Honest Open Arms

It was Richard Bach, author of Jonathan Livingston Seagull, one of my favorite books growing up, who once said: “Rarely do members of the same family grow up under the same roof.” I am thoughtful of that today as we start a new chapter in our home and also in our hearts by welcoming someone new into our family.

The opportunity came to us a few months ago: A 16 year old exchange student living in Germany was searching for a host family in America. The girl—we’ll call her Z—has type 1 diabetes and, according to the area coordinator, was diagnosed around the same time as Lia in 2008. Franca and I talked about it and thought Z perfect for us, and thought us perfect for her, too. We could only imagine the great opportunity her coming here presented, but also the obvious conflict of a teen with diabetes leaving home for a year. With Z’s courage and our experience, it seemed a perfect match.

So the waiting is over and as I write this she sits in a plane somewhere high over the Atlantic, as nervous, excited and hopeful, I assume, as we are after all these many weeks of waiting, exchanging emails, chatting through Skype and Facebook. Today, we finally meet.

There will be a lot to learn for her and for us to learn about her, and while certainly diabetes will be a part of that—just her coming here serves as inspiration and reminder that there is nothing in life save our own fear and self-doubt capable of holding us back—there is so much more to share. About our language and where we live. About family and trust and goodwill. Already the girls and Franca and I have spent time talking about who we are as a family and what values we find important. About sharing our selves with someone else. For days now, we have been ready.

I have always used this blog as a way of culling through the little and big things life throws at us, beginning and mostly surrounding Lia’s diagnosis, using words and my writing to search for some understanding, some clarity, and maybe, perhaps, some direction. It has helped me discover things about myself I didn’t know and on other occasions it taught me nothing at all, just offered a glimpse into the peaceful, happy life we know and strive for, which on second thought, now that I think about it, standing here on the day we open our arms and our hearts and our home to another says a great deal after all.

 

Just Around the Next Bend

As Steve mentioned a few weeks ago, we packed up the gear and the kids and headed off to the mountains of Southwest Virginia for some much needed back-to-nature time. No cell phones, no computers, no television or Red Box. A chance to detox from the connections that keep us firmly rooted in our busy lives. And also the opportunity to remember that there is a great, big, beautiful world out there and the best entertainment is often the sharing of stories with those with whom we share it.

This was our second foray into the wild with diabetes and to be honest we felt like pros. Meals were planned to the nth detail, the food pre-measured, pre-packaged and pre-labeled, and in some cases even pre-cooked. The load divvied up amongst us. Supplies checked and re-checked. Our plan for managing all things diabetes researched, discussed and settled. All that was left was the leaving.

In terms of blood sugar control, we opted to try something new: dose 100% for the food Lia ate, and use negative temp basals to reflect the increase in activity. This turned out to be a better plan than last year’s and easier to manage. The first half-day, we only put the temp on for four hours and then forgot to renew it, so she battled some lows later in the day. For the rest of our trip, we put on temps for twelve hours before we left for the day and this worked out perfectly for the most part:

By the Numbers (Data from Diasend)

Average Blood Sugars While on Trail: 153
BGs within range: 67%
BGs above range: 16%
BGs below range: 5%
Average daily basal insulin: 8.2 U (a full 2.3 units less than at home)
Average daily bolus insulin: 11.5 U
Average BG correction: 8%

The Hike

We hiked a total of 22 miles: 8 miles the first day to the top of Mount Rogers; 8 miles the second day to the Scales; and 7 miles the third day back to our car (two miles on VA 603).  Both girls did a great job keeping up and staying in high spirits, even when feet and backs hurt from the rocky terrain and from the climbs and descents.

On the first day, Lia hiked all day with her pants on backwards and didn’t even notice until lunch. She also fell over once when having to get over a fallen tree and needed help getting up from her overturned turtle position. Our hike was mostly uphill, and rocky only in places. The night was cold but not unbearable and it took us longer to get up and going on the second day than on the first. We lost time and had to adjust our route by cutting across the park on a horse trail, which in hindsight was a bad idea.

Horse trails, designed for horses, are filled with large loose rocks that are difficult to walk on. The horse trail was four miles long and muddy. At one point, Steve was out front and saw a copperhead snake. He turned around just in time to see Lia nearly step on it! Their quick reaction saved her from a snakebite and a disastrous end to our trip

(and possibly an upcoming plot line for a novel). We were all shaken so much after this that we just wanted to get to our destination and take a load off. The four miles felt like eight and Steve’s near-constant assurances that Scales was “just around the bend,” made Krista and I want to scream.

