What I Didn’t Say

Ever wish you’d stood up and said something at a funeral?

I’m Tara. I’m the first grandchild. Beryl June Freeman Keene was my “Nana.” Nana was 41 when I was born, just one year older than I am today. From the time I was born until my college years, I spent nearly every Sunday with Nana at the Keene family house – where my dad, 2 uncles, aunts and young cousins gathered to watch football, play pool and enjoy a family dinner. My warmest and strongest childhood memories revolve around that house… and the woman who was the next closest person to me besides my mother (and dad, of course).

We shared Thanksgiving and Christmas dinners there every year – our large family gathered around the big kitchen table – my uncles “hiking” dinner rolls across the table after someone said Grace, my aunt unbuttoning her pants halfway through the meal, the year Nana dropped the turkey and it skidded across the linoleum floor. Where we’d retire downstairs to watch the Wizard of Oz and the grownups would enjoy a drink at Lady Windsor’s bar.

Certain traditions Nana had became events in her house: chicken pot pie dinners began with her homemade noodles, rolled out and cut and spread out on her counters to dry… apple dumplings fresh from the oven with milk and sugar… and my favorite – Christmas cookies. Nana made everything from peanutbutter to chocolate chip to cut-out cookies, the latter spread out on half a dozen baking sheets set on the table where we’d gather to decorate stars and bells and Santas and angels (some a little more than anatomically correct.) The cookie tradition I planned to carry on with my children and, sadly, only this year begun because of the diabetes and figuring carbs on butter cookies coated in sugar and sprinkles.

One of the last memories I have of that house was the night of Candy’s wedding, when so many of us gathered back in the rec room downstairs, watching the first footage on tv and giving drunken commentary on the whole affair. It may not have been a Hallmark moment, but that night was just another reflection of the warmth and love and joy our family shared – the home and family created by Nana.

She was so gentle and kind – she had a beautiful, ready smile and a sunny disposition – never one to complain, if her greatest flaws were worry and a don’t-rock-the-boat attitude she would be destined for sainthood. She had a great sense of humor and a fantastic laugh weathered by a lifetime of smoking – her laugh still rings in my ears today, when I imagine telling her about my first attempt at her pot pie or some funny story about the kids. I can still hear her gasp, if only she knew how colorful my daughter’s language was.

She was a true romantic at heart, she was my confidante and the one I turned to most often to share secrets and dreams and tales of loves won and loves lost. She was always eager to hear and always had the best advice. She was honest without condescension – when once she told me the importance of making my husband first in my family, or that my hair really did look better short.

During my years at NYU we wrote letters back and forth – shared anecdotes and the day-to-day news like my registering for classes and her new sewer going in. Her reminiscences of her teenage trips to New York to visit her parents – who lived and worked there – meeting soldiers in Central Park, New Year’s Eve in Times Square.

She was modest and sensible – she wasn’t much for fancy clothes or a life of grandeur. She married the love of her life in her early twenties and enjoyed many years together, until his untimely passing in 1982 at the age of 56. She would spend the next twenty-seven years missing him, honoring him and just wishing she could hug him.

In all my life I only saw her grieve twice, when Pop-pop died and I saw her red-eyed and stoic, surrounded by the women in the family. And again – when she watched her second son finally succomb to cancer. She was devastated but handled his memorial service with far more grace than her blubbering granddaughter.

I remember the joy she expressed at the news of my first child: she was to be a great-grandmother. She was thrilled. And the first time I placed him in her arms gave me as much joy as I know it did her. Family was always so important to her, and we never had to wonder where we stood with her.

Two years ago today Nana went home to the Lord, to her room in His house with “Danny” and her son Barry. I wish I had the chance to sit with her one more time, to see her beautiful sparkling blue eyes and share with her what’s going on in my life and ask her what she thinks. Because it matters. I want to tell her how important our bond has always been to me – how much I loved and valued her. In all my life, she was an anchor – as much as mom and dad were. All I have left now are her pictures, a handful of letters, an afgan she made me 12 years ago that I often wrap myself in and a lifetime of memories. I hope I’ve made her proud.

On Life: “Each year you grow up a little more and realize, life is not your oyster, you have to make it what it is.”

On Love: “Take it a day at a time and it is always best to be friends first and really like a person. Love and like are very close but you must first like a person to truly love them. You can love but not like and that never works.”

On material wealth: “Love, friends and family are much more important, and I’m sure you will find that out as the years go by.”

A Day in the Life

This post was written several months ago and never published.

7:00am – Test Ava, up for the day

7:05am– Check messages online for 10 minutes, get shower, wake up Owen, take dog out, put morning drug on to brew, feed dog, call pediatrician’s office for a CHOP referral, make breakfast for Owen, get him on the bus, run out to store for milk, put last two cakes in oven, get kicked, punched and screamed at while attempting to drag Ava out of bed, empty dishwasher, clean up last night’s dishes, test Ava and give breakfast bolus, take dog out, clean up the “landmines” from last night, drag trash cans back up driveway, finish breakfast, get Ava dressed.

