Outreach

Our first month living with diabetes ended with our daughter, Lia, and Franca and I retreating for a weekend to a posh golf resort in the central part of our state. We were there to attend a statewide family outreach event sponsored by the Juvenile Diabetes Research Foundation and we had intended to take Krista too but that did not work out and so it was just the three of us. I say retreat because in the thirty days we had spent acquainting ourselves with this maddening disease it felt as if we were at war. All of us, Krista too. Maybe even especially Krista. We were fighting against food, against the choices of what food there is to feed us, and we were fighting against the essence of food itself, its composition and structure. We were fighting against insulin, a necessary component of life I had not given one single iota of thought to since high school biology class thirty years ago, which had been either compromised and killed or re-engineered into an uncompromising double agent, both friend and foe that acted in Lia’s best interests in one instance and turned quickly against her in the next. And we were fighting against depression, against anger, and acceptance. Against change.

I once read that if you are unhappy with something and you want it to change, you should first try and change yourself. This is the advice I would give my children whenever they approached me with a problem. I would ask: If you don’t like the way things are going, how could you change yourself to make it better. This usually elicited a roll of the eyes or a heavy sigh, not because they didn’t believe it, though they probably didn’t, but because the very idea of change is hard. It scares us and it has allies of its own, things with names like self-preservation, pride, hubris, that work both for and against us.

A day or so after we came home from the hospital, I was standing in the living room talking with Krista, who was laying on the couch. She’d been coughing and combating a sinus infection since before we’d brought Lia home. I asked her how she was feeling and she said to me, Dad?

I said, Yes honey?

What if I have diabetes?

I looked at her. You don’t have diabetes, sweetheart.

But what if I do?

I went over and sat down on the sofa beside her. She looked at me. It’s been a rough couple of days, hasn’t it? I asked.

She nodded.

I think what you have is just a sinus infection, I said.

She looked away. My answer had not satisfied her question and I knew even as I said it that it would not. Krista is twelve and on the verge of her own daunting life-changes. It is an exciting time for her and I feel sorry and helpless for her worry, and for the attention that’s been diverted from her for these past few weeks. Visiting her sister in the hospital, she had seen and heard enough to be wary. She knew how there were no warning signs. How a virus can sometimes trigger the onset. How diabetes was probably programmed in Lia long before she came down with a cold. How could it not possibly be the same for her? For any of us?

At the JDRF retreat we attended over the weekend, both Franca and I participated in TrialNet, an international network of researchers working to prevent, delay and reverse the progression of Type 1 Diabetes. As relatives of someone with type 1, we stand a greater chance of developing the disease and so we both felt that being part of the trial, which involves screening your blood for particular antibodies, was more beneficial than not. Three days later, both Krista and her brother John participated.

Without a cure though it’s just knowledge. But knowledge can turn to action and action to reassurance, which is what I desperately long to give her and Lia, and anyone else facing this horrid disease.

So I leave her on the couch with a hug and her thoughts and this: If it turns out you do get diabetes, I said, we’ll treat it with as much love and care as we’re treating it now.

She nods okay, but I know it’s not good enough. Not for her, not for me, not for anyone else. But at the moment it’s all I’ve got.

To donate and become part of the hopeful community searching for a cure to diabetes, please see here.


Fortunate 2 Know U

There were many ways our family and friends and other people we knew showed their concern for Lia and our family in the days following her diagnosis. The best one was the visit by John, Jenny and Jessie, who detoured their travel plans to see Lia in the hospital on the morning of Christmas Eve. They came bearing breakfast and gifts like the three gracious wise men. At the time we did not know we’d be spending another night in the hospital, almost two in fact — though Franca and I both suspected it — and knowing through experience with my father, who died in the night on the same day of leaving a hospital, there was no easy remedy for a patient wanting to leave when they thought they were ready, which by this time Lia desperately wanted. So our already depressed moods were made even more pensive as we neither wanted to be there nor knew if we were ready or not for the challenges of treating Lia’s diabetes at home.

But it was Christmastime and if hospitals are generally tragic places to begin with, being there on Christmas Eve would have made it almost heartbreaking were Lia not feeling better. You could see it in her eyes, in her face. The color was back, her eyelids no longer drooped, she could be prompted on occasion to smile. It wasn’t that she was not still severely sick, she was. Her blood sugars were elevated and she was still suffering from the Diabetic Ketoacidosis that had sent us to the doctor in the first place. But we were optimistic, despite our resignation to the reality of another night in hospital.

Such misfortune drew compassion from everyone, but especially of course from the nursing staff who understood better than most, better than patients even, the meaning of loss when being home with family on a holiday wasn’t possible. As it was we did what we could and made the best of the situation by spending the day with Lia.