Change in Plans

We love Southwest Virginia. The beautiful vistas we saw during our three days were some of the most breathtaking views we’ve seen as a family. We saw our favorite friends, the feral ponies of the park. At Scales we encountered 50-60 heads of long-horned cattle, and continued to hear their lowing long into the night when a mama and her young were separated at dusk. Unfortunately, on the second day, our memory card malfunctioned and all the pictures from the first two days were mistakenly erased! We did manage to take a few on the last day.

On our last morning, we awoke to frost and a temperature of 25 degrees! Before the girls woke, Steve and I decided not to spend our final night at the campground as originally planned, but to head to West Jefferson, NC for a night at a hotel.  We ate breakfast and everyone was ready in record time. On our way down the mountain, we encountered a young man who was through-hiking the Appalachian Trail with his beautiful black German shepherd, as well as several other

campers who were short-term hikers like us. The last two miles on the road were brutal. We were once again subject to Steve’s continued assurances that the end was “just around the bend.” We were happy to finally see a sign designating the Grindstone Campground.

For all the preparation and work that we put into going on our trip, nothing compares to going to the great outdoors. It sounds like a cliché, but the clean air of the countryside, the reduction of noise and light pollution, allowed us to see things we would ordinarily miss. We noticed each other, our idiosyncrasies and habits, manner of speaking, and things we say. We listen.

And yes, diabetes, our unwanted companion, is always along for the ride. But the planning, preparation and organizing we do in advance allow us to put diabetes second, and Lia and Krista time first.

To say that we enjoyed our trip is an understatement. For three days the girls didn’t bicker, they rarely complained, and we, the parents, did not need to scold. We were surely tired when it was over, but this is the one time a year that we truly reconnect, without electronic intrusions of any kind. We are connected through our disconnectedness. We live simply and purely for these days, and we are better for it. We feel confident that we can plan for even longer trips, even if diabetes has to come along for the ride. It is Lia’s favorite activity that we do as a family and this year it has made me think of the old Steve Winwood song. It is true that life goes on too fast with these trips we hope to slow it down.

“We’ll be back in the high life again
All the doors I closed one time will open up again
We’ll be back in the high life again
All the eyes that watched us once will smile and take us in
And we’ll drink and dance with one hand free
And have the world so easily
And oh we’ll be a sight to see
Back in the high life again”

Metaphorically, that is.

 

For those interested in our supply lists and menus, here they are:

Supplies

  • Glucose meter w/ test strips, lancet device, extra lancets
  • 2 spare infusion sets 2 syringes
  • 2 vials of 50ct test strips 1 vial of insulin
  • spare meter extra batteries for meter and pump
  • glucagon kit spare battery cap, spare cartridge cap
  • Emergency info, copy health insurance card, and prescriptions
  • glucose tabs

The Menu

  • Dinner on Friday:  Fried chicken, potato chips
  • Saturday
  • Breakfast: Whole Wheat Bagels with cream cheese (with chives, bacon, and sundried tomatoes)
  • Lunch: Veggie Burgers, dried apples
  • Dinner: Gnocchi with sage butter, bacon, and sundried tomatoes
  • Sunday
  • Breakfast: Apple Almond Couscous
  • Lunch: Ollalie Wrap (spinach and whole-wheat tortillas, cream cheese, roasted pepper pesto, and Israeli couscous, with bacon)
  • Dinner:  Manly Man Orzo
  • Monday
  • Breakfast: Strawberry Almond Couscous
  • Lunch: Esmeralda wrap (spinach and whole wheat tortillas with cream cheese, avocado, sundried tomatoes and bacon)

Snacks

The Kitchen

  • 2 stoves
  • 2 pots with lids (1 small, 1 large)
  • 1 serving/stirring spoon
  • 4 sporks
  • 4 bowls
  • 4 cups
  • 1 cutting board
  • ½ sponge
  • camp dish soap
  • 4 small cloth placemats
  • 1 wiping cloth (for drying dishes)

 

Delightful Survivors

The rigid person is a disciple of death;
The soft, supple and delicate are lovers of life.
                                –Tao Te Ching

 

For Diabetes D-Blog Week Day 2 the topic is to tell about one diabetes thing that we do especially well. So rather than go this one alone, I enlisted some help over dinner last night and what we came up with were a number of things we felt pretty safe bragging about—making good food choices, checking blood sugars regularly, working to understand her diabetes better—but all of us agreed at the tip-pity top of the totem pole is Lia’s own self control.

She has her mother to thank for that. I am much better at keeping my cool in a dire emergency, but Franca—and by pedigree, Lia—have true survivor mentalities. They are humble, gracious and love to laugh. They believe in themselves and live in the present. The decisions they make are simultaneously bold and cautious.

