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Look Forward to Today.

We stand together, even when things get really tough.Last night, I woke up at three in the morning and listened to the sounds of the crickets outside my bedroom window.  Not a human sound could be heard.  When I closed my eyes, I could hear my own heartbeat.  And even though I don't spend the majority of my time worrying about diabetes complications, my mind went immediately to the news I heard yesterday, about another young child with diabetes taken while she slept.   (The both tragically named and tragically accurate "dead-in-bed" syndrome was to blame.)  She was 13 years old, her parents were active and engaged in her care, and there wasn't anything that anyone "did wrong."

The Children With Diabetes website describes "dead-in-bed" happening "after having [the patient] having been observed in apparently good health the day before.  No cause of death can be established."  The article also goes on to say, "In a recent review, clinical reports strongly suggest that nighttime hypoglycemia is a likely prerequisite of the event, but that the death is sudden and probably caused by cardiac arrhythmia. It is postulated that early signs of nerve damage (autonomic neuropathy) can result in a disturbance of the autonomic nervous system." 

I don't know what to think.  I can't comfort myself with the fact that I have access to a blood glucose meter and I'm testing my blood sugar regularly.  Or that I've been to the doctor more in this year alone than I have been in all other years combined.  I don't feel confident that I have 24 years of what some have called "borrowed time" under my belt.  Even the CGM, with its protective bells and whistles and warnings of both highs and lows, doesn't offer me solace right now.

I felt scared.  I'll admit it.  I felt so sad for her family and for all the families who have had to weather this kind of storm.  Because there isn't any rhyme or reason to this disease.  Even when signs all point to "fine," there's a chance your body can just give out.  And that's something that keeps you up at night.  It's something that kept me up last night.  My brain was spinning and grief for a family I didn't even know was prickling.

This is scary, without a doubt.  This is the kind of stuff that I, as a blogger, want to pretend doesn't happen.  I want people to find my site, and the sites of my fellow diabetes bloggers, and feel comforted because we're all alive.  Our health levels vary, but we're all alive.  And the idea of the parent of a newly diagnosed child stumbling upon this story breaks my heart, because this is not the rule of diabetes.  

Dead-in-bed is the exception.

I wondered if premature deaths in people with diabetes are rising, or if we're just hearing about them more often.  I used to be the only diabetic I knew, but then the Internet introduced me to hundreds of others living with or caring for the same disease.  And now I have an extended family of people with compromised immune systems.  So I wonder if these tragic deaths have been occurring for as long as I've been diabetic, only I haven't heard about them so readily because information didn't spread at the rate it does now.  And as awful as the feelings must be for those who have lost a loved one, I wonder if it would be worse to not have the larger diabetes community to lean on for support?  Would I feel better not ever hearing about these difficult times or would I rather deal with diabetes alone?  I think everyone's experiences vary, and emotions run high in times like these.

I thought about my daughter, asleep in her crib, and the instinct to protect her from everything rose up in my throat.  But I can only do so much.  I can only protect her, and myself, from so many things.  The rest becomes part of life and part of circumstance.  I can't make myself lose my mind with paranoia, even though I love her endlessly.  I need to let her live her life.  Just as my mom lets me live mine, despite her fears as to what role diabetes may play.

We do our best, as parents.  As children.  As diabetics and the caregivers of diabetics.  As people.  Tragedy will come and go in all of our lives, but the best is all we can do.  Life goes on for those of left behind.  And we can't exist in fear.  Even though it can be so scary at times.  We owe it to ourselves to be as educated about diabetes as we can, as empowered as patients as we're able to be, and as healthy as we can manage.  We lean on one another for support in these difficult times, and we look forward to today for inspiration. 

Hug your loves ones today.  As many as you can (even your cats).  Because when it all boils down, we're all we've got.

Comments

Very well written.

Amen.

This is a lovely post, Kerri. Very well written and heart-felt.

I felt so much sadness & fear for the family who lost their precious daughter yesterday and for all the others before that.

"Tragedy will come and go in all of our lives, but the best is all we can do. Life goes on for those of left behind. And we can't exist in fear. Even though it can be so scary at times. We owe it to ourselves to be as educated about diabetes as we can, as empowered as patients as we're able to be, and as healthy as we can manage. We lean on one another for support in these difficult times, and we look forward to today for inspiration." Perfectly stated.