I left around five that afternoon and drove home. Our older children were having dinner at an aunt’s and the house was empty and quiet. I poured myself a beer and got busy wrapping presents, a private event my wife and I annually observed on Christmas Eve. Tonight I was to do it alone. There was no flirting or playfulness, no sex. No glasses of wine. I rushed through it, slowing only to tie the bows as that was traditionally Franca’s job and I didn’t want to let her down. When John and Krista got home at nine I sat with them for an hour or so before they went off to bed and finished wrapping the gifts. Around midnight I loaded Lia’s stocking and Santa’s gifts into the van and drove back to the hospital. I slipped quietly through the corridors and into her room where Franca lay awake in the bed beside Lia, who was sleeping. I set the gifts in the corner where she could find them the next morning and drove home and fell into bed for a couple of hours before waking John and Krista. The three of us gathered around the tree. Absent was the usual excitement, the thrill of discovery of Santa’s delivery. We picked through our stockings and ate a quick breakfast and hurried on to the hospital, where Lia had already woken to the surprise that Santa had found her. She was happy and eager and needed no prompting to smile that day, we came home.

It is weeks later now that I write this and the emotion and dread of those days in the hospital has slowly evaporated. But of the friends and family who offered their love and support I am reminded daily of their genuine compassion, often through the actions of others as news of Lia’s diagnosis spreads, some of which are neither genuine nor compassionate, but taken in context seemed only designed to make someone else feel better. Such as the email my wife received last week. Sent by the mother of our daughter Krista’s best friend in response to hearing of our situation, it read: So sorry 2 hear about Lia.

At first I was angered by the trivial and insensitive manner in which she addressed her comment. So sorry 2 hear about Lia. As if what she’d come down with was a cold and missed a soccer game. But that’s how this thing comes at you, this diabetes. It so far off the radar that you have to believe there must be something wrong, that it must only be a cold, a virus. How else do you explain it?

And in Lia’s case there’s some precedence. About three years ago I brought her home from school complaining of severe stomach pain. Nothing I did reduced her discomfort so I took her to the doctor. Franca met us there. We were sitting in the waiting room. She walked up and took one look at Lia and asked had she been to the bathroom. Lia looked at me and then at her mother and shook her head. They went down the hall and came back a moment later all happy and smiles.

Everything better, I asked.

Lia grinned sheepishly. I guess I just had to pee

That’s what part of you is waiting to see come about. The moment of the truth, the answer. A short little stroll down the hall, and then all of this will be over.

But it won’t be over and the other part of you that is listening to the facts knows that it won’t be over and so reality awaits. If you have any fortune at all those you keep close to your heart will be waiting there to greet you.

To read other personal stories from people who’ve experienced juvenile diabetes, please follow the link. To donate, please click here.

Back to School

Two and a half weeks after Lia’s diagnosis she returned to school. The holiday break was a godsend, giving us time to get our arms around her diabetes, so by the time classes started back up we all had become lay experts in the field, at least in terms of counting carbs and dosing insulin. And Lia was ready to get back. She was eager to share with her third grade teachers and classmates the news of her diabetes and the grown-up manner in which she treated it. It was something Franca and I were anxious to have behind us too.

We had always been on good terms with the elementary school and we both liked her teachers very much, as did Lia too. But neither of us were sure what reaction if any the administration might have in helping us manage her treatment. Franca is a high school teacher at the same school but on a different campus and knew firsthand of the process as well as the planning, preparation and partnership it would require of everyone, especially of Lia’s teachers. So the first thing we did was schedule a meeting with the school for the Friday before students returned.

To prepare for the session, Franca read through and followed precisely the suggestions outlined in the Juvenile Diabetes Research Foundation’s School Advisory Toolkit. This guide, which can be downloaded from the JDRF website, offers a great many details and tools for parents and educators to use in developing a collaborative and thoroughly detailed plan. The toolkit was invaluable and made it much easier for us to understand and share with the school Lia’s specific needs.

As we expected, her teachers and the principal greeted us at the meeting with compassion and promised us their diligence in attending to Lia’s wellness. We spoke about diabetes and the war it had raged inside her pancreas and we helped them understand what was required of Lia and those responsible for her to ensure she’s receiving the care necessary to keep her safe, be it food, access to the bathroom, frequent blood sugar monitoring or insulin. We went over her daily schedule and the times of the day she would need to check her blood sugar and what symptoms to be on the lookout for in the case her sugar levels rose too high or fell too low. We gave them contact numbers and instructed them in the use of glucagon kit. We showed them the supply kit Lia would be using at school. We talked about the letter we were sending home to her classmates’ parents informing them of her diagnosis and we asked to come talk to the students themselves about diabetes, to which the school agreed, as they did to everyone of our other requests, including the creation of Section 504 plan, specific to Lia, outlining in writing the modifications and accommodations the school would provide in regard to her medical disability.

