I think it was Meri's post at Our Diabetic Life that lead me to this post. This is the stuff that I don't usually share with anyone, not even my husband. I don't let it seep too far into my perky consciousness during the day. But at night, when my positive-energy falters, when my "perky"-self slumbers, when my annoyingly, at times, "glasses colored rose" are darkened by the sun-less sky... my mind goes to places that I don't usually allow it to go when my defenses are up.Thoughts that fleet through my brain when approaching my sleeping son during the night:
- "Oh thank god...his chest is rising and falling with inhalation and exhalation"
- "Good... he just twitched his nose a bit"
- "Phew... he moved his leg"
- "Dear lord ... why isn't he moving...oh good he feels warm"
- "Please, please, please ... don't let this be the beginning of the nightmare I have feared"
Thoughts that flood my mind if I wake in the early...the pre-dawn part of the day, BUT I wasn't planning on checking my son's blood sugar:
- "I'll never forgive myself if I don't get up and check his blood sugar and something is wrong. Never!"
- "What if .... What if ... What if ...!"
- "Get up! I don't care how tired you are...YOU must check on Joe!"
- "Drag your butt out of bed and check on your son... You have to!!!"
These are the thoughts that enter my mind almost nightly. It isn't that I live in fear 24/7. I feel I have a good and "healthy" grasp on type 1 in our lives; but I know the price. I know the price that "D" can demand of us to pay. The price that is too high to pay. It is a RARE price. A rare price that I refuse to pay with my beautiful son as the currency.
Nighttime hypoglycemia (low blood sugar) is a type 1 parent's worst fear. The body produces two hormones, Epinephrine and Glucagon, to combat low blood sugars. At night, Glucagon production usually declines. In addition, people with type 1 diabetes have impaired Glucagon production, which becomes even more depressed with each low blood sugar endured. Other contributors to nighttime lows is the prolonged period between meals and the body is more sensitive to insulin (unless Growth Hormone is involved). It has not been "proven" to be the cause of what we all think of every night as we kiss our dear children and tuck them in for the night. But I know AND you know we are all thinking about "Dead in Bed Syndrome". The children with DIABETES website defines it as: "Someone with Type 1 Diabetes is found dead in the morning in an undisturbed bed after having been observed in apparently good health the day before. No cause of death can be established. " It has been thought to be due to a cardiac dysrhythmia perhaps in response to a low. Who knows? Who cares? Although I know it is an extremely rare syndrome, it scares the shit out of me. "It"..."D"...and "it's" treatment..."it's" management threatens my son's wellbeing, my son's life...daily....and nightly.
The reality of my nights living a day-in-the-life parenting Joe.
10/21/2010 A well written article about Dead in Bed Syndrome
37 comments:
Gosh... those thoughts sound familiar :) and I hate it when that "voice" won't just let me go back to sleep. Stupid Voice!
BTW~ I hate that definition!
You sum it up exactly hon. I am scared of the beast at times too.
I think pretty much the same thoughts every night. They have diminished a little since we got Dexie, but they are still there.
I slept on my daughters floor for so long waking her every 2 hours...I finally stopped after a year and a half...after reading your post I may start again...the post scared me. Its hard to think about.
Same here everynight. My worst time is, as you mentioned, pre dawn hours.
Oh, Reyna.
Obviously, I don't have a D kiddo. I do, though, after years spent in the PICU, do the night rounds. I spent years shaking when I would go to get a small one from a crib, sure they would be cold and rigid. I stand and wait for a twitch, a chest rise, an exhalation, and only then can I exhale, too. Once when Em was 18mos old I found him seizing and apneic in his crib, totally blue. I actually turned for O2 and suction and only then realized I needed to call 911. He was fine, thank christ, "only" a febrile seizure...I nearly slapped the ER doc that said that.
So I do my rounds.
I however, have the luxury of assuring myself that I am being silly. No risk factors, really etc. And I often think of your night rounds. Then I send a thought and prayer to you and Joe, for safety and grace and for Joe to grow and thrive like any child so lovingly tended should.
xo
You just pretty much decribed my nights... Many times, I have woken up from a deep sleep and the first thought is, "you NEED to go check Elise". I try to argue with myself that she's fine, but then I think, "if something happens, you will NEVER forgive yourself."
More often than not, I find a low BG staring back at me in these situations.
Hate "the voice", but I am oh-so-thankful for it.
You are so not alone with those thoughts! I have them too.... more often that I like or want to admit! LOL :) I'm also known to put my hand on Tristan's chest to make sure that he still breathing!
I feel this way every night. Even though our endo has said "you dont have to", I have basically told her fuck off and continue and will continue to check Justice everynight. We check before bed, midnight, 3am, and 630. Sometimes way more depending on what his sugars are at those times. I am always tired but I refused to do it any other way.