Diabetes is hard on a little kid. No, that’s not quite right. Hard is something you do, like sprinting or moving a piano. Putting up tobacco, now that’s hard. Living with diabetes is galaxies beyond hard. The word hasn’t been invented yet to describe this disease for a little person. Arduous. Demanding. Complicated. These simply don’t stand up to the job.

In fact, hard is the word I’d use to describe Lia, not diabetes. Hard as in: firm in her convictions, whose spirit is not easily broken. Someone who meets each day head on with humor, diligence and earnest. That’s Lia. The one who is able to come home from school not in tears, but smiling incredulously with a story to tell of her teacher who in passing out bars of chocolate to the students came to her and said, “I know you can’t have this, but maybe your sister can enjoy it.” Or who during a critical moment of a pump site change on her derriere says to her mom, who is kneeled down behind her about to release the needle, “Wait, can you move your face away a minute” because she has to fart.

Managing diabetes is an enormous, endless task, like cutting tobacco every day of your life, but it is really no match for a will and personality that are as strong and delightful as that of my lovely daughter and her stoic mother.

Come What Come May

Any parent of a child with type 1 diabetes knows the importance of living in the present. To live any other way is to focus too much on those things that lie beyond our control. Better treatments. Soaring costs. A cure. But what about that other member of the family, the sibling?

For Krista, who’s smack dab in the midst of her teen years, awareness of Lia’s diabetes isn’t enough to keep her up nights with worry, or preoccupied with how to pay for health care, or the whereabouts and funding of research. What she observes and retains is much more immediate: frequent finger pricks, food scales and carb counting, painful repetitive procedures that appear, rightly so, to get in the way of the normal, untroubled life every teenager (and everyone else for that matter) most yearn.

So what happens when Krista gets sick, or more precisely when the symptoms of her illness mock those of what Lia experienced just before her diagnosis?

Worry, that’s what.

Worry about what might be, not what is.

“Come what come may,” said Macbeth to himself after meeting the witches, those secretariats of blind ambition, oracles foretelling the future. “Time and the hour runs through the roughest day.”

I thought of this simple yet legendary line recently when Krista experienced one such medical crisis. She’d been complaining of dehydration and of frequent trips to the bathroom and fearing an infection, or worse, had been taken to see the doctor. They tested her urine for a disorder and found nothing unusual, but a trace amount of ketones. She was sent home and we were told to monitor the situation. Nothing was said about diabetes, her blood glucose level was not checked, there was no hasty rush to the ER. But that didn’t matter. Much like the throne to Macbeth by those witches, the idea had been sufficiently sown: What if?

Later that day we did check her blood and when she wasn’t feeling better the day after that we checked it again. Both times we found it normal. So it was not—or is not yet—diabetes, but the whole thing raised the question: yes, precisely, what if?

What if diabetes struck again?

There are two answers of course to that question. There is the parental answer: We know what diabetes is and we know how to treat it. We’ll deal with it. If ever there was a motto for the parent of a child with type 1 it is “Come what come may.” If it happens, it happens. We’ll manage.

Then there is the child’s answer, which is not an answer at all but more questions: How? Why? What now?

To be sure there are answers to these, just as there were answers when we learned of Lia’s diabetes two years ago. But answers take time to arrive and telling a young person the secret to a happy life is learning to endure is like telling an ambitious but dithering brave warrior of a prophecy he would be king. The reality takes some getting used to. But as Shakespeare understood, even the worst of days come to an end.

Unless, of course, you’re Macbeth.

 

 * * * * * *

A Special Announcement

In honor of my wife and daughters and the pursuit of a healthy lifestyle by women everywhere, we are pleased to announce that beginning this week, some excerpts of the best and more memorable posts from our family’s journey of living with diabetes will appear on Lifescript.com, one of the most dedicated and respected women’s health portals on the internet.

Franca and I are honored to have this opportunity to spread awareness of Type 1 Diabetes and share with others the challenges, the small and large victories that parents, caregivers and people with diabetes demonstrate everyday to live life to fullest.

Click here to check out WOE at Lifescript


The Story That Keeps On Giving

It has been a busy past couple of months for us with teaching, writing and a little travel to New England for the Thanksgiving holiday. But I took some time over the summer to recap for a local magazine just what our first year with diabetes was like and I’d like to share it with you here. For many of you, this will be nothing new, both in terms of what you read as well as what you and your special little loved ones have endured. To be certain, it’s a story I love to share and with nearly another year having passed since Lia was diagnosed, the fear, the hope, and the love with which we greet every day has not changed. We’re still learning to live without envy.