There was much more still to understand and talk about but when we left the school an hour later I felt much more at ease. The principal and teachers had convinced us that we had an ally in them in fighting against this disease, and though their word was all we had, sometimes you just can’t ask for any more than that. Only the day and the weeks and months that follow will truly tell.

To find more information on the JDRF School Advisory Toolkit, click here.


Liabetes

I think about this, about her, a great deal of the time, especially when she is not near me. I wonder what she thinks of it. What she fears. What she knows about her diabetes. She is brilliant and surprises me every day with just how much she’s listened and retained and what of this she is applying to her own life.

Some of what I hear is sad: I wish I didn’t have diabetes and could just eat what I want when I want.

Some spirited. To her sister, who early one evening jumped playfully onto the bed and landed partly on where she was laying: Ow, you hurt my pancreas.

But most of what I see and hear is Lia’s unshakable resilience. Before ever leaving the hospital she was pricking her finger and checking her own blood sugars. From day one at home she was doing the calculations to determine her insulin dose. Two weeks later she’s giving herself injections. I am astounded at the grit this challenge has given her, but only so much for she entered this world pretty much fully loaded with mettle.

It is a story she loves to tell herself. How eight years earlier on the Sunday of Labor Day Weekend, she burst onto the scene. A tiny, gray-skinned infant, kicking and screaming in the back of an ambulance in the parking lot of a Ruby Tuesday’s restaurant.

Thirty some-odd minutes earlier, her mother and I had been at our house, first patiently counting the minutes between contractions, then panicking as without warning they skipped from ten to three minutes apart. I called her doctor from the car. A few minutes later, 911. The operator who answered the call transferred me to a highway patrolman who forwarded me to a paramedic who, after hearing me tell our dilemma, asked what I wanted to do.

Do you know where the new Ruby Tuesday’s is? I asked him. He said that he did and I told him we’d meet him in the parking lot next door.

Then, in a scene like one only joked about: Franca, her knees bent and raised high in the air, supported from behind by one of the paramedics, who had positioned himself there, I can only assume, due to the space constraint, but mostly because he could not just sit by the side and not participate, while the second man sat at her ankles, wearing blue surgical gloves and waiting, waiting, with his hands open wide, like a catcher behind home plate.

It was a favor to all that he didn’t have to wait long. In roughly the time it takes to make a sandwich Lia Rosa spared any further delay and sprung forth.

She’s been in charge of the scene ever since (or so her big sister claims, but Mom and Dad know otherwise).

It would be a great leap for any parent to make to go from that first image of her laying on her mother’s warm chest in the back of that ambulance to eight years later us sitting in a mini van in the parking lot of a Wal Mart in between doctor’s visits and coaxing her to please, just please, try and give yourself the shot, because we know, her mother and I, that we can’t always be there and that now at this very moment the most important thing our daughter can do is learn to press that needle into her flesh and it just rips our hearts to pieces when despite her fears, despite the memorable sting of that needle that she has lived with for all of two weeks, and despite the organic simplicity of her age that has been forever shaken, that she takes up the pen needle and bravely does what we ask  because she trusts in us wholeheartedly and she sinks it into her stomach.

I sit there and watch at the dimple of skin in her tiny round belly where the needle is pressed and we count up to five with her. Her voice is low and steady. I draw strength from it like a pilgrim drawing his faith from bible passages. After she’s finished and withdrawn the needle she smiles at her accomplishment. I look at my wife and I see on her face the love and the sadness and also encouragement and I know then that it will be fine. We all will be just fine, but especially Lia. She had taken charge of her diabetes. She owned it, as much as anything in this world can be owned and no matter the cure that would one day be coming or the miracle that probably would not, for just that one brief instance I saw in my daughter something beyond her mettle and resolve. I saw her stoic will to endure. That’s Lia. That’s her.

Later that afternoon, we were sitting in the classroom listening to the nutritionist talk about portion sizes when Lia, who had brought along the white board we’d been using to do her humalog dose calculations on, flashed a big grin as she held up the board for everyone in the classroom to see. It read: Liabetes.

Endurance? Mettle? You betcha. My kid has loads of it.

Hope

I mentioned hope. In the days following Lia’s diagnosis, one of the first things we noticed in our efforts to understand diabetes was the plethora of information out there. Looking back through my internet search history for one day last week out of 289 different web pages I had visited for the day, eleven had nothing to do with diabetes. These were local or national news sites, social media or one of my kids surfing the web for a movie to watch. The other 278 were in some way connected to furthering my understanding of the ins and outs of this challenging disease.