I feel this is why it should be the right of all diabetics to have a CGM, they can save a life. A normal sugar isnt always gonna stay there.
Ok I have yapped enough on here, Big hug lady!
Yep, you and I, we are inside each others head at night my friend. I hate this blasted disease and I hate that although we can put on those "glasses colored rose" during the day. (I'm a pro) That the night eats away at our soul.
That is exactly why I told my neighbor yesterday that the fear of SIDS was just the beginning of restless nights for me with Isaac. She is a type 1 and knows all too well the effects of severe hypoglycemia.
All of your thoughts have been mine, and I have even woken Isaac up a few times just to make sure he was okay...pretty awful, huh?!
Damn straight.
I've taken many a pulse, even if warm.
I've also thought, "Oh good, his toe is bleeding." After I lance it. For some reason I expect that dead people don't bleed.
These are morbid thoughts, yet we think them daily, no differently than we think, "what the heck am I going to make for dinner tonight.
Sounds all too familiar Reyna. I hate knowing that our best may not ever be enough. I know it is rare, but statistically T shouldn't even have this disease. Since diagnosis I feel like , "If he can get this, anything can happen." At least we know there are thousands of other people who have the same thoughts.
I swear, all of us d-moms are sharing brainwaves! That's exactly how my night goes as well. The worst is when you wake up at 5 in the morning and know that going in to test them now just might mean they wake up for the day, but you can't stop yourself because of the "what ifs"! Scary stuff! We still keep a baby monitor in Lily's bedroom just for that purpose. When she goes low in the night, we'll hear her say "mommy" just once in her sleep and I know that it's time to grab the juice. Funny how we can become programmed to wake up with just that one little word!
Reyna, I love reading your blog. It makes me feel like I'm not a freak. Well...unless you are, too. Then we're both in trouble. : )
Here's my question though. You said these are thoughts that you don't really share with your husband. Neither do I. What role does your hubby play in Joe's diabetes? Just curious....
You said it all...the worst for me is when Emma sleeps in later than normal. I peek at her every two minutes hoping she'll move.
Can I just say I LOVE YOU ALL!!!! You have no idea how good it feels to come home from a long day of work and to find so much love and support. Humbling. Thank you.
At Tracy1918 - My husband does the night checks on the w/e and he does some of the care...but I do the bulk of it as I only work part time and my husband is the "bread winner" for the family. I guess I just don't talk about it much b/c I don't want to hear myself say the things that I wrote here. I don't know if that makes any sense or not.
So not to be a complete arse, but there have been many times where I have gotten up to test and Kelsey is fine. And then just an hour later she has woken her self up because of a low. You know all the stories you hear about all the banging around in the kitchen...yeah that's true. Slamming cabinets and stuff her trying to find something to eat. All you can do is be diligent. That's all you can do. What I have learned is to keep the emergency "supplies" in one spot. So when they do hit a low their subconscious knows where to go. (I am pretty sure I just destroyed the spelling of subconscious)
Reyna, you need to share your fears. I bet your husband shares them. If you talk about them then you are able to work out game plans. Game plans are good. Also talking makes you feel that not "everything" is left up to you. It might very well be, but usually talking about it makes you feel better. I am happy to hear your hubby picks up the late nights on the weekends.
Just know we are all there with you.
:( This is the stuff that the world doesn't know. This is our little secret, that if it was out...if the whole world knew this story...if the whole world felt for one minute the way we do seconds before the nighttime check...well, let's just say there would be a cure. Because the world wouldn't stand for it. But alas, the world will never know, unless of course they have their own child diagnosed. And any D parent will tell you, they wouldn't wish it on any family.
I love reading your blog! Your posts are always so real and usually excatly what I am feeling and not sure how to word. I send several of your posts on to friends and family so they can see what we are dealing with. THANK YOU FOR your posts and know that we are there with the fears too!
I am crying reading this post and the comments because I go through this every night. Occasionally I will hit the snooze on a middle-of-the-night check and then when I wake up I am in a complete panic-- what IF?? It's a horrible feeling, waiting and watching for your child to breath so that you can then make them bleed.
You read my mind. You are really good at that, you know?! :-)
I have these same thoughts, every.single.day. I just hope and pray my baby wakes up alive. And in the meantime, I/we check many times, every night. I could never forgive myself if I didn't!
I don't breathe until I see him breathe.
I dont know, I am not sure that I will ever truly understand what this is like... I can imagine I suppose... But I will do what you do. I will keep on loving you and be the best friend/support I can be and hope and pray that you or me do not have to pay ANY price. Much love, N
Oh Reyna! I am right there with you. I have to force myself out of bed at times but then the voice says "you will never forgive yourself!" We just had our endo visit this week and she asked me why I'm checking Ally at midnight? She said "Is she eating at midnight?" I actually was speechless!