You always have a way of writing down what my heart feels...Thank you for sharing Kerri...

What a beautiful post Kerri.

nicely done. As I sit here crying... thinking of my girls who one was high last night.
What comes out of this tragety is more of an awareness, tightening our belts a little more, and moving forward.

How heartbreaking. I can't even imagine how parents of children with diabetes deal with this.

Thanks for this post. I'll be carrying it with me all day.

Kerri, great post. Yes, I think our on-line community spreads information more readily. I am grateful for it...truly.

We cannot live in fear. I agree. I guess what this news inspires me to do is to advocate and educate just that much more....and yes, my hugs will linger a little longer when embracing my children and all whom I hold dear.

Thank you, Kerri.

As the mother of a CWD, yesterday's news is a harsh reminder that, no matter how vigilant I am, there are still circumstances that exist beyond my control.

When it's a car accident or some other tragedy, it's a brutal reminder as well of just how fleeting the moments of life can be.

But...when it's diabetes....it's personal on a much different level.

After your child is dx, your life becomes consumed by it. Your brain suddenly needs to learn how to act like a pancreas. Your heart begins to process every minute life experiences from a new angle ... school parties, sleepovers, dinner with the family ... EVERYTHING that is so ordinary becomes extraordinary.

Like kissing your sweet child goodnight....it's such an ordinary part of the day. But, in the back of your mind, you know it's always there. Diabetes and those extraordinary circumstances.

So, DOC, thank you for bearing with us as honor Eilish and her family

Soon enough, it'll all be "normal" again. The FB pictures will return to those of happy smiling children. The blog posts will return to the crazy moments of life raising D. Twitter conversations will pick up where they left off....

But, for a few days, our hearts will ache. Our tears will fall. Our fears may be highlighted ....because....

Today is just another ordinary day dealing with extraordinary circumstances.

God bless you all.

Kerri, thanks.

This is just terrible.

Could we raise awareness of this type of tragic event? I hope that someone is researching why this happens and ways to reduce the risk.

It is so sad and so frightening. I too spent much of the night thinking about how to protect and prepare those I love for the unpredictable in our lives with diabetes. It is a tough place to be....thanks for writing about it.

Beautiful post. Thank you.

Such awful news. I feel so grateful for everything I have and everyone around me. I will keep this family in my thoughts to today.

Kerri,
Well written post.I worry soo much about my husband, it's overwhelming at times.We have to remind ourselves to " Be Here Now". Cherish every day. However, instances like this morning when he awoke with a 49 sugar, the apple juice was immediately rushed to his side.It reminds me how delicate this disease is.I am literally shaking as I'm writing this post.We are blessed to have talented bloggers like you to express our emotions.

Thank you Kerri, for being able to express so beautifully what so many of us are feeling. YOU are an inspiration to so many.

Thank you for your heartfelt words. Thank you.

I couldn't have said it better...thanks for writing this. And I'm with Bernard. I'll be pointing people to this post as a start.

Thank you, Kerri

Thank you, Kerri

Nicely put Kerri. As much as I hate to hear about this stuff, if we can show the family left that they are thought of and loved, then I am okay to deal with the hurt I feel. For them and for all diabetics.

Well said. :(

I know you and I weren't the only ones who stayed awake last night. I, like you, wonder if the cases of death are rising, or if we are just finding out about them more quickly. Either way, the tragedy hits home. Its scary. It unsettling. And it's heartbreaking. And I don't want to admit that it happens. But it does. And it terrifies me when I think about it too often.

Well done. Thank you Kerri for putting it in such a way that we all relate.

Kerri:
I'd like to reach out and hug you right now. I know all too well the fear that you were experiencing when you wrote this post, because I was born in the deep end of the gene pool. Along with diabetes and breast cancer, and about a dozen other things that take way too much of my life and energy, I have a condition known as congenital long QT syndrome. It is a condition that pre-disposes me to a fatal cardiac arrythmia. My grandfather, father and brother all died of it and many of my aunts, uncles and cousins. As a single mom, I had to address the "what if" with my daughter and even though it was terribly frightening for her. She knew who to call and where the information was and even how to use a debit card...just in case mom doesn't wake up. It was a horrible thing to have to teach a child, but the thought that she wouldn't know what to do was more horrifying. I hope someday she'll forgive me for it. The one thing that I've learned through all of this is that I have right now. I can't pin things on tomorrow, I only have right now. Still, I know how you feel. I have laid awake at night feeling my heart beat, knowing that there will come a time when the next beat doesn't happen. Until then though, I kind of suck at dying and I have right now.