Into D-Wild

Steve and I love the outdoors. As parents, we try very hard to instill that love in our children.  When not on a His-and-Her-only retreat (for you other outdoor enthusiasts check out Mount Le Conte, a “primitive” lodge in the Smokies reachable only by hiking. You will not regret it!), we’ve had the kids join us for a wide variety of outdoor recreation in the hopes that our love and respect for nature will rub off on them: camping in the Appalachian mountains; a four-day canoe trip down the Buffalo River in Arkansas; and once to the beach (heat + sand + tent = Sad Franca, so we didn’t do that again).

Three summers ago, just months before Lia’s diagnosis, Steve and I took three days to hike 42 miles of the Appalachian Trail. It was an awesome time together and afterwards we talked of bringing the girls with us on the next one. Diabetes derailed those plans and other than visiting a couple of park-managed campgrounds, it kept us from venturing too deeply into the wild. But only for a while.

This year, we decided we would give it a try with diabetes as our fifth traveling companion. After careful planning–thanks to Mike at Rainforest Treks, a website about hiking with Type 1, as well as Melissa at meewah*betic, for all of their hints about food, insulin, and what to bring; and also to OnePanWonders’ “Dicentra,” for what to cook–we settled on a 12 mile section of trails winding through the beautiful Mount Rogers National Recreation Area of southwest Virginia.

 The Pack List

Our pack list consisted of the usual backpacking fare: tent (a four-person four-pounder, thank you very much Tarptent), sleeping bags, extra clothes and kitchen gear, but also had to include whatever diabetes supply needs and emergencies we might encounter in the woods for the two full days we expected to be “away from civilization”. Steve whittled the list down–with help from those mentioned above–to the following:

  •  Glucose meter kit w/ test strips, lancet device, extra lancets
  • 2 spare infusion sets, plus tubing
  • 2 spare cartridges
  • 2 syringes
  • 2 vials of 50ct test strips
  • 1 vial of insulin
  • spare meter
  • extra batteries for meter and pump
  • spare battery cap, spare cartridge cap (really channeling Murphy’s Law here, thank goodness these things are light)
  • 2 individually wrapped ketone strips with color chart (again, Murphy’s Law)
  • glucagon kit (Murphy again, damn you!)
  • Emergency contact info, health insurance card (we didn’t take along prescriptions, but next time we might. With Walgreens on every town block, who knows)

The Food

As you know, I love cooking and food. Being outdoors is no excuse to leave this passion at home, otherwise it’s just a walk in the woods, not a journey toward some fabulous dish prepared in a single pot on a little camp stove we toted for miles on our back. Things have come along way since the days of some fat man named Cookie serving cowboys beans around a wagon. Still wanting to keep things simple though, I had only three requirements: It had to taste good, it had to be light enough to carry, and it had to help in the control of Lia’s blood sugars. I settled on the following:

  •  Lunch at the Trailhead:  Ham and Cheese, or PB&J Sandwiches
  • Day #1 Dinner:  Gnocchi with saged butter and parmesan cheese
  • Day #2 Breakfast:  Crepes with Nutella, Peanut Butter
  • Day #2 Lunch: Modified Esmeralda wrap (whole wheat burritos with crème cheese, black beans, avocado, and bacon)
  • Day #2 Dinner:  Manly Man Orzo
  • Day #3 Breakfast: Oatmeal with dried fruit, hard boiled eggs, bacon (pre-cooked at home)
  • Day #3 Lunch: Dilly Tuna Salad Wrap

For on the go snacking, each of us carried some variety of homemade granola or trail mix, crackers with Justin’s Nut Butter, and beef jerky. For the likelihood that Lia might suffer a low, she carried glucose tabs, a bottle of juice, and sucked on Werther’s Original Hard Candies whenever she felt the need.

To get all this food where it was needed, our camp, the girls divvied it up by meal, so in addition to each of them carrying her own pack things, they carried a breakfast, lunch or dinner. Steve carried the stove and cook stuff.

 Blood Sugars

For the two days we were hiking, Lia’s BGs averaged 161 and 135, respectfully. She suffered no lows and the highest it climbed was the middle of the first night at 263 (ah, gnocchi…. and here we were worried about carry-over from all that outdoor exertion!). Helping these numbers was a +30% temp basal set for the four hour car ride, a 50% reduction during the hike, and a return to normal once we set up camp (These worked for Lia, please don’t assume they will work for you).