Reyna I have the same exact thoughts word for word. I even sleep with her at times so I worry less I'll miss a low in the middle of the night. She typically becomes restless and moans a little. I tell myself I'm being too paranoid...thanks for sharing, for "verbalizing" your thoughts. Once again, I feel less like a freak and more like a "normal" D parent :) Cheree
Reyna....this is why my little Olivia hasn't sleep in her own bedroom in over three years. We check her through the night too...to us, there is no other way! I'm too afraid that I will not be able to hear her at night. Her bedroom is upstairs and our bedroom is downstairs. She sleeps with my husband and I every night. It is the reason why we are selling our house.
My thoughts and actions exactly! Nights are when I worry the most. And I'm always relieved when I see Jack or hear him wake up in the morning, cheery, energetic and full of life. :)
And this is why my 3.5 year old is still sleeping in my bed!!! A fact I don't openly share much with ANYONE. This summer has been especially bad for sleep for me with usually checks at 1, 3 and 6. This was a great post..
This was so well written - thank you for posting it. I just posted on FB.
It's a shitty club we are in but I am so glad to be in it with you.
Yup. And Jen - I'd sleep with her if I could. It's so much easier. And for some reason I feel safer that way. I know the voice. The one that tells me to get my lazy, tired ass out of bed and check that girl. That is what makes me hate d.
I feel the exact same way, and what I don't understand is why the docs don't seem to understand this. My endo told me that there is no reason for me to wake up and check him during the night. That "none" of her patients do that according to their surveys. I told her that's hard to believe because EVERYONE online checks their kids every night. We're ALL terrified of our kids having lows during the night. She said, "Who's EVERYONE?" All I could says was, "EVERYONE!" Not only am I scared every time I check him that I'll find him not responsive, but then I beat myself up every time I don't hear my alarm or somehow don't wake up. I wake up in a panic and run to check him, and then am so angry at myself about missing my alarm. If something ever happens, I'll never be able to forgive myself. I just know it. How can we stand together and let people know what we're going through and somehow get some help? We have to get better monitors/alarms, something that will help us not have to have this constant nightly stress. It can't possibly be good for us.
Wendy
Yes. I am right there with you and every other commenter here. It’s a relief to see I’m not the only one muttering “Oh please let it be a good number. Please let it be a good number” when I’m performing a nighttime check. Or looking for signs of life when I enter my daughter’s room. Or breathing a sigh of relief when my child stirs in bed. Or breathing that same sigh of relief when I hear little feet hit the floor and make their way into my bedroom in the morning. How tragic that this is what has become our new “normal". As every day as making the morning coffee.
I agree with Meri that if the world really knew the deepest darkest fears of the parents of children with type 1 diabetes, there would be a cure by now.
Thanks for introducing yourself to me and directing me to your amazing blog. I look forward to following along. So nice to meet you, Reyna!
I don't have kids, so I don't know exactly what that's like for you, but I'd say almost every night as I lie in bed trying to go to sleep, I think about how I could go to sleep and not wake up. Mostly, I'm scared that a heart attack will get me since I'm 30+ years into D, but having had several severe hypos requiring my husband to give me glucagon over the last two years, I fear that could be the death of me too. I try to remind myself that it's rare, and I try to remind myself that so far, my husband has woken up and taken care of me, because what else can I tell myself if I plan to sleep at night?
Wow, this and the comments were intense to read. I've always felt like I'm morbid about my son's diabetes. I feel awful that I check for life before checking his blood at night. I've never even told anyone I do it thinking of bizarre it would sound to others. Once again, comforting to get to interact with others going through the exact same stuff.
thanks for posting <3
Reyna,
I've just started reading your posts to get an idea of what you're going through so pardon me if this sounds ignorant and something you already do/use. We had a high SIDS-type situation with our first child and we spared no expense and got the Angelcare motion-sensing monitor. I don't know (and I didn't see it in the reference links) what the recourse is if one is able to attend to the child moments after they become motionless. Can they be saved? It seems like a rare syndrome and sounds like a lot of folks posting HAVE to do a lot of the things normal first parents do and this product gave us a LOT of peace of mind...mainly because it proved to work so well.
-Justin (ya....we swam together at NJ! :)
Reyna, I guess we ALL have the same thoughts and fears! I always look for the chest rising and panic if I have slept through by accident! And yes the what if's!!! There are so many of them! I wake at 5am...not wanting to prick and wake her but WHAT IF??? I too don't let my mind go these places often but every night somehow in my private thoughts they are there. Wish I didn't find comfort in knowing others had these thoughts too! You are all amazing parents!!! Love ya Reyna! MB
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