November began with an incredibly divisive election period that didn't end with the shocking result on the 8th. The U.S. is still divided. But November is also Diabetes Awareness Month. Oh, the fun we're having. I'm feeling a need to express myself–not about the election because, while I have very strong opinions about it, I don't want to fight with anyone. I need all my energy to focus on where we are right now and where I what I want the world to be for my children in the future.
In order to move forward, I'd like to share an essay I wrote seven years ago. Ironic, no? It was the first thing I wrote seriously since college, well before I ever even considered trying fiction. It may have even been the impetus for my fiction writing – who knows? I've never shared it with anyone (not even my mom) because it was too personal, too intimate a peek into emotions I was ashamed of. Every few years I open it up and am shocked to know that those feelings haven't changed, that sorrow hasn't diminished. But in order to have a healthy future, we need to accept the past. And this is all just a part of the journey.
It Could Be Worse
Being a parent of a child with a chronic, life-threatening illness is like living in a constant fight-or-flight state. Except you can't do either one. Abandoning your child is unthinkable, and there is nothing to fight against. So you live. Each day. And you learn how to walk through the daily rituals you detest, to keep your child safe, giving them as normal a life as possible. It’s what therapists call ‘coping’.
But before that, there is denial, depression, anger, and all the other steps toward acceptance and the ‘healthy’ way of dealing with it that people talk about. It's been four-and-a-half years now, and I am nowhere near their definition of acceptance.
I accept that until there is a cure, my son will have to test his blood eight or ten times a day, using a device that shoots out a thick, nail-like needle, we poetically call a ‘poker’, to draw a drop of blood from his tiny, already-callused fingertip.
I accept he will need to wear a pump, an electronic insulin-delivery device, 24 hours a day, seven days a week, attached by a long, thin tube to the tiny cannula I insert into his tender flesh every two days with a long, thin needle. I do it while he is sleeping because I can't bear the look of fear on his face if I do it while he is awake. And the pain only wakes him up slightly, though I often wonder how it affects his dreams.
And I accept that I will never have another night of peaceful slumber. Because I’m always worried that tonight is the night his blood will not have enough sugar in it and he will have a seizure without my knowing.
Not until there is an end to this disease and to the control it has over our lives.
Is that enough acceptance to qualify as a healthy human being?
One of these days my daughter will wake up, confused at why I'm testing her blood-sugar in the middle of the night. She doesn't have diabetes. I won't tell her that ever since she was two, the same age my son was when he was diagnosed, I've been secretly testing her whenever the fear inside me gets too strong to subdue any longer.
And I know at some point, my son is going to be pissed off at me for making all those holes in him. Before he got the insulin pump, he needed at least five injections of insulin a day. That's 1,825 syringe-needles per year. As it is now, he pokes his fingers between 2,920 and 3,650 times a year. Add to that 182 different pump sites, full blood draws four times a year, and maybe 20 additional injections. That all adds up to approximately 3,491 new holes in his body every year. Makes it seem almost easy compared to the two-and-a-half years, pre-pump–of 5,114 holes each year. Multiply that times how many years he's had diabetes, and you get 19,767. Almost 20,000 punctures so far, and he's only six-and-a-half years old. By the time he's sixteen, it will be up to around 54,677. Yep, he's going to need to be mad at somebody and, I’m sure at least sometimes, that person will be me.
Occasionally, I imagine him at sixteen. He's going to want to impress a girl at the beach or something, and she's going to notice the tiny white scars all over his abdomen. Then later, she will see those same scars on his thighs and his tush (that's what I call it now– he, no doubt, will have a more colorful name for it by then). She'll already have noticed how tough and scratchy his fingertips are when he touches her cheek or when they hold hands.
On my less pessimistic days, I think of how lucky I am to have such an amazing little boy, who is intelligent, affectionate, and happy. I realize it could be worse. Much worse. I usually feel that way on the days we go to visit his Endocrinologist's office. It shares the waiting room space with the Pediatric Oncology office. The room is shaped like a “B”, with the reception being the straight line and two open circles overlapping off of it. We all keep to our sides. Endocrinology patients in one loop and oncology patients in the other – like we are afraid of catching what the other side has. Funny thing is, that's always one of the big issues other kids have with my son – they think diabetes is contagious. I guess it's the same for kids with cancer. We all should know better.
I pretend to look at the art on the wall across the room but am really trying to study the mothers. I don't know if I am fooling them or not. I imagine what it must be like for them to know that there is a definite possibility their child will die. There is a chance my child could die from his disease, but it doesn't compare to theirs. I am awed by them. Getting through the day is hard enough for me, and my son's issues seem trivial next to cancer. Those women, and their children, are walking heroes. I am sure the fathers are heroic in their own way as well, but strangely, I rarely see one of them in the office. Are they working hard so their kids have adequate health insurance? Or is the anxiety of even walking into the waiting room too much for them? Reminding them of something we all wish we didn’t have to think about.
I try not to look at the oncology kids at all, because I would feel horrible if one of them caught me looking. I bet they've gotten enough of that to last more time than any of us have here on earth. Especially the ones who no longer have any hair left.
I once saw a baby, I mean, Christ, she was a baby – maybe a year old, tops. Her mother was holding her in one arm while the baby played with a sticker the nurse had just given her. This tiny little person was wearing a bright-yellow sundress with red cherries or something dotted all over it. The women were smiling and giggling at her, and she was smiling and giggling right back at them. I couldn't watch. I had to look away because, despite their joy over this one moment in time, one second of simple, normal happiness, all I could think of was how horrific it was. The baby's face was too red, too bloated, and puffy – double the size it would've been on a healthy child. Even though my son barely had any hair at her age, I knew that her bald head was due to the chemo. It was too slick, too smooth, without a tinge of that fine, soft baby-hair anywhere on it.
