A Simple Question

Things are getting better now, aren’t they?

I was standing outside my daughter’s school preparing to go in for a Valentine’s Day party when my sister asked me this question over the phone. I paused only briefly, my hand on the door. It had been seven weeks since Lia’s diagnosis and my sister and I had been talking about the management of her diabetes, but for some reason her question had caught me off guard. My very first impulse was to say, yes, yes, of course, things are going much better. To say otherwise would make me sound weak and incapable, a whiny victim to the situation. But because her question, when she asked it, had come at the end of our conversation, I was able to let it go until later in the day when I forced myself to revisit it.

Things are getting better, aren’t they?

It doesn’t sound like a difficult question and though my sister had the best intentions in asking it, it is not, I think, the kind of question that people affected by diabetes like to consider. Because without a cure, no is the only correct answer: No, things are definitely not getting better.

But on the one hand they are. We are better for having the knowledge of what we are up against, much like the early-yet-shocking discovery of a water leak is to a soon-to-be-shipwrecked sailor. Knowing is better than not knowing. You can react to such information. We are better for having a greater understanding of what diabetes is, for knowing how Lia’s body is unable to convert food into energy, how when this chronic condition raises her blood sugar, she turns thirsty and tired and irritable and how if it’s left untreated will cause her serious health problems. We are better because we discovered her illness sooner than later, so she is not part of the millions of people with undiagnosed diabetes getting sicker and sicker by the day. We are better because we have all, especially Lia, moved past the shock and fright and pain of the diagnosis and are taking very seriously every single daily aspect of her life-saving therapy. In these terms, yes, things are better.

Things are better too in that Lia’s classmates understand and care about her diabetes, as do her teachers and the school staff. We’ve become better mathematicians, better nutritionists, better fitness trainers and food scientists, better planners and packers and time managers, better family crisis counselors. What with all our focus on diabetes, we’ve even become better attention-getters.

What hasn’t gotten better, and what I believe is at the heart of the issue, is that the question hinges on the now, not the future. Where every day, according to the American Diabetes Association, up to 65 adults go blind from diabetic retinopathy. Where every day 128 adults with diabetes enter treatment for end-stage kidney disease. Where every day 195 lower-limb amputations are performed due to complications resulting from diabetes. Where every day insurance and the cost of care too often dictates the treatment. Where every day children become adults facing a life expectancy 10 to 15 years shorter than their peers.

Yes, we are optimistic. Yes, we are managing. Honestly, there is no other choice, and while I can say that today things are getting better — right now, right here, at this very moment, having just spoken to Lia myself, things are just fine — in an hour or two, or a day or a month or a year or twenty, who’s to say?

What, other than our own diligence, will keep her safe?

What, other than our own initiative and self-discipline, will prevent her from suffering as one of the tens of thousands who fall to those grim, terrifying statistics?

We are getting better because to dwell on these things is to dwell to no avail, like that sailor now clinging to the outside of his raft while adrift in a raging sea. At some point you simply must pull yourself over the side and pray that rescue is imminent. For that, we need a cure.

14 thoughts on “A Simple Question

  1. Steve – Any parent of a child with diabetes has been in your shoes, has faced answering this question, and has likely come up with the same answers. I am one of those parents. I also happen to be the daughter of a person who has lived with type 1 diabetes for 54 years. My father was diagnosed in 1955 in a day and age when he was told he would not live to see 21. He is now 65 and is happy, healthy, successful and a beacon of hope for my 11 year old daughter who has lived with diabetes for almost 8 years.

    While I hold onto the hope that my father’s health and longevity brings me, I still experience those days when doubt taps on my shoulder and reminds me of what pitfalls might be in store for my daughter. Words don’t adequately describe what goes through a parent’s head when trying to hope for the best, but acknowledge that the worst is a possibility. Keep fighting the good fight. I’d like to say it gets better, but you already know about that. We do get better at adapting and dealing. We get better at acknowledging that we can’t answer all the questions, even those that should seem to have an easy answer. But eventually we make peace with that and our kids are stronger for it. Hang in there.

  2. I am so glad I found your blog (via Sixuntilme). As a parent of a newly diagnoedt Type 1 eight year old daughter it is a comfort to read the words of others in the same boat-just knowing that the things that cross my mind are on the minds of other parents is a tremendous comfort.

    This “new normal” of our family is a private battle shared by so many other families-and it is nice to remember that none of us are alone in it. My best to you and yours.

  3. Steve, if you haven’t found it already I strongly recommend the dlife site. There’s a board there where people are posting how long they’ve been diagnosed, and God bless him, one man was diagnosed over 50 years ago and has no complications. That’s the one stat I hold on to. My 9yo was diagnosed in July so you’re only a few months behind us. The only piece of advice I have is to watch out for what we’ve called the sudden anger phase. About 5 months in, my seemingly well adjusted kid started lashing out at everything for no reason. After a a week or so of this, we called the social worker who’s only comment was “its about time.” It’s gotten better since he’s switched to the pump, but apparently its a normal reaction that hits a few months after being diagnosed.