11:00am– Start lessons

1:25pm– Test Ava after a blood glucose correction, blood sugar still high, now change pump infusion site, 25 minute physical battle ensues

1:50pm– Infusion set finally in, give insulin for lunch, take dog out and circle the house four times “for fun”

2:15pm– Lunch and 45 minute break for Ava, who watches back to back episodes of “Olivia” while I: snarf down lunch, scan today’s assessment and send it over to her teacher, pull out pork loin for dinner which is still frozen solid, search for healthy alternative for dinner, plan next educational craft, put on another pot of coffee

3:00pm– back to lessons with extremely distracted 5-year-old, complete worksheets at a snail’s pace until school bus arrives with Owen, take dog out, finish lessons, call a friend and leave a message, begin “classroom” cleanup, friend calls back and enjoy half-hour chat which is interrupted several times by one crying child (hers) and one screaming child (mine), dog barking and finally a blood sugar test

5:30pm– She is low… give lollypop and take dog out, get mail, prepare simple, cholesterol-free, non-pork dinner, test Ava’s blood sugar and give insulin, feed dog

6:10pm– request, beg, cajole, threaten and finally scream at kids to quit Nintendo DS and Wii so that we can eat dinner, finish dinner, clean up, fold load of laundry, transfer wash to dryer and start a new load, clean cat box, take dog and kids outside

7:45pm– husband home, re-heat dinner for him, drag kids and dog inside, test Ava, give snack, get her in the shower, teeth brushed, dressed for bed, turn on her show, put laundry away, get Owen in shower, pull a fresh insulin pump cartridge, read over PA Cyber Parent Handbook while supervising a third viewing of Fred: the Movie (oh my gammit! this movie is horrible!)

10:00pm– last blood sugar check before bedtime, she needs a snack, brush teeth again and put her to bed, then put Owen to bed, fall asleep next to him

11:45pm– wake up for a recheck of Ava’s blood sugar, watch latest episode of Survivor on Demand, take dog out one last time, go back upstairs for another blood sugar check and…

1:35am finally, to sleep.

Will She Grow Out of It?

That would be the number one question people who don’t know about diabetes ask me.

The answer is…. NO. Other questions often revolve around what she can and cannot eat – I guess she can’t have sugar? Is she allowed to eat cake? Admittedly, that was one of the first things I thought of while I waited in the doctor’s office, holding her limp and sweaty body. She’ll never be able to have birthday cake again. I knew nothing that day about diabetes, except that there were three types, and that I was going to have to give my daughter shots every day. I did know that there was no cure.

I got my crash course in 3 days at the Children’s Hospital of Philadelphia. And after that, they sent us home with all our diabetes supplies, education books and a direct line to our discharge nurse. But essentially we were on our own to navigate our way through carb counting and food boluses, testing blood sugars and correcting high numbers with more insulin shots. It was scary, emotional, confusing, scary and exhausting. Did I mention scary? Whereas most human conditions are managed primarily by doctors who give instructions and prescriptions and tell you exactly how much to take and when – diabetes is, and has to be, primarily a self-managed disease. YOU – the patient and/or the parent – are responsible for your own or your child’s care, dosing and testing. Because insulin needs are determined by so many factors and are constantly changing, day-to-day and sometimes hour-by-hour.

There are 3 types of diabetes: Type 1 (also known as Juvenile or insulin-dependent diabetes), Type 2 (also known as adult-onset diabetes) and Gestational. Ava has Type 1.

So… what IS diabetes? The main difference between Type 1 and Type 2 diabetes is that the pancreas in Type 1 stops making insulin. Insulin is responsible for maintaining our blood glucose at healthy levels. These little cells in the pancreas, called beta cells, make insulin. In Type 1’s, the body doesn’t recognize these cells as its own and begins to attack them… eventually destroying all of them. Without enough insulin to bring it down, the blood glucose levels begin to go up. The most common signs of Type 1 diabetes are constant thirst, frequent urination and, because insulin is not present to direct sugar into the body’s cells for energy, the body breaks down fat for energy – which causes weight loss.

Ava’s most obvious sign was the constant thirst – she was drinking water like it would all be gone tomorrow forever. Hmmm…. I thought, that’s strange. What is it that causes this? I thought. But I quickly put it out of my mind. I couldn’t bear to think of anything being wrong. Oh the guilt I have over letting this fly by! And the other sign was the frequent urination – she was saturating diapers every night for a week. These diapers were failing at their job miserably too – I’d wake to find her pajamas wet, and the bed too. She had some weight loss – but it wasn’t as noticeable as the primary signs. Blood glucose (also referred to as blood sugar) levels of a non-diabetic should fall between 80 and 120. Ava’s on diagnosis: 416.