Kerri,
I am that parent of a newly diagnosed child. My beautiful, perfect 2 year old was diagnosed three weeks ago. I did stumble across the "dead-in-bed" story on facebook. I've been crying all morning and feel like I just can't do this. Thank you for your post. For today I will hang on to your words that this is the exception not the rule.

Thank you for this.

My bg reading about 10:30 last night was 212. I didn't correct it. I should have, but I didn't.

I woke up this morning at 93. I'm glad I didn't correct.

You arent the only one who was freaked out and couldnt sleep. I have everything about this disease sooooo much and I was perfectly fine in my bubble until I read about this little girl and the dead in bed situation. FREAKED ME RIGHT OUT!!

I cried, for the little girl, for not having this disease cured, for fear.

You're right, all we got is today. Live life to the fullest and make the world proud.

Hi Kerri,
Thanks for writing and posting this. I hadn't heard about this particular story yet. Of course it hurts to read and to feel that at any moment, it could be one of us. Just one more example of the reality we all know and deal with every day, but it still aches.

So often I read your words and think "She's inside my brain! That's exactly how I feel/what I think/what I'd write" about this crazy, absolutely unique experience called T1d. I'm 38, diagnosed at age 7, w/ Ping and Dex7 and trying really hard to get that damn HbA1c below 7. Sigh.

Maybe it helps to think that while the tragedies are the exception, WE are the rule: awesome, passionate, smart, fun, loving people who got the fuzzy end of the stupid sugar-free lollipop. We're the rule--our physical selves are the exception.

xoxo, Sarah

Kerri,

Like Laura, I too am a mother of a T1 child who was diagnosed a little over 3 weeks ago ..... my 8yo daughter, Ellie.

I have to admit, reading about this beautiful girl's death is devestating, aweful and too-close-to-home tragic. Your blog is just one of many I have read over the last 24 hours who have mentioned the death.

What do I hear? Well, besides the anguish over trying to imagine the grief the family must be feeling; I also hear anger and frustration and disbelief. Emotions that call people to action. Actions that will cause people to hear the story and gain a better understanding of the NEED for a cure for T1 Diabetes. Action that will drive the scientists to work faster; harder.

In addition, sharing this story provides information to a newly diagnosed family like ours. It gives me purpose to focus and figure out a plan for our daughter and to get up to test when those alarm clocks ring at 2, 3 and 4 in the morning. I know I cannot prevent what happend to Eilish, but I can be aware and know the complete reach of the disease.

Thank you for sharing your thoughts, as a T1D. Your words give me strength and hope that my daughter will grow up to be as healthy, smart and articulate as you.

Great Post Kerri! I have had two incidents with night time hypoglycemia. Both times I was with another person (first time: my mom and second time: my husband). I had a seizure while sleeping which woke them up. It terrifies me to think what could have happened if I had been alone. I don't remember anything of either incident until I woke up in the hospital. I still think about these incidents when I go to sleep and it scares me sometimes to go to sleep. These night time battles with hypoglycemia are my number 1 reason for getting a CGM. I think this thing has already saved my life, maybe more than once. :)

Thank you Kerri. Every day I look forward to reading your blog, but today I had to postpone it so that I didn't start crying before going to the gym. As I read your blog, and others, I couldn't help but agree with you about living your life, but crying for the fear and the "we didn't deserve this" moments. I will keep this young woman in my thoughts and prayers along with her family and friends.

Sounds like a lot of us lost sleep last night because of this... It is scary. And heartbreaking. And makes me want even more to pursue a CGM as soon as possible. This could be anyone of us, even those who do everything right, and that scares the hell out of me. Thanks for writing this, Kerri.

I was just telling a friend (mom of a little girl w/type I) how much my heart breaks for children w/type I. I was blessed to come to type I as an adult. Which I know sounds funny (a blessing? but yes, I believe that). I hope God grants those parents of kids w/type I with knowledge, motivation, wisdom, and a very strong listening ability to that still, small voice inside them that tells them when something is wrong. And even then, crappy things can happen. Diabetes---sigh!