In fact, we noticed that as long as we kept her well-fed with proteins and whole grains, her BG was cooperating just fine. She snacked on the granola, dried fruit and nuts, and relied on the  Werther’s when needed along the trail. The Friday morning breakfast of crepes with Nutella was probably not a good choice. She was headed for a low by lunch–which we successfully avoided–a situation not helped by the empty calories of Nutella (even though it is just so yummy).

We took breaks often. Each time we stopped, we checked BGs and had a snack. We had comic relief when the girls and I put our packs back on:  it was not an easy feat and it sometimes required assistance. Lia ended up in the upside down turtle position many times and Krista took a most unflattering picture of me that I won’t share with you. We all had a hiking stick to help us get up (and down) those sometimes very steep and rocky hills.

 The Hike

When we arrived at the trailhead parking lot at Grayson Highlands State Park around noon, it was a chilly 54 degrees. The foliage in Southwest VA at that elevation is nearing its peak: bright reds, yellows, and oranges already carpets the entire landscape.

What I love most about hiking is the quiet and noticing the details of the forest floor. No one I know cares very much about moss (except my friend, Jenny), but I just love to see all the different and beautiful varieties of moss. During one of our breaks, I asked Steve if he was pointing out the flora we saw along the way. He told me that no, in fact, he was not because Lia was talking about scat and boogers. In terms of quiet well, Lia wanted to tell us all that she knew, and with Lia, a story often takes twice as long to tell.

When we arrived at our campsite on Friday night, we couldn’t believe our luck. The Scales, as they call it, is an old corral where they used to weigh livestock back in the old days, but now, it is an open field surrounded by a wooden fence, a nice, mostly-clean privy, and even tapped spring water. After a long climb to end the day, we felt like we’d won the lottery! It was getting very cold and windy so we set up the tent and the girls began arranging our beds, Steve worked building a fire, and I started on dinner. After the gnocchi, which was hot and delicious, we stood around the fire a little while and gazed at the billions of stars that aren’t normally visible from our “city” street at home. This, I feel safe in saying, was everyone’s favorite and most memorable moment, gazing up at all that dark sky.

That night, the wind howled. The sleeping quarters were cramped, what with the four of us and a big dog to occupy that four pound tent, but we managed. The next morning, we had breakfast, broke camp and set out. It wasn’t long until we ran into a few of the feral ponies that live in the park, one of which allowed the girls to get close enough to pet. The area also sports a vast horse trail network and we encountered a number of people on horseback, one man and his granddaughter stopped and spoke with us for a while at our lunch spot and even gave Lia her first riding lesson! Not long after, we had a big laugh at Krista’s expense right when her retainers (which we told her to put away in the carrying case) were blown off the rock we were sitting on and fell onto a big cow paddy. She won’t allow that to happen again! In the end, it turned out that we out-hiked ourselves and were done with the 12 miles about a half day ahead of schedule.

Our trip was a total success. We had a great time, laughed a lot and spent time together in the great outdoors. We know the girls are willing to go out into the wilderness again to do longer hikes. Lia has an appetite for roughing it. Krista likes it, too, as long as she can be fashionable.  We’d like to take them to LeConte someday soon. We feel confident enough with this experience under our belts to take on something a little more challenging.

 Steve and I would love to venture out again as a couple, too. But that will be more difficult. It’s not Lia being outdoors that worries us; it is us not being there with her. We don’t want to be out there, where we can’t be reached—just in case. Our level of comfort for that isn’t there yet, but it will be one day, we’re confident, when she is older. For now, we take comfort in the fact that she loves being outside and enjoys the small wonders of nature that surround us every day.

Born in an Ambulance

“Don’t worry,” she said, “I’ve done this before.”

I looked skeptically at her–this superhero, who had in her life done many brave things–where she stood very pregnant near the bottom of the stairs of our house, the keys and the phone in my hand, ready as the faithful sidekick.

“Really,” she went on, one arm cupping her rotund belly, “they just started.”

I followed her into the kitchen, where she poured herself a glass of water. “How long then?”

“A couple of hours at least.” Her answer did little to relax me, deep down or on the surface. “Listen,” she went on, “if it’ll make you happy, I’ll call my sister and let her know what’s happening so she can be prepared to come get Krista. Later, we’ll call the doctor.”

I nodded okay, after all she had done this before.

And honestly, I had too. But Krista’s birth was different. For starters, she had come in the middle of the night, where middle of the night was for sleeping, which meant driving to the hospital then, but especially all these years later in my memory, was like being in a dream. Ethereal. Illusive. Following that, the labor had lasted only four hours, which meant if my math was correct now, we were wasting precious time.

So we waited.

An hour later, Franca came outside where Krista and I were playing and sat down on the steps of the porch. I came over. “Everything okay?”