I felt sick. She didn't make me feel sick – I did. The shame of not being able to look past the horrible side-effects of the treatment for the disease that held her, into the face of what I was sure was a wonderfully sweet little girl. The muscles of my abdomen clenched, but that didn't stop the feeling that my stomach had dropped a foot closer to the ground. I tried to find something else to focus on, something to distract me so that I wouldn't embarrass myself or them. So that I didn't have to look. They didn't deserve my reaction, it was disgusting. But with some time to think after hurrying away from the offices, averting my eyes from everyone, I finally decided that it was probably a perfectly-normal, perfectly-disgusting thing to feel.
I have a right to hate a disease intent on hurting or killing a child. I have a right to hate the kinds of treatments that have devastating side-effects, even though I know it's the only way – the lesser of two evils and all that. It doesn't change the fact that they are all hateful and disgusting.
On my almost-optimistic days, I can see a silver-lining to childhood diseases. I know, right? It surprises me too. Of course, it all goes without saying that the silver-lining is brightest when the child makes it through alive and without severe complications. My silver lining is that my kid is really great at math and far more mature than other kids his age. I blame it on the fact that he has been reading the three-digit numbers from his blood-glucose meter since he was two. That, and all the other shit he's had to deal with and be responsible for.
Somebody else's silver lining might be that their family is stronger and closer than they were pre-diagnosis (sadly, that one doesn't apply to my family). They might be better able to appreciate the little joys in life, take each day as a gift, stuff like that. It sure as hell isn't enough, but at least it's something.
I guess another one could be that we all come out of adversity stronger and wiser. But I'm not strong. And I'm not wise. Then again, I'm not really out of the adversity part yet, am I?
It Could Be Worse. Why do we say that? Why does it make us feel better when we compare our pain to someone else's?
7/6/12
When I wrote this essay, my son was six and a half. He’s now nine. Not a lot has changed. He’s happy, healthy, and as smart as ever. He still wears his pump 24/7 and tests his blood-sugar 8-10 times per day. We are still involved in the diabetes community—going to conferences and support groups. We even go to a week-long diabetes camp where everyone knows how to count carbs and no one feels the need to hide their daily diabetes care. It all helps him, it all helps me, and it even helps his little sister, although she detests the yearly blood draws to look for diabetes ‘markers’ she may develop.
But I still hate why we have to be there. I don’t see that changing. I still cried when I reread this essay, remembering the earlier days and being reminded of the future. Since I wrote this, my son has about 9,500 more holes in his body. But we are coping and, thankfully, haven’t had to deal with any emergency hospital visits, complications, seizures, or comas. So, yes, it could be much worse.
4/7/16
Today is my son’s eleventh “dia-birthday,” - what we affectionately call the anniversary of his diagnosis. Tomorrow he’ll turn thirteen. A teenager. Wow, I will have a teenager. One who is so much smarter than me, except for those moments his hormones turn him into someone else entirely and his decision-making skills drop below zero. But he and his little sister are my life and the two things I’m most proud of.
Diabetes-wise, this year has been a challenge. A lot of his daily care is left up to him, and I try not to hover too much. Unfortunately, that leads to him forgetting to test his blood-sugar, give himself insulin, or even reattach his pump after he takes a shower. How someone can forget to do something he’s been doing countless times per day for almost his entire life is hard to understand, but supposedly, it’s common among type-1 kids his age. One of those lapses of memory lasted long enough to send him to the hospital for a few days. A few others sent him to the floor, sick and vomiting, with an endlessly worried mother giving him injections, water, and testing his blood for ketones, the toxin released when a diabetic’s blood sugar is way too high.
Not a day goes by that I don’t wish this disease didn’t exist, that my kid didn’t have to deal with it, that no kid had to deal with it. Professionals keep telling me the cure is within sight, in ten years someone will find a cure. Thing is, I’ve been hearing the same prediction since he was two—eleven years ago. Someone is either unaware of what ‘ten years’ actually means or it’s all just wishful thinking.
Life has taken huge ups and downs since I wrote this essay, and our lives are more complicated than ever. A family member had a life-changing event, then another, and another that have affected all our lives. A close friend, who has spent her entire life dealing with a rare and sometimes debilitating chronic illness, has taught me how little age matters in terms of maturity and strength. I’ve had my own injuries and hardships. But if I listed all of them and all the other people who don’t deserve the crap hands they’ve been dealt, I’d be typing for days.
I don’t know what the future will bring. I don’t know what will happen in the next ten years. Or twenty. Or even next week. So I try my hardest to live inside each day, to not attempt to predict my son’s future, my daughter’s, mine, or everyone else I love’s. I try to focus on the fact that my kids make me laugh harder than anyone else in the world, and that’s saying something, because the rest of my family are hysterical too.
I just remember how much I am loved and how much my children are loved. How deeply I care about the people around me. That’s all we can really count on, isn’t it? Life could take a swerve at any moment, but that love never does. And it never will.
When holiday shopping this year, instead of giving people crap no one needs or uses, please consider donating to causes you and they believe in. Almost every charity has a way to “gift” in someone's name. You'll feel great, the recipient will be honored, and the world will be a better place for all of us.
Happy reading!