Toward that goal, I’ve purchased or borrowed or checked out of my local library no less than a dozen books dealing with diabetes. I’ve watched web logs and spoken with family and friends of families and friends who’ve been touched by diabetes. Talked with nurses and doctors and pharmacists. Attended classes with educators. Read brochures and booklets and periodicals. Watched videos of children discussing their diabetes. And since bringing Lia home from the hospital, I’ve been part of an on the job training program like none other I’ve ever experienced.

Needless to say, I’ve learned a lot.

For instance, I learned that insulin must be stored in a refrigerator, not in the car in the hospital parking deck where it may sit for twenty-four hours. I’ve learned the importance of checking your pharmacy order for errors before you leave the store and not days later where you’re likely to discover they gave you the wrong test strip.

I’ve learned that if you make homemade pizza every Saturday night in order to enter figure the carb content of a typical serving, you need to know the weight of that pizza in ounces or 100 gram increments, not in terms of she eats two slices.

Also I’ve learned in relation to foods that vegetables and legumes are good for people with diabetes unless, of course, you’re talking about potatoes, corn or lime beans, which are technically fruits and have a high carbohydrate content.

I’ve learned that it matters where you inject and when you inject and whether you pinch the skin or not. That three a.m. blood sugar readings can keep you up the rest of the night no matter the number.

I’ve learned that Type 1 Diabetes makes up only about 10% of the seventeen million Americans diagnosed with the disease, the rest have Type 2, and that insurance does not consider either one life-threatening despite the fact that diabetes is the fifth leading killer of Americans and that a hundred years ago before the discovery of insulin, and thousands of years before that, the lifespan of a child post diagnosis of type 1 diabetes was measured in days, not years.

But I digress. I intended to speak about hope, not impediment. But the two as I’m learning are in fact intertwined. Obstacles spur hope, hope, in turn, illuminates the obstacles. To be sure they are what drive researchers all over the world in their focus on the prevention, cure and treatment of diabetes and its complications. Studies into self-regulating insulin, the artificial pancreas project, continuous glucose monitoring systems, which was cited in 2008 as one of the Top 10 medical breakthroughs by ABC News.

The list goes on: regeneration of insulin producing cells, cell replacement therapies, immune systems response studies, metabolic triggers, gastrin combination therapy, the growing global burden diabetes presents to the international community.

For someone so new to diabetes and still struggling with the sheer weight of the diagnosis, it is reassuring to learn there’s a wonderful community out there overcoming the obstacles one by one, learning in much the same way as we’re doing ourselves, through study and trials and errors, and an endless supply of hope.

Click here to learn more about the research being done for Type 1 Diabetes. To become a part of this community and donate toward finding a cure, please see here.

An Irregular Regular Routine

Here’s how it begins, our waking hours: Hugs, check blood sugar, plan meal, determine portions, count carbs, calculate insulin need, select site for injection, give shot, cry, comfort, then eat, fret, devour information on diabetes, fret more as we regurgitate the data we learned to one another, promise to focus on what we can do at the moment, and repeat.

Our life at every meal. In the mid-afternoon. At bedtime. In the middle of the night when everyone used to be sleeping. It is what we think about, what we talk about, what we worry ourselves sick over at all hours of the day or night, struggling with the fear that in any one of those critical steps we’ll make a mistake. On the dosage. On the carbs. On how we react to the intelligence we collected. And always, always, there is the one nagging question: how did this happen. How?

Hugs, check blood sugar, plan meal, determine portions, count carbs, calculate insulin need, select site for injection, give shot, cry, comfort, then eat, fret, devour information on diabetes, fret more as we regurgitate the data we learned to one another, promise to focus on what we can do at the moment, and repeat.

Somewhere in the midst of all that is hope, but for now our focus is much more immediate and we are working hard to handle that well, Lia especially. Remarkably well for someone so young, so innocent. True, there are moments of anxiety, frustration and pain, mostly around the shot, but sometimes with the regimented snack schedule too, but she owns this and she knows that she owns it and I honestly hate that for her. I hate it. We all do. If only there were some way to take her place. But the hard truth about diabetes is that it is not hers to give away and she knows this. It is something that she has accepted and so this is what we must do.

Hugs, check blood sugar, plan meal, determine portions, count carbs, calculate insulin need, select site for injection, give shot, cry, comfort, then eat, fret, devour information on diabetes, fret more as we regurgitate the data we learned to one another, promise to focus on what we can do at the moment, and repeat.

To read more about the care of Type 1 Diabetes, please follow the link Type 1 Diabetes Control and Management.