In Type 2 diabetes, insulin is still being produced but the body is unable to use it efficiently. The insulin just doesn’t work as well. Type 2 is due partly to genetics, but is also an effect of diet and lifestyle. The symptoms are similar to Type 1 and can be: unusual thirst, frequent urination, low or no energy, and frequent infections, or even no symptoms at all – just a high blood glucose reading on a routine screening. Type 2 can be managed – and some believe even reversed – through diet, exercise and, in the case of overweight, weight loss. Often oral medications are prescribed to increase the body’s sensitivity to its own insulin. In more advanced cases, Type 2’s will eventually take insulin too.

How did she get it? We have no idea. Causes of Type 1 can be linked to genetics, environmental factors and often (though not always) is kicked into action by a virus or illness. Ava was not sick before her diagnosis. Unless her pneumonia back in February started the autoimmune response that ended in June. As far as genetics go, I have one very distant cousin with T1 on my dad’s side. So does that mean I carry the gene? Maybe. The environmental factor is a curious one. Consider this: there are 3 children (including Ava, had she attended public school this year) – THREE – who ride the same school bus with Type 1 diabetes. All of these children born and raised in the same area, being diagnosed by age 5. Hmmm. Anyway, nothing we did or did not do – caused Ava’s diabetes.

So what do we do? Ava wears an insulin pump, which delivers a pre-programmed dose of basal insulin every 3 minutes. Basal refers to the insulin required to maintain blood glucose levels 24 hours a day, whether one is eating or not. This is how an insulin pump mimics the pancreas. Whenever Ava eats, her blood sugar is tested, we calculate the total carbs, and input those numbers into the pump – and the pump calculates a recommended food bolus (a one-time dose of insulin to cover a meal), which we manually enter and press “Go.” This insulin takes about fifteen minutes to “get started,” which is why we wait to eat. If her blood sugar is high, we wait longer.

What do we worry about? It may be easier to say what we don’t worry about. We worry about the fat she eats, which raise blood glucose hours after she eats it and long after insulin is done “working” (insulin boluses peak at 2 hours). We worry about cholesterol levels and hers, at age 5, are already elevated.

We worry about low blood sugars – which make her emotionally unstable, irrational and physically combative – and, if left untreated, will continue to drop dangerously low leading to unconsciousness and in the worst case scenario, death. It can and has happened. This is why I seem always preoccupied, distracted, seem like I’m not really listening and I’m always watching her, particularly when she’s running laps around the playground with her friends. Low blood sugars are caused by: too much insulin, not enough food, exercise, excitement and certain types of illness (as we learned last year during the 24 hour exorcist bug).

How do we treat them? Sugar. Juice, candy (not chocolate), cake frosting, glucose tablets, or complex carbohydrates like peanut butter crackers.

We worry about high blood sugars. High blood sugars make her feel sluggish, tired, achy, irritable and even nauseous – the feeling has been likened to having “the flu.” We treat high blood sugars with more insulin. High blood sugars are bad because they are linked to the complications of diabetes: cardiovascular disease, retinopathy (eye disease, blindness), neuropathy (nerve damage) and kidney disease. Think we don’t worry about that?

We worry about her being in school and away from our watchful eyes. We worry about her being away from us at all. We worry about her sneaking food – all too common at some point with children who have diabetes – as I discovered 3 days ago when I moved the couch and found sixteen empty fruit snacks wrappers.

We worry about her A1c – a quarterly finger-stick test that measures glucose exposure over the previous three months. This is like a mini progress report, to see how well she is maintaining her blood sugars – even though clearly they are not something we can control all the time, we self-critical parents often measure our success at fighting this disease with the A1c.

We worry about her annual blood tests – about her cholesterol levels and thyroid and Celiac panel. Diabetics are at increased risk of developing Celiac’s disease which, for all intents and purposes here, requires serious dietary changes – already a preoccupation – to a gluten-free diet. Think that’s easy?

And someday, in the blink of an eye, we will have to worry about the hormonal changes of puberty, which will present a whole new set of blood glucose challenges. And beyond – ultimately her growing up and out of the house, being on her own to manage her diabetes without us.

You’re handling it so well. You’re an amazing mom. Well, maybe so. I appreciate it when people say so, but in truth every day is a challenge with an already challenging personality – and every day my own personal demons try to challenge me to feel I actually am doing a good job. Some days feel like immense failures, others I remember the optimist I am and smile through the tantrums and the food wars. It is my job to take care of her, to teach her how to do the things I do, and show her how to live with a positive, I-can-do-anything attitude. Yesterday I wanted to run from the house screaming. Today, I’m smiling my exhausted smile and taking her outside to show her how beautiful life is.