Ben's Story

I am responsible.
Although I may not be able to prevent the worst from happening,
I am responsible for my attitude toward the inevitable misfortunes that darken life.
Bad things do happen;
how I respond to them defines my character and the quality of my life.
I can choose to sit in perpetual sadness,
immobilized by the gravity of my loss, or
I can choose to rise from the pain and treasure the
most precious gift I have – life itself.
~~ Walter Anderson

This is the story of when our 9 year old son, Ben, was diagnosed with type 1 diabetes.
My purpose for writing this story is twofold:
1) to make others aware of the signs and symptoms of diabetes and
2) to remember, as a family, the emotions and circumstances surrounding Ben's diagnosis.

It was started on July 13th, 2010, when he was diagnosed, and finally finished on his 10th birthday, January 4th, 2011.
It is dedicated to our Ben for his bravery and for all children learning to live with type 1 diabetes.


Looking back now, I am trying to figure out if we should have noticed sooner...There were signs, quite a few, but almost always a logical explanation...

Ben's symptoms began to become apparent to us after our annual camping trip to Walton, for the fourth of July, 2010. He was thirsty there, really thirsty, but we all were. It was 90+ degrees, and inside our tent felt like 200 degrees.

He had been tired, and moody, losing his cool over seemingly silly things for a few weeks, I'd say. I thought it was our busy summer schedule, and ridiculously late bedtime...

He was hungry, too. Talking about food, alot...planning the next meal, putting in his requests, never seeming to get enough...growth spurt, perhaps?

He seemed to be spending alot more time in the bathroom, too. Heading in there quite frequently in fact...hmmm, must have been all that water he was drinking...A two hour trip home from Buffalo to visit friends included 2 urgent potty stops for him...that was out of character, for sure.
Then, the next day, Monday, when we traveled down to swimming lessons, 15 minutes away, and he became upset and nervous that he wouldn't be able to make it there without needing a bathroom (when normally he is able to go for most or all of his school day without using the bathroom for various reasons).
It was then that I knew....
I sent a text to Patrick, who said later on that he felt sick when he received it-I guess in the back of his mind, he knew, too. He arrived home that night with a dipstick for Ben's urine. The color was what we expected...he brought him to the health center right away, and it was confirmed. He said he could no longer look at the monitor when our baby's blood sugar reached 490....(normal is between 80 and 120). Instead he asked a fellow co-worker to stay with him while he went into the bathroom, lost his composure (and his dinner) and then put himself back together...
We could not and would not let Ben see us so upset. We couldn't let on to him the severity of his illness-it would be too much. He was an anxious kid on a normal day...and he's only nine...

When they arrived back home, all I had to do was look at Patrick's face....it was one that I'd seen only once before-when he realized the severity of my mother's condition, after falling victim to an aneurysm. A strange comparison in some ways, in others, not so much.

Somehow, shortly after arriving back home, he placed a call to University Hospital, and was able to get an appointment at the Joslin Center the very next morning with the pediatric endocrinologist. I scrambled around, trying to arrange for a sitter-I didn't want to miss any of what was going to happen to my baby boy next...Our natural reaction would have been to call Patrick's parents, right down the road, but in an ironic twist, they had left for Ireland that very day-for 12 days...a trip they had been planning for two+ years... We decided we would not share this news until they returned. We came to the conclusion that it was just easier for me to stay with Josh and Grace, so they could get an early start and head down to Syracuse. Not much sleep was had that night, but by 7 am, the 2 boys were ready, and on their way....

It is difficult to remember this day and what was done, except for the waiting, and the wondering and the longing for some news...I do remember saying a prayer that Patrick would call and tell me is was all just a big mistake...and this is a call we are both still waiting for, and say so to each other often...

I think we played in the foyer, waiting, for about an hour...peeking out the door often.




I don't honestly remember much else that day except how tightly I hugged my boy when they got home. They arrived with boxes, big boxes, of supplies, of insulin, syringes, blood glucose meters, alcohol swabs...and books, and pamphlets upon pamphlets-enough reading material to keep us busy for awhile.
And worksheets with formulas? What's this? Each time Ben eats, we need to count and keep track of every gram of carbohydrates, then plug it into one, sometimes two formulas before knowing how much insulin to give him. Not the technique that everyone uses, but the best method for keeping him under tighter control? Ok, done.
It was a daunting, no, overwhelming task for sure, for several weeks I'd say-the carb-counting, measuring, weighing, wondering...mealtime had been hectic enough with a toddler and a picky eater. And now it was, well, downright nerve-wracking...with little to no time between meals to relax, not think about/plan/count the next one....




And this poor kid-how much do we tell him? And where do we start? Go too high and you risk organ damage, even coma..and long-term consequences like blindness, kidney failure, limb loss, the list goes on....Go too low, and you may pass out, have a seizure. Or perhaps the worst part-It will be a balancing act to avoid the above for the rest. of. his. life.