She looked at me. “I think we need to go.”

“But you said we had hours.”

She flashed a look at me: Don’t.

“All right,” I said. I nodded up the drive where Krista was merrily pedaling her tricycle around. “What about her?”

Franca groaned.

“How far apart are they?”

“Three minutes.”

“What happened to four through nine? Never mind. How long before your brother-in-law gets here?”

“I don’t know.”

I looked up the drive. It was Sunday and a pretty Labor Day weekend. “Should we just take her with us?” With a comment reminiscent of her earlier false assurance, Franca said to give him a few more minutes.

The few minutes passed with no sign of Krista’s caretaker for the next several hours so I helped Franca to her feet and got her to the van and was on my way to reign the little one in when my brother-in-law showed up. I handed him Krista before he’d fully stepped out of the car. “We’ll call.“

We left the house and I called the doctor. “I’m not sure we’re going to make it,” I said. The hospital was across the county, a thirty minute drive in good traffic. On a Sunday afternoon in which every mall between here and there was hosting A Sale to End All Sales, it could take twice that long (naive me was still trying to do historical math). The doctor was very calm and nonchalant, like we were just friends lost on the way to their house for the holiday bar-b-que. “Just buzz me if you stop at one of the other hospitals and let me know which one.”

In the passenger seat, Franca was groaning, saying Oh, Oh, over and over again. I kept my eyes on the road. A minute later, hardly two miles from the house, I dialed 911. The 911 operator patched me through to a State Trooper. “Where are you now?” he asked after I explained the situation.

I told him.

“Which hospital?”I gave him the name and he said to me: “Well, sir, I don’t know what to tell you. I can’t give you permission to speed.”

I glanced at the speedometer. It read somewhere between 90 and a gazillion. “Listen,” I said as I pulled up to an intersection and using the turning lane inched up to the red light far enough to see in both directions, then pulled on through, “unless you know something about delivering a baby, I need somebody who does.”

The Trooper replied, “Hold on.”

The next voice I heard identified himself only by name, which I found out is not very reassuring in the midst of a looming crisis. “Is this a paramedic?”

“You’ve reached the rescue squad.”

“Where, which one?”

He gave me the location. Only another five or six miles further down the highway. “What do you want to do?” he asked. “Pullover on the side of the road?”

“No, I’ll meet you.” I thought about where. I wanted to get as close to them as possible without having to deliver the baby myself, or worse, Franca delivering while I was navigating holiday traffic in a miserable old mini-van traveling a hundred miles an hour. “Do you know the new Ruby Tuesdays?” I asked.

“The one just up the road?”

“I’ll meet you in the parking lot.” I hung up the phone and looked over at Franca. All the while I’d been keeping my eyes off her, afraid of what I might see. “Just a bit further,” I said.

A mile from the restaurant her water broke. I didn’t know what to say. What could I say? Hold on. Lay back. Be steady. All of these things sounded appropriate for a normal delivery, but for this, I don’t know. They sounded just beyond that. So I said what I learned in Lamaze class when she was carrying Krista. “Breathe. Okay. Breathe.”

We pulled into the Ruby Tuesdays and parked in an empty lot beneath a tree along the adjacent strip mall. I got out of the van. There was no ambulance in sight. I came around and opened Franca’s door. She looked at me and I looked at her.

It is moments like these, just two people struggling against odds they can’t even begin to imagine that make life so interesting.

“I think I should take off my shorts,” Franca said.

I looked down at the only thing of any substance between that baby and the rest of the world. “Do you think that’s a good idea?”

“It’s the only idea.”

I looked across the lot and down the road for the ambulance. Still nothing. I opened the sliding door, wondering even as I did how I’d move her from the front seat to the back without introducing gravity to the situation. Then I heard the siren. Franca had heard it too and fallen quiet either from relief that help was arriving or her acceptance of the fact that she was about to deliver a child right there, in the next few minutes, in a parking lot.

The ambulance pulled up and two men stepped out. One of them checked her out. “Okay,” he said. “We better hurry.” The other brought over a gurney and they lifted her out of the van and rolled her into the back of the ambulance. She looked up as they shut the door. Neither of us spoke.

Inside the ambulance was a scene like you hear others only joke about. For everyone’s sake I’ll spare the details but to say: when it was over, and it was over very quickly, I got to cut the umbilical cord. And afterwards there was Franca, fully reclined in the back of the ambulance, clutching our daughter to her chest, looking exhausted but at the same time calm and composed, like any veteran superhero.

Happy Birthday, Lia Rosa!