Kerri, that was beautifully written.

My heart stops every time I read about this case. I feel so bad for her family and anyone that knew her. The sting of that loss will never ease.

I agree with Bernard, when I read about this I so badly wanted to do something. We need to raise awareness about this 'dead-in-bed" syndrome. It's not fair and we need to do everything we can as a community to just..do something!

I think I speak for every diabetic or caregiver when I say I certainly didn't sleep last night. It's shocking and terrible.

:(

Thank you, Kerri. I was up most of the night and wrote an angry sleep-deprived post today. Your post had a calming effect on me.

Kerri, you have a way of writing exactly what I need to read. Thank you.

This is a tragic event that has shaken our community. You weren't the only one that was lying awake at 3am. I've had diabetes for 20 years and this honestly shook me to my core. I am friends with the beautiful young woman's dad and my soul hurts for the family. I haven't the words to post anything at this moment, but thank you for your beautiful, kind words. They were just what I needed at this moment.

Beautiful, Kerry. You are so right. We are all we've got. Whether we're the person with T1 or it's our spouse or child or loved one... we are in this together. We will cry together. We will fight together.

It scares me so badly to think that no matter how vigilant I am, this could still happen to my daughter. I have that same instinct as you - I want to protect her from everything. But I can't. T1 will make her the person she's supposed to be. My job is to help her along the way. But I still wish I could I shield her. I still wish it was me and not her.

To Laura - You CAN do this! You CAN and You WILL. You are stronger than you know. The first few months of this life are really, really hard. My daughter had just turned 3. Babies. But you will do it for her. You will. And she's still perfect!

Amen Kerri. Thank you for this.

Yes, lets keep the conversation going - since Jesse passed away I know DIB is to blame. The coroner scratched his head and came up with nothing and threw DKA on his death certificate. He had a phone in his pocket, called no one and was slumped over the sink. I blame DIB because I believe it isn't about sleeping, it is about this arrthymia. I feel it, I know it, as his mom. Time to wake up the researchers, Jesse will lead the way.

Thank you Kerri. I was bothered by this awful news all day, just couldn't get it out of my head. The terrifying parts of this horrible disease that stick with you as a parent, or a person with diabetes, and never leave. I hugged my 6 year old a little tighter all day and just couldn't stop thinking about the grief that family must be feeling. I am so angry for everyone who has to deal with this disease. Your words are helpful.

you have such a way with words...thank you Kerri...

I teach at risk students who suffer from depression and and a host of other problems. With your permission I would like to share this with them. It is good therapy for them to hear what others think about and go through.

wow- I have been diabetic for 17 years and have never heard of this, but it makes sense kind of. It doesn't make any sense for the younger people to be experiencing this. I don't know, it just scares me. I would rather die knowing I am dying and be able to say goodbye to my sons and husband. Yikes..

This is a very sad story, Im so sorry for families who have lost a child this way. I am always awake late at night monitoring him, checking on him, because Im scared I will lose him to a night time low or something of that nature. I only sleep about 4 hours a night for this reason.

Kerri, thanks for sharing such a great gift- your writing.
Our hearts is with her parents, family and friends; also, with all the people living with diabetes.
As the parents of two beautiful T1D women (Sysy from, theguirlsguidetodiabetes.com and Ana from, moreartplease.com), our way to combat the fear of the unthinkable has been, to continuously acquire knowledge about diabetes and being increasingly attentive of people's stories (specially our children's)- happy ones and sad ones. Finally, we realized long time ago we have no control over so many things, and for those occasions we completely surrender to hope and faith (still today, our souls cry in silence.)

Thank you Kerri

thank you for sharing this saddest of stories and for your beautiful writing.

I am late getting to this tragic news and like others, I honestly, sadly, but most-selfishly wish it weren't true, because even though I know more than I did ten months ago about diabetes, the fear of something like this happening to Lia is never that far from my thoughts, not ever. But for her sake, we worry so she doesn't have to.

Thank you for your writing.

Thank you Kerri.What a touching tribute.
My prayers are with her family. God Bless all who live with this disease daily.

