Balancing Act

Other than Franca, there are a few people who know me very well to whom I look for friendship and support in handling the routine face-off between family, work, and pleasure, and of which of course in our house, diabetes plays a significant part in all three. Their opinions, advice and experiences help shape my own philosophies and behavior. So when not long ago one of these friends, a person of very strong faith and commitment, appeared surprised by my use of the yin yang symbol to represent Without Envy on the web, I responded candidly, but with some  nonchalance: It represents balance, I said simply and then went on in some disjointed, ineffective manner trying to connect this image of well-being to my concept of spirituality. After all, overcoming hardship has always been a process of moderation and mind-over-matter for both Franca and me, regardless of the circumstance. Why shouldn’t it be the same for diabetes? With the right focus, discipline and prioritization we could do for Lia’s diabetes what we had done with every other conflict that had entered our lives: we’d manage.

But days after my friend’s comment I decided to take a bit more time to consider the question again. What exactly was it about this icon of circling light and dark that I felt it could represent something as momentously crucial as raising a daughter with type 1 diabetes to live life to the fullest? Wasn’t the very concept of yin and yang — two equally dependent opposing forces, each giving rise to the other — in stark contrast to what we most wanted for our child, a life free of this damned chronic illness?

On top of that, I had spent less than an hour, at most, on the internet searching for an appropriate image in response to what had, in an instant, changed our lives forever. Granted in the weeks leading up to Lia’s diagnosis, the Tao philosophy of kindness, moderation, and humility had been a focus in my reading, so it had clearly been on my mind for some while. But where was the balance and natural order of opposition and equality in a life made more difficult because of a non-functioning pancreas? Where does the sunset end and the sunrise begin? How does the seed reach its greatest potential?

The answer: I don’t know.

I honestly don’t, which I suppose is the challenge. Living with reality. Creating a path of sorts through the universe, finding balance where you’re able and learning to embrace the whole and not the parts of who you are.

Lia has diabetes. That is a fact. Also a fact is her wonderfully ordinary life. This journal is where I write about how we manage the two of those things together. There are days where the words and our lives unfold easily, without tears, without envy, without too much of any one effort. Then there are days when they don’t, when it seems only darkness prevails. For comfort we look to one another, or find it in the community and from friends such as the one I mentioned above. For hope we turn to science. Both make the journey we’re on feel like we’re not so alone. Yin yang is there for those times we feel like we are.

Defying Gravity

When you first learn that a child of yours has diabetes, if there is no family history of diabetes or the root of it is not otherwise obvious, and it rarely is, the parent will do not only whatever they can to make life with diabetes better for the child but they may also work tirelessly to pin down whatever it was that caused it. There is nothing unnatural about this because if you were successful at finding the cause of the diabetes perhaps you could keep it from bringing more harm to the child or other children, which is after all a parent’s first responsibility: keeping children safe. Of course with diabetes this is impossible to do and giving up on the search is usually the most helpful advice anyone can receive in terms of finding the origin. Not all of us, myself included, ever fully reach that point but it is helpful to know that the odds are stacked against us and any tidbit of information that helps shed some light on the topic is a gift.

What is possible, almost always, is for both parent and child to accept the situation for what it is and deal with it as best you can. This is important for several reasons but mostly because it is the reality and no good comes of hiding from what is real. Always in the end the truth finds you. Once you do this and are successful enough at it you can find little ways to defy the life-and-death seriousness of the circumstances and make good on the promise to live life to the fullest.

This last week we met with the reps of both Medtronic and Animas to decide which pump best suited Lia’s purposes. We had attended a class at our Endo’s office to hear spiels from the three top suppliers and had settled on these two, but were finding it a difficult decision as there were characteristics of both that we liked. So we invited them each out to the house on separate days to sit with Lia and talk about their pumps. Over the last few months we had made ourselves knowledgeable about pumping through books; and the internet and online diabetes community had provided us with a wealth of information and first-person experience. But nothing, we felt, could replace one-on-one, live conversation. In this way, we could relate our own experiences with food and insulin and the effect both have on Lia’s blood sugar and use these as our foundation from which we might sort through the gimmicky talking points and uncover useful information that would truly help guide us in making our decision.

Our efforts were not lost on Lia, as many of the things we do or say are not. During one of the sessions I looked over at where she was sitting in the small chair she had pulled up for the conference and I noticed she was holding a clipboard. She was making notes on it as the rep talked to us about her pump and afterwards, I asked her what she had written down. She handed me a single sheet of paper with the title: Cool things about the Animas scribbled at the top, and this, in her own words, is what followed:

  1. It allows me to sleep in.
  2. It lets me cosumize <customize> my dose.
  3. Let’s me manage things
  4. You can disconect for an hour and be flat.
  5. Have an infushun set.
  6. It has safety
  7. You can redial it.
  8. I can get a monitor from a long way away.
  9. Your water proof.
  10. Go to 0.025 units.
  11. It can tell you to check for keytones.
  12. Back up pumps.

Lia has never asked why she has diabetes. She has on only one occasion questioned what caused it and when given the answer equivalent of Who Knows, she walked away fine with that. She’s that kind of kid. A realist. A survivor. Don’t tell her it won’t hurt if it will, she will see right through that smoke screen and if she doesn’t she will the next time. Her own experiences have taught her that too.

A few weeks ago had I witnessed her writing this kind of list about a tiny little box designed solely to help keep her body functioning the way nature intended I would’ve mourned and written about her lost freedom and innocence. For sure there will be moments for that again, brief but intense outbursts of grief, frustration, even anger at her diabetes, at science and the medical community that has failed to find a cure, at the inability to uncover what caused it, and for how Lia has had to grow up much faster than anyone would want for a child. But it is this kind of thinking that it takes to move past the sadness and shock and get on with living. If a little blue box will help with that, then all the better. Just as long as it makes you waterproof.