9.2.01, 6:51 pm, in the back of an ambulance

Dog Days of Summer

A few years ago I wrote a story about a dog we owned named, Digger. The piece was for a local publication which every August ran a special “Dog Days of Summer” edition printing favorite pet stories submitted by their readers (you can read it here, if you’re interested). The story was, originally-enough, titled “Digger”, and centered around an account of a transatlantic flight the two of us took to Italy. But the story wasn’t about him. It was about me.

At the time, long ago, when it took place, I was twenty-nine years old, a jobless, war veteran and recently divorced, and the only thing certain of my immediate future was the fact that I was in store for a much needed change, starting with my address. As with any such endeavor there were challenges — as you can see if you followed the link — from the very moment the plane touched down, and what I learned about life in the months and years that followed this particular decision was that, unlike the reunion that takes place at the end of the “Digger” story, things never do quite go back to the way they were. There are histories to contend with, attitudes, beliefs, memories. Even were we able to successfully contend with those, also mudding the progress — or regress, as it were — is the fresh, undeniable reality of today, right now, this one very moment.

This summer brought a reminder of this, in many differing ways.

To begin, there was Diabetes Camp, a first for our family. The weeklong, must-do-ritual was for us all terrifying, exhilarating, liberating, nerve-wracking and totally life-changing. In a moment, I will tell you what it meant to Franca and me, but putting it into words for Lia is not only difficult but likely impossible for me, so I’ll just have to rely on a photo.

 

With Krista (and the dog, too!) visiting her grandmother that same week, the time Franca and I spent to ourselves was not only all of those things I mentioned above, but it was rejuvenating, too, to be alone, just the two of us, without kids, without errands, without TV and toys, without arranging play dates, sleepovers and otherwise attending to the rewarding, endless chores of parenting. And, yes, it was, for us at least, a break from diabetes.

I feel okay in saying that … taking a break from diabetes, though I know that Lia did not and will not ever, without a cure, enjoy the same freedom. I think were she to hear me say that, she might misconstrue my comment as, thankful for the break from her. But I trust when she is older, she will understand. Raising a child is demanding. Nothing in nature can duplicate the absolute pleasure or worry that being a parent employs. It is often what comes to define us, day in and day out, which is why our time alone together was so special to Franca and me. It helped us remember and relive who it was we both were before, before kids and before diabetes.

The week ended and we all came back together and picked up where we’d left off. Only we didn’t. Something had changed. Not everything, but some things. Lia, of course, was more independent, reaching new, unthinkable depths in terms of strength and confidence from living and breathing the camp battle cry, Positive Mental Attitude, with so many others just like her. Her spirit and courage are truly inspiring. Krista, too, had returned from grandma’s showing an air of young adulthood that wasn’t so much surprising as it was just delightful to see. With freshman year upon her, she is, I believe, exactly the person her mother and I always raised her to be. Happy. Smart. Trustworthy.

I, too, had changed, in a way I could not have predicted. For eighteen months, I had worked, wrote and read to learn all I could about diabetes and how best to take care of our daughter. With her gone to camp and the daily necessity temporarily lifted, I — and Franca, too — reveled in the way things used to be. So much so that when the vacation ended, I was left for a moment with a wishful longing that was both pointless and questionable.

How much had I let diabetes consume my time? Was I practicing what I was preaching: life without envy despite diabetes? Had I become a victim caretaker to this disease? After all, I had read about it, blogged about it, started a memoir about our first year living with it. I had researched the origins, the treatment, the science in search of a cure; constructed elaborate spreadsheets to help track Lia’s blood sugars; grown meticulous, alongside my wife, in keeping a log. We had volunteered our time, given money, advocated to Congress for change.

In doing all of this had I so fallen out of touch with who I was that five days alone with my wife felt like a once-in-a-lifetime, dream come true?

And what of my own writing, of the novels I had envisioned having published by now? And just as important, what message was my putting that promise on hold sending Lia and Krista? That pursuit of your passion is good until some reason to not comes along?

It shouldn’t be that way, but unfortunately that is, many would agree, the challenge to parenting, holding on to our individuality. It is harder still when the reality is that as parents of children with diabetes we are in a place we never for a moment imagined we’d be. Regardless the age of our children when  diagnosed, we do remember what life was like before diabetes. That is in all honesty a difficult thing to forget. But just as true is the fact that it’s here and setting one’s heart otherwise is a fool’s whimsical errand.