  4. Hi Steve,
    I just wanted to give you a real life “statistic”. I was diagnosed @ 13 years old, back before diabetes was managed as well as it is now. I was told I would have complications 10-15 years into my D-life. Next month will mark my 21st year with Type 1 and I am free of any complications. I have done my best, along with my parents, to control this disease (still hate that word) and haven’t always managed it well. But I am perfectly content being my own statistic. Sometimes all those statisticians would just like for us to see things their way.Take joy in those in the DOC that prove those stats wrong. 😉

  5. HI Steve,
    Thank you for this post. I feel this too, the unending wavering between ‘Yeah, we’re getting better’ to saying under my breath ‘Well, not so much, no, well, not really at all.’ I say one thing to people who ask and the other to myself, who feels at times we are ever inching closer to complications, no matter how tightly we control this disease in our daughters.
    My daughter was only 6 when she was diagnosed. It’s been over a year now. By the time she is a young woman, say, 30, she will have had Type 1 for close to 25 years. Yes, I see woman like Kerri out there, Kelly out there, who are rockin’ their lives with Type 1. I hold onto them as my hope and my guiding light that it will all work out. But I also know reality of it not working out and there are young women out there who don’t fare so well. It scares me at the same time it propels me onward. Does that make any sense? It’s such strange emotions to be feeling all the time.

    Thank you for your blog. I am glad to hear your voice in this DOC.
    Penny

  6. Steve: Thank you for sharing your stories with this ever-growing Diabetes Online Community. While I am not a parent of any child, I am a 31-year-old Type 1 who was diagnosed at age 5 and my wife and I are wanting to start a family in the coming years. Passing along this disease that I’ve lived with for 26 years – one that my own mom has lived with since her diagnosis at age 5 in 1958 – is a great fear of mine. But, I do take comfort in the current research, work the JDRF is doing, and simply this online community that connects us all. I echo what Bernard says in that a cure does seem more possible today than ever from my memory. In the meantime, this online community and resources such as TuDiabetes can help connect us all and deal with this, whether we’re newly-diagnosed or more of a “veteran.” It’s ongoing and often frustrating, but the hope can be found in so many different ways and places in seeing that we have the tools to manage this. We can live lives that are just as full, productive, successful, and fulfilling as anyone who isn’t diabetic. And our lives can inspire others and fuel the advocacy to keep pushing for a cure. That’s what helps get me through the days. I’ll look forward to reading your posts, keeping in touch, and sharing the D-O-C space with your family.

  7. Hello steve

    It’s true that the stats are terrifying. But these really do seem to be taken from people who are either long term undiagnosed type 2 or type 1 folks who have had to cope with much less medical advancement…

    I do not believe that it’s accurate to talk about significantly shorter and dreadful lives when looking at the current situation; however, what does haunt me are the facts that there is much about genetic predispositions to complications we do not understand, some of which pays little heed to good control. The other fact I know is that there are teens with type 1 who suffer already from vision and neurogical problems – not from outrageously bad control, but from not ideal control. For some, that’s all it takes.

    Beyond this tho there is the emotional stuff. And at heart, the real answer to your sister’s question is No. Things get more manageable and less traumatic. But dealing with it is relentless, heartbreaking and frightening. Not every second of every day- of course- but at no real point are things better. Dealable, yes. Okay by me, no!

    Thanks for the rawness of the post. I know where you are coming from!

  8. 40 years ago, I was a 7-year old newly diagnosed diabetic. Over the years I have learned that yesterday is over, learn something from it. Tomorrow will get here, but until it does, I can’t do much about it. If I do my best today, then my future will be the best it I can make it be.

    I think you’ll do just fine

  9. Steve, I’ve never been a parent with diabetes, just had type 1 myself. I’ve seen how diabetes care is ‘better’, and the likelihood of issues for me is much better than I thought it would be 37 years ago.

    Just remember a lot of those terrible stats are based on folks with type 2 who may have had diabetes for a LONG time without knowing about it. For your precious daughter (I know I’ve got some), she’ll be fine. Though that doesn’t stop us from worrying, that’s part of our jobs as parents.

    Try connecting with parents on online communities (DiabetesDaily.com, ChildrenWithDiabetes.com, TuDiabetes.com), they’re sure to have tips and answers to difficult questions.

  10. Thank you Leighann for your comment. I very much agree with and appreciate your support. It is through communities and advice such as yours that have helped us along in dealing with this successfully.

    As we struggle with the day to day (and I struggle with how to capture the emotion of it in words), I sometimes even lose the perspective of my intent behind this blog. It is first and foremost to do exactly what you say (and what appears in the tag line of my blog), to raise a child with diabetes to live life to the fullest. One day I hope our daughter and others will appreciate it and gain something from this endeavor.

    But also it is to raise awareness of this disease, highlighting to those who may not be familiar with diabetes to the fact that insulin and strict personal management is not a cure. It is better, yes, but those statistics are very real and they frighten me. Perhaps it is because we are new to this, perhaps not. Either way, I believe, as I’m sure you do, it is my role as her parent to understand them, to absorb them on her behalf, and to do all I can to change them. That is what science must ultimately do for our children.

    Somewhere in the midst of all that is balance, moderation, joy, and enlightenment, and that, I think, is our most important role as her parents, whether, as you mentioned, diabetes is a part of it or not. (To that end, I thoroughly enjoyed your flashback post today about flexitarians… it is a change we are considering undertaking this year ourselves, once the garden comes in and that damn banana tree out back starts producing some fruit 🙂

  11. Now that we’ve been dealing with this for almost two years (my gosh, has it been that long?) here’s my perspective.

    Is it getting better? Well, maybe not. But…

    It is easier to deal with. We are more proficient. We have the confidence to get things done.

    Please don’t get caught up in those statistics. Really, just wipe those from your mind. The reality is that your daughter’s and mine’s life expectancy may be exactly the same as other children of their same age. They have the benefit of modern science and treatment options that older people coming to the end of their lives now did not have.

    And all the horrible side effects you list? Our children may NEVER face these because we have good tools and much better treatment regiments.

    I’m not saying it’s sunshine and roses, but we can help our children have their best possible lives even if diabetes is part of it.

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