I read this post while waiting to do bloods at the hospital, as I have clinic in 10 days. A chill ran through me and I have felt panicky since.

So I have just looked up "dead in bed diabetes" and it is all there. The reading of the straight medical facts actually calms my nerves. Knowledge is good. I did know that this syndrome existed I had just pushed it far away!

I have had type 1 diabetes since I was 16 and have three children, 13,11 and 9 who do not have diabetes. I hated being pregnant and found it extremely stressful, but all my babies were born healthy and well, although by c-section.

So my heart goes out to the family of the young girl, it must be so hard for them as parents. They are in my thoughts and prayers.

And selfishly, I hope that in my family the wretched diabetic gene misses a generation, then hopefully a cure will be closer!

Kerri-
Beautiful post & straight from the heart!
HUGS
kelly k

Wow, beautiful post. As hard as it is sometimes to have diabetes, I can't imagine how hard it would be to have a child with it. I always have to think - I'm glad it happened to me and not my child.
Good reminder to appreciate and hold tight to what you have TODAY.

I have never responded to any kind of blog before...just read and internalize what I need and go on....BUT.... this one startled me! My heart is broken for this family, but also for my Ryan. It will however, once my tears have dried, push me forward in continuing to learn all I can about this disease. We are close to our year anniversary date...12/3 and just when I think..."hey we are kind of getting the hang of it....", something pulls me back and it is time to do Diabetes 101 again. I thank you sincerly from my heart for your blogs. They allow me to...read and cry out some of my biggest fears, but also give me hope, resources and faith that a cure will be found for my Ryan and for the countless others who share this journey!

Thank you, Kerri, for again finding the right words when, really, there are none.

Thank you for not going silent. I was afraid to write about this for fear it'd make it "more real."

Just how silly that sounds I do know.

Just what a luxury I have to even decide such a thing I also realize.

Alive. Here. Able. Willing.

Even on my downest of days ("yes, "downest" is not a word but I'm a poet and I can make them up, damn it!), I am blessed and lucky to be here--whether on "borrowed time" or not.

I am here. You are here. We are all here for a reason. For whatever time we have, I, for one, am eternally grateful for the D-OC--and I am glad and forever indebted to SixUntilMe--since it was your blog, back in 2006 (7?), that brought me into the lovely arms of the diabetes online community--a place I now very much feel a part of.

Thank you for what you do, Kerri--but more than that--and most important of all, thank you for being who you are. Thank you for being YOU!

((hugs))
amylia

I have no idea how I received this site info and as mom of a 3 year old diabetic dx since 19 months, the only way I have lived with this crazy disease is by God's Grace of protecting me and my child. And with out HIM, I'd be lost. My son goes from 40-400 in a matter of mins almost daily and I have the CGM which doesnt help much. I still struggle every min, but I give my worries to Christ!

You are a beautiful writer, and mother and wife and person! You are awesome!!!

You are a lovely writeer, mother, wife, and a very lovely person. I have had diabetes for nearly 5 years in 10 day I will have had it for 5 years I got diagnosed with diabetes in 2005 when I was eight years I'm now 13 and I used to wish it would just go away but now I just say what would my life be like without diabetes and how would I be able to change what was going on in my life but I dream of what my life would be like without diabetes and it isn't very good I seem to get sick a lot and get hurt a lot too, I mean I get sick and hurt a lot now but I get a lot more sick and hurt than when I do have diabetes and than I thank GOD for giving me diabetes.

Why do you always have to make me cry. I've been behind in email the last few months and just caught this via your New Years Eve post. My daughter just turned eight on January 1. She was diagnosed at 6 1/2. A friend told me to read your blog where I cried nearly as much as I had during her hospital stay when I read your poem explaining where your blog title comes from (I'm sure the fact that you were both six made that a little more emotional). There have been many nights when I'm tucking my daughter in and she asks, "What if I don't wake up in the morning?" It sucks and it makes me want to punch every single person in the face that says, "Oh, at least you can control diabetes."

Keri,
Great post!
We all do have times when we think about the inevitable parting from this world. Sometimes it saddens me when I think about it, and sometimes I am filled with great anticipation and joy! My faith is a foundation upon which I live my life and the Lord will someday bring me home.
But until then, just keep doing the next right thing, live life one day at a time and find joy in everything! Take care, Phil

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