became very aware of your own mortality at a very, very early age. Here was something that had, and always will have, the potential of taking years from you, or your life itself if it’s not managed properly.  It’s an everyday cumulative tightrope,” said Darrell, when asked about how diabetes has affected our relationship.  ”Some people would take that and internalize it, where you took it and swung the momentum into a force of motivation.  Your siblings know how you think, being the closest thing to a ‘twin,’ and even though I know you are absolutely terrified at times, you’ll still face it head on.”

I also spoke with Jackie Singer, the twin sister of Mollie Singer, who lives with type 1 diabetes.  “When Mollie was diagnosed, it was as if I was diagnosed, and our whole family was diagnosed,” she said.  “We really did live, breathe, and eat as a family and that meant doing what Mollie could do when Mollie could do it. I never really worried about becoming diabetic, but there were many times when I wish I was, because then she wouldn’t have to go through what she had to go through by herself.

“Mollie and I were inseparable before she was diagnosed and we are the same way now, if not closer. When we were in school, we had all the same classes from kindergarten through college.  I was as knowledgeable as her about diabetes, so I was always by her side in case of an emergency. When we were little, we always shared a bedroom and there were so many nights I would stay awake to make sure she was okay.  It’s terrifying to think that one morning I would wake up and she wouldn’t.  I became her protector, always aware of changes in her breathing or sleeping, setting alarms to remind her to test her blood sugar at the appropriate time, grabbing juice and a snack for her when she couldn’t, and on two occasions before we were ten years old, setting up the glucagon kit and calling 911 while our Mom held Mollie in her arms after she experienced an episode with dangerously low blood sugar levels.” 

Diabetes is a disease that affects the whole family.  It’s not just the person who is receiving the injections or pump infusion sets or finger pricks who’s carrying the full weight of diabetes.  I don’t know if my brother and sister understood what diabetes meant when I was first diagnosed, and if any of us understood just how big the words “without a cure’ really were.   But I know that we learned about diabetes as a family, and dealt with it the same way.

There is that dance that occurs between my brother and sister and me, that weird discussion that never really takes place where siblings acknowledge that there is something serious in play, but no one wants to talk about it so plainly.  We didn’t sit around the breakfast table and run commentary on the state of my fasting blood sugars, but diabetes was always present and always somewhere on the table, literally and figuratively.  If it wasn’t my mother telling me to eat all of my breakfast because I already took insulin for it, it was her reminding me to grab my lunch bag.

There was one time—only once—that I felt angry.  Jealous of my healthy brother and sister and the fact that their days didn’t start and end with needles.  I was about fourteen years old and pouring out my angst into a fabric-bound journal, scribbling in it madly with a ball point pen.

“They don’t have to worry.  I’m jealous of that.  But I’m worried.  I’m worried about what my body will be like in like two decades, after all that time with diabetes.”

I thought I was alone in that worry.   It wasn’t until I was deeply immersed in sharing my diabetes life with the Internet that I truly grasped how much my older brother watched and understood.

In May 2005, my first evidence of diabetic eye disease started to show in the form of cotton wool spots.  Noticed during my yearly dilated eye exam, the doctor saw a few spots of swelling of the surface layer of the retina, when a part of the eye isn’t provided with enough oxygen due to a damaged blood vessel.  On the photos of my retina, it looked like puffy spider webs had taken up residence in my eyes.

Trying to acknowledge and understand this first diabetes-related complication, I wrote a blog post about the experience of “finding out,” and explained this new situation as best I could, while trying to remain positive.  Folks who were reading my blog at the time left very kind, supportive comments and their words soothed me, reminding me that this wasn’t “the beginning.”  But it was the comment my brother left that cracked the concept of complications wide open for me, assuring me that there was life to be found after this diagnosis, too.  And I’d better damn well seize it.

He wrote:  “When we were little in stature, the snow would cover our backyard like a puffy comforter. We would go out into the backyard to build snow forts, to go sledding, and to eat a majority of it.  We also had this thing where we would try to go as long as possible without damaging the ‘virgin’ snow, keeping to our trails and cordoned off zones, in an attempt to stave off ruin. We were a prepubescent SnowPeace, minus the trademark galleon.  It would only last for so long, before the snow would melt, no matter how hard we tried to preserve it with the no-walk, no-eat zones, but we knew there’d be more snow to cover up the previous damage we had done.  You’ve done so well, for so very long. The way you think and operate, I see a snowscape for you for a very long time … just don’t forget to eat some snow once in a while.”

Diabetes isn’t just a balancing act for the people living with it, but the people living near it and caring for people with it.  I never knew that my brother noticed what I did to take care of my diabetes, and I hadn’t thought ahead to how he would be impacted by any future issues.  He wasn’t feeling the highs and lows, but he saw them and they left an imprint on him, too.  Now that my brother has two children of his own, he’s mentioned that diabetes is on his radar as a parent, not just as a sibling.  “I can’t help but think that it was the simple roll of the genetic dice.  I keep tabs on my children’s weight and how many ounces of fluids they drink as opposed to how often they go to the bathroom,” he admitted, when I asked him about watching my niece and nephew for possible symptoms.

My sister agreed, confirming that my diabetes was an ever-present force, but something that lived on the peripheral of our lives.  “Diabetes didn’t really affect my childhood.  There were food changes that Darrell and I had to adapt to, with a lot of the sugary foods we used to eat being cut out.  Lucky Charms cereal was replaced by Cheerios.  Regular lemonade was replaced by that Crystal Light stuff.  We still ran around the house, though, and got into trouble.  Picked on one another.  Diabetes didn’t really change much, in that sense.”

Laura found herself in a similar situation as a sister, focusing on the hard-to-pinpoint effect that diabetes may have had on her life.  “I don’t feel it’s had an effect, but maybe that’s how it’s had an effect. Maybe Jacquie wishes that it were more front and center for me, or that I would have been more helpful when we were younger. She was kind enough to participate in a Science Fair Project for me in the 10th grade. She was my only participant. I basically made her check her blood sugar, jump on the exercycle that was in our kitchen, and check her blood sugar again. I made it to the State Science Fair that year and was placed next to participants who were proposing cures for cancer and ways to reduce the spread of oil in the event of an oil spill. I was surprised because, to me, it seemed I was just presenting a day in the life of my sister and her blood sugar levels. It’s not until we started to spend more time together as adults—even if just on vacation—that I feel I’m really understanding what a burden she’s been carrying around.”

So what do you do, if you’re the sibling of a person with diabetes?  It’s not your disease to manage, but it resides in a person you care deeply about, so it becomes yours, in a sense.   Jackie found that she could make the biggest impact, and be the best supporter for her sister, simply by being there for Mollie. “The comfort of knowing they’re not alone and that there’s someone who’s got their back no matter what, makes their struggles a little easier to bear. Sometimes that’s all anyone needs to help them get through the day.  For someone with diabetes, it’s always one day at a time.”

Laura and my siblings agreed with Jackie, but also mentioned the need to be there for the moments of acute need, such as low blood sugars.  “I don’t know if it’s best to make a big deal out of it or to try to make life seem more normal by not making a big deal out of it,” said Laura.  “All I knew to do was to be there with a juice box, if needed.” 

Darrell concurred.  “Be ready to help if a low or high occurs, as I know your greatest fear is to have that happen alone, with no one to assist when your body and mind aren’t cooperating.  Young siblings should know how to call 911 and/or parents if there are issues.  Other than that, treat them no differently. There’s so much change and so many routines a person with diabetes has to do to work to be healthy, I’m sure they’d appreciate just being a brother or sister to them.”

He added, “That and look beneath the frozen snap peas for the M&Ms.”