I don’t know what the right mix is, but it can’t be all or nothing. There is out there some happy middle ground, and it’s important to me that I find it. Maybe the key, now that I think about it, is what Digger so innocently demonstrated: There are some things we can control in this world and there are some things we can’t. In the end it’s not the who, what, where or why that defines us, but our actions and the love we have for one another, no matter the situation. Those are the same, or they should be. Perhaps it is our human nature to forget that. Thankfully, there are dogs, who remind us sometimes that all it takes is shrugging it off and climbing into a kind lap.

There is more I could say about our summer… the collapse of the garden and other pursuits of simple living, our consideration for finding a new endocrinologist, but I will save those for another day as I look to broaden the scope of discovering what exactly Life Without Envy means to me. For sure, it will be an interesting story.

Worth a Thousand Words

I love the idea of documenting our d-journey through pictures and while it’s true we have captured a few memorable events on film (or in pixels, rather), unfortunately, there’s just not that much more that’s worth posting beyond what I’ve already shared. So, instead of inundating you with pictures of say, the combined quarter-century worth of kid’s birthday parties, I thought I’d offer those photos that best sum up what I personally find most endearing and important about our journey.

Each, I think, carries nicely a personal sentiment of how it sometimes feels to live life with diabetes. It’s fitting, I think, that only with Lia did I need more than one.

 

Leap of faith

 

Letter To My Children

 

Dear Kids:

As I write this letter I imagine it as a pin hidden in a haystack, buried beneath dawdling levels of virtual white pages, layers upon layers of words and wordsmithed images and deliberation. How many, heaven only knows. Plenty, I hope as that means I have plenty of time to write them. I picture one of you, Lia most likely coming across it, years from now, perhaps as an adult who upon finding herself on a rainy day lamenting her lost childhood, taps on the computer and logging online enters the words, Without Envy.

And you read. And you read and you read and at some point you come to this letter where by then, if you don’t know already it, you will have some sense of just how much your mother and I love you, and how much we love your brother and sister, and especially how hard we’ve worked for and wished for you all beautiful, long, happy lives. Little of what you have read, it’s my hope, will surprise any of you. I try to wear my beliefs on my sleeve, that is, for all the world to see, by not saying one thing and doing another. If your mother and I have done our jobs well, you will all know that the fruits of hypocrisy are smells not so easily removed with the laundry.

I’ve tried also to be honest with what I’ve written and how I felt about diabetes, about each of you,  your mother and our family in whole, and I’ve especially wanted to be honest about life and growing older. Nothing in life is guaranteed, regardless how hard you may want to believe it. There are some things you just can’t control. That is a lesson as painful as any you will ever learn. Focus on the things you can change and live satisfied with the fact that your efforts were not wasted on that which you cannot. Your courage, confidence and ability to adapt will not ever let you down. Trust yourself.

Here, too, are some things of our lives you will read about that you will have likely forgotten. Maybe you will have forgotten all of it. Some might say that’s for the better. I don’t know if that’s true, but I’d like to think that it’s not. I’d like to believe that there is always something to be gained, not lost, from knowing a thing. Undoubtedly, some of what I’ve written will make you feel sad and unhappy and I hope you will forgive me, but one day you will understand my reason for wanting to write about those things. I wish with all my heart that none of you will ever have to feel that way about anything but chances are that you will and it’s important for you to know that writing can help you overcome it, or at least come somewhat to agreeable terms with it.

In fact, as you read this it might seem as if our entire world revolved around diabetes and moments of grief, worry and hardship, of which I’ll admit there have been plenty. But I know you all and I know that each of you knows better. There simply aren’t enough words, images or seconds in the day to share with you all the joy, happiness and love that our children have brought us. You have all made us better, healthier, happier people and for that your mother and I are grateful.

For John, the oldest, but uniquely the newest member of our family, the quiet performer of the bunch, whose own story is worth writing down in a novel.

For Krista, the one always stuck in middle. You understand much more than you sometimes let on or that we give credit for. You are as much a survivor and hero as any one will ever meet.

And for Lia…. Well, way back when I started this blog and was coming up with a title, I wanted to find something that represented not only how I felt about you and diabetes, but how I felt about life on the whole. Diabetes had become a part of us, but it would not become the whole of us and in searching for a way to represent the fine balance between the life we start out wanting for ourselves versus the life we are handed, I thought of the day you were born, two weeks early in the back of an ambulance, far from design and the doctors and modern conveniences of childbirth. To be sure, it wasn’t part of our plan, but I understood then with humility that sometimes the road less envied produces the more spectacular journey.

This is the reality, children. The path you must carve through the universe is yours to decide. Choose your dreams wisely. There’ll be struggles along the way, for you as there is for everyone, but if you trust in your heart and lead with an open mind there is nothing out here that can stop you.

I love you all equally, with all of my spirit.

Yours forever truly,

Dad