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.

5 thoughts on “Defying Gravity

  1. Thank you all for your comments on this. It is wonderful to have so much support as we work our way through — no not, through, that’s the wrong sentiment — as we work our way deeper into the care of Lia’s diabetes. We ultimately settled on the animas ping. I’m sure down the road we’ll be sharing our trials, joys, sighs of relief and cries of exasperation as this precious work of science becomes part of our daily routine.

    All the best,
    Steve

  2. Whatever brand of pump you decide on, it will change Lia’s (and your) life — for the better, I assure you. Yes, it is sometimes sad to think that such a young child has to be burdened with these decisions, but I choose to look at it this way: It is so good that she has these choices to make! I was dx’d with T1 at age 7 and that was 42 years ago, and believe me, the choices back then were slim to none…..I have been on the pump (first Medtronic, then Animas) for about 10 years now and it’s the best diabetes decision that I ever made. Thank goodness for the opportunity to make these decisions! Please give my best to Lia — I think her realistic outlook is absolutely the best one to have as she navigates her way through life.

  3. We went through the pump choosing process a few months ago and ultimately selected the Minimed. We were going to use the Animas because of the waterproof-ness, but the lure of getting a CGM was too much, and my 10yo was sold.

  4. She’s a strong kid Lia. I find that our kiddos who are diagnosed young frankly, are. I think it takes resilience, strength and courage just to see things as they are and not look back with ‘what ifs’ and ‘whys’ when in certain cases, they do no good for anyone. Moving on is all a part of life, right. Our kiddos know that. Might there be tiny blessings in all this D life? I try and find it.

    We started G on the OmniPod about a month ago. It has changed our lives and hers. I cannot say enough about it. 8-9 shots a day and now I remotely bolus her for meals and snacks and highs. At 2 am, no waking her up for a shot. Basal keeping her numbers in check better. We had to be ready for the pump though and mostly G had to be ready – it’s her body and her pump. She was. We continue on. I hope your journey is life-changing with the pump, for Lia and for all of you. Please keep us posted.

  5. Wow, your girl is strong! I know it can twist the heart to see her being to matter-of-fact. She shouldn’t have to deal with this so young etc etc. But look at her GO!
    Our children will rebound (in the non-D sense) much more quickly than us as they seem so much more programmed to live in the present. When we got home from the hospital on Monday Frank said, “I’m a star, aren’t I Mummy? ‘Cos I was brave”. Damn straight. As is Lia.
    I look forward to hearing all about it as we will be on the same road before too many more months, I’m sure.

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