A Walk in the Park

With Lia unable to attend the JDRF Walk to Cure Diabetes because of stomach ills the morning of, we decided to host our own and invited some friends to participate in a Walk to Cure Liabetes this past Sunday at a local park. It was Mother’s Day and the weather that afternoon was gorgeous and the park was crowded with families and everyone was happy. After a short walk we ate picnic dinners and listened to a free concert that was being presented by the town. There is much more I could write about our day and the feeling of community which it brought us but I am happy, on this one occasion, to let a few pictures speak for me. For this and more pictures of Without Envy, please check out our recently created Flickr page.

Can’t Take My Eyes Off You

The bed shuttered slightly as the train passed out of sight in the dark just down the hill from my sister’s house. Franca and I were sitting on either side of Lia, holding the hair back from her face as she vomited again into a wastebasket. The nausea had come on just after midnight when she’d woken from sleep with a whimper, then jerking upright in the bed and clutching both hands to her mouth we hurried with her to the toilet. The spells of sickness continued every thirty minutes or so and after a while we stopped making her get up and shuffle through the hall to the toilet while trying to catch what we could with a towel and I carried the wastebasket to the bedroom and set it beside the bed. We checked her blood sugars and felt for a fever, and believed by the looks of the contents she’d thrown up that she was sick because of something she’d eaten, a clementine perhaps, or a cracker. By morning the vomiting had ceased and Lia said she felt better. She asked to get up and we did, relocating downstairs to the couch, but after a few minutes she was back asleep. Two hours later when she woke again, her urine tested positive for moderate to large ketones. I looked at Franca, she looked at me. Both of us knew what was coming.

We were there visiting my sister and her family for the weekend to attend a JDRF Walk to Cure Diabetes. It was our first Walk since Lia had been diagnosed and we were excited to be participating in such an event and moved by the opportunity to see and meet other people so intimately connected and familiar with juvenile diabetes. With my sister as captain, we’d formed a team, collected donations, had t-shirts designed and printed. For Lia and everyone of Team Liabetes this was our chance to experience firsthand the compassion, commitment, and community of which we all now belonged. But by now everyone was awake and there was a collective sense of dread in the room. No one mentioned the Walk. We knew we had to get fluids in her to bring down the ketones and we focused on that while we waited for the nurse hotline to call us back. So then Franca filled her in on the details and the nurse confirmed what we both had been thinking, that Lia should go to the hospital.

Hospitals, I think, especially emergency rooms, are typically not very good places for people who are sick and wanting to get better quickly. They are cold and impersonal, with form-letter questions offered and responded to in haste and in some cases not asked at all and therefore let unanswered, which may be okay if what you need is a broken bone set — all the proof is in the x-ray — but in caring for chronic illness you have to be on your guard, and in the overheard words of the doctor treating Lia, we looked like a couple of novices. Had I heard her then I might have had something to say about that, but later, after we took her back to my sister’s, well after the Walk had ended, it occurred to me that it wasn’t our lack of experience that had gotten us in trouble. It was our confidence, and it started really before we’d even left our house.

When you do something day in and day out, hour by hour, minute by minute, it becomes routine to you, and though it seems the first rule of diabetes is that there are no patterns, our watchdog treatment of it had become second nature to Franca and I. Checking blood sugars, monitoring food intake, giving multiple daily injections, observing activity, evaluating temperament, watching for signs of physiological distress. We’ve learned in the last four months to do these things in the dark, while half asleep, at work and in keeping a house and while struggling to preserve a strong hold to our family’s non-diabetic identity, and though we never feel like we have it licked, we do work hard at maintaining — a word I hesitate to use — Lia’s blood sugars.

The trouble with travel is believing that the confidence you carry at home is the same one that comes with you when you go to another place. I knew that it wasn’t from when Franca was gone to France. It may look and feel like confidence but away from home routines crack and break, they fall apart. There are too many new things to consider, new people, new foods, new lifestyles. If you let them they will get in the way of what has worked for you in the past and instead of having the effect you’re familiar with it has the opposite. When that happens it takes great courage to move beyond it.

We think it was something she ate, we said. Plus, there was lots going on, the car trip, then we stayed up later than usual. There was other company too, lots of running around. It may have just been the excitement.

Did anyone else get sick? the doctor asked.

No, just Lia.

The doctor looked over her vitals, checked her ears, peered down her throat. Asked her to take deep breaths. She stepped back and wrapped her scope around her neck. I knew what was coming and had already cautioned the doctor that it wouldn’t be easy. Lia would soon know this too.

The doctor looked down at her as she spoke. Well, little miss, we have two choices.

Okay, Lia replied.

We need to get some fluids in you to help your body get rid of those ketones. One way of doing that is for you to drink lots of liquid and stay here for five or six hours while it does its thing. The other is you let me put in an IV and you’re out of here in two or three.

I can go back to my aunt’s then?

That’s right.

Lia looked thoughtful. We had already talked about this, about how when she’d had an IV before, on the day of her diagnosis, her body was severely dehydrated. Then her blood vessels were collapsed and very thin, it’d been very difficult to insert a needle into them. Today was different. Today she was much better, stronger and it would hurt but not like before.

Lia made her mind up and when she spoke her voice sounded strange, far too grown up for the small little figure sitting up in the bed. Then I’ll take the IV, she answered.

The doctor nodded and left to go put in the order. Lia looked over at me and her mother.

I didn’t know what to say to her. Somehow sorry was just not enough.