And here's where I begin to skip around, become more scattered, in an attempt to include all that I need to...
Here are the positives: He is a cautious kid, he is a calculated kid, a regulated kid and a 'gadget' kid-not to mention a strong student-all things that will work in his favor-thank God.

And so began Ben's new life, of frequent finger sticks, and multiple daily injections, of counting carbs and worrying-for all of us. Never mind the toddler that decided to choose the same week to begin climbing out of her crib...or the high-energy, attention-craving younger brother...

It was summer, and as we assimilated these necessary changes into our family's daily 'normal', one thing became very important to us-helping Ben to continue as normal a life as possible. The soccer camp, the swimming lessons, the camping trips, and the get-togethers with friends...
Bring it on-all of it...I think....
Which leads me to another positive-that his diagnosis was in the summer. We were given the gift of time-time to figure it all out, time to adjust, time to grieve, before school started.
Not exactly what we had planned for our summer, but grateful for that window of time, nonetheless.
And so the summer went, with each activity and outing involving an exuberant amount of planning and preparing: insulin, wipes, diapers, syringes, toddler snacks, low-carb snacks, high-carb snacks, never mind the actual equipment for the activity at hand...

And then came the cookbooks-the wave of diabetic cookbooks from well-meaning friends and family...and the sugar free sweeteners-every kind under the sun. But what we realized pretty early on was that for this condition, type 1 diabetes, (a phrase Ben still has difficulty uttering), there really is no need to drastically change one's diet. We had insisted on healthy choices before all of this, and that is what we continue to do today. There is a common misconception that his condition can be controlled by diet, as type 2 can, but unfortunately that's not the case. He needs insulin now, and unless a cure is found, he always will.

Remembering back, another thing that was important to me was having him become autonomous with as much of the management as was possible for a nine year old. A tall order, I was sure, but if anyone was up to the challenge, I knew he would be. And he was. I also thought it might afford him a little more feeling of control, less helplessness. So, about a week after his diagnosis, he began checking his sugars independently. And he did great.
One of my first thoughts about independent injections was that i didn't want to push that issue, with everything else he had on his plate. Plus, we had high hopes of him receiving an insulin pump in a few months, which would eliminate the need for daily injections...but when I thought about the fact that he will have this condition for the rest of his life, I encouraged him to begin injecting himself-which he did, like a champ.
I was proud-we all were.
And then came a small step in his comfort level. First letting his medical alert bracelet be visible to friends, then walking around shirtless amidst friends despite bruises showing from his injections...and then a big step-giving himself an injection in front of friends. We were getting there-slowly, but surely.
And thankfully, before this, and even more so after finding out, he is surrounded by the best kind of friends that any 9 year old boy could ask for.

And then came my googling-always a dangerous thing. Seeking support, help, ideas to manage this new crazy that was our life. You know what I found? The strangest and most unsettling debate I've heard in quite awhile-those with diabetes and others with a cancer diagnosis arguing their point as to which one is worse to have..."at least cancer can be cured-diabetes you have forever..."
What in the world? This was preposterous to me-come on people! It all sucks-argument over.

Before we knew it, summer was over and it was time for school to start. And all that we had worked out, and become comfortable with, was going to change.
School lunches, blood sugar checks, and most importantly to Ben-how on earth to keep his condition a secret from most everyone in school. He was, and still is, as i write this, clinging to his nine year old view of normal, and despite all of my suggesting, brainstorming, etc, he continues to hold tight to this "secret" for now...
And, here's the point where we remain, months later...

Although a big step in early November-arrival of his insulin pump! Which decreased significantly the number of injections he needs-only 1 every 3 days instead of 4-5/day. And he is mastering it's complex workings much more quickly than we are...One of it's many pros is that it should help to keep him under tighter control...it's (unexpected) con is Ben's significant concern that it will be seen by someone in school...where the injections in the nurses office were more discreet...

So again, here we remain, with me desperate for him to reveal his secret, hopeful that it will relieve the undue worry that he carries...

And so, as we reflect on our life as a family, look at pictures, etc, there will always be a dividing line now...our carefree life before Ben's diagnosis, and life as we know it now. It's not worse now, just different, and it's hard not to worry...alot.

And so we will walk, and probably ride, to raise money, while we hold on to hope for change, and for a cure.

And in the meantime, we will hope that having type 1 diabetes will never limit Ben's boundless possibilities....We love you, Ben!

http://www.playlist.com/playlist/additem/648337681

A Little Bit Longer by Nick Jonas (about his type 1 diagnosis)




addendum: One of the most helpful books I've read was loaned to us from a friend and is titled "My Child Has Diabetes-A Parents Guide to a Normal Life After Diagnosis" by Karen Hargrave-Nykaza. It is well-written, touches on so many issues that families encounter, and includes a ton of great references...and for me, personally, the similarities in circumstances, family dynamic, etc were uncanny, and made it feel to me like i was reading my own journal.