How do we cope with this

It's so hard. For me, my faith helps. I accept that there is so much in this world that is uncontrollable-includind diabetes. I trust that each day we are doing all we can to keep him healthy and alive, and I leave the rest up to God. I thought for sure last night I would be up checking Sam out of fear, but I wasn't. I said a prayer when I went to bed, peeked in on him once, reviewed the day in my head, and felt all was well. I've had to make myself realize that ANYTHING could happen to either of my children that is beyond my control. IDK if that makes sense.

 

I think Jessica's comment about relating it to SIDs is a good point. One can do everything right and still have a baby die from SIDs. And one can do everything right and have a child die from D. I think all we can do is to follow the latest research and do what we feel is best for our kids. With babies, in my childcare, they sleep on their back with a sleeper on but no blankets, no pillow, no bumper pads.....we don't smoke, etc. I do what I can do to prevent SIDs and hope for the best. With D, Alex is 20 now and it's mostly out of my hands. I hope that I've taught him well. And I provide him with whatever he needs or wants for his D care (ie cgms). And I let him know that I am here to help. And I hope for the best.

It's the same with so many other things....teens driving....kids swiming...we try to make it as safe as we can.

 

You can't let fear paralize you.

Dead in bed syndrome is very rare.

http://onlinelibrary.wiley.com/doi/10.1111/j.1399-5448.2008.00404.x/abstract

you do what you can to protect them

like for me, I've started my dd back in diabetes training wiht our local diabetes educator. she's really good with kids. she has allready identified some things dd was doing to slack off on D. like she noticed dd was just guestimating the correction, wasn't using pump for correction.

I'm also starting therapy for her. just need to find therapist
we have a shortage of mental health providers here. Being 14 sucks enough allready, but add D in and it really can suck

 

This was a horrible tragedy. If people become more vigilant because of it then some good has come of it. But you can't let the fear paralyze you. If you have, let's say, lung disease in your family, you can't walk around all the time worrying about getting lung cancer. You do what you can to minimize the risk, don't smoke, eat right, exercise, etc. But you can't let the fear rule your life.

Personally, I check my daughter multiple times at night so I can correct highs and treat lows. Yes, I don't sleep much. Yes, I am tired all the time. But I don't mind because I know I am doing the best I can to manage her diabetes. That is all we can do. At some point you have to accept that things might happen that are out of your control. It is scary but it is something we all have to deal with, diabetes or no diabetes.

 

Yesterday the first thing I did when I log into my computer in the morning was to check CWD Forum, and when I read the news it broke my heart and I told my wife and she was devastated also, she ask me, When does it end? Will it ever end? She was talking about the worries, the fears. You can never be too careful with this disease.
I check my daughter every night at 12am and then at 3am, and sometimes depending on her previous bg at 5am, because I know she can drop fast and some nights she just stays in the same range the whole night, but I don't trust a two night pattern, not even a whole week pattern. I will keep checking my daughter at 3am no matter what her bg is at 12am. D is not to be trusted and it never rest. Maybe its because we are so new to this that we are more alert, but something tells me that I will keep checking until she leaves home. I can't leave my daughter's life in the hands of "God" if I sit round waiting for him to lower her bg or increasing it, she will die.

 

This is exactly how I feel. I am so heartbroken and tear-filled about this because we work so hard to keep our children safe. Ultimately, though, things happen outside of our control all the time. If I didn't have faith in God and my belief that He has a plan for each of my children (that may be different than my own plan), I would go mad.

((huge hugs)) to each of us dealing with this today. And ((HUGE HUGS!!!)) to Eilish's family who are living out our nightmare. I pray that somehow God can give to us some fraction of peace and hope today. We need that sliver back!

 

Thanks all for your input. I am not religious tho I am glad you can find comfort in your beliefs. I know this is no different than any other it could happen to you type things except its directly related to her D. It just makes me anger this is the way it is because she has D there is one more thing out there that could get her. This is more likely to happen to our D kids and well not our non-D kids. Tho with my non-D kids I have my own set of worries for them. I wish I could change it all for all our kids.

 

I would like to point out that in Europe and Japan (where they have data) overall death rates for people with type 1 diabetes under age 18 are no more than twice the death rates for people under 18 overall.

Since the risk of dying under age 18 is pretty low, doubling it is still a pretty low risk.

 

I am feeling the same as all of you! I tossed and turned all night! Its a wake up call....I think I was starting to feel comfortable with Chloe at night....Now I think I will be starting the whole 12, 3,6 checks again...For awhile anyways...

Praying for the family and all of us here a CWD!!!!!

 

That's how I feel right now. Thank God I have my "CWD Family" here, because my friends aren't getting it. They think I'm over vigilant as it is, and they said, what else can you do? My thought is I don't know, but for now, this is all I can do, be vigilant.

I told our nurses at school about this and they too are floored. They want answers, they are asking why? too.

I wish I did have an answer.

 

Laid awake last night too....this is just too much, where is a damned cure already??? What was the last disease that was really cured? Polio? It is about time for another...

I can't believe this child is gone. I didn't know anything about the dead in bed syndrome. I am heartbroken for this family.

 

Sounds like a lot of us were up testing last night.

I did 8pm, 10 pm, 1 am, 3 am, 5:30 am and finally got her up at 7:30 am. Just wanted to make sure those overnight basals were where I wanted them. I'm still tweaking.

I deal with it by grieving for the family, coming here for support, holding my daughter close, and continuing on with my life. I can't do more than I am. I know that and I take comfort in that.

 

Disclaimer: I know many people are not religious. I'm sharing this for those that are Christian. That's the only perspective I have on this, the only one I know. And the only one that helps me go on in life, no matter what is thrown at me. So I"m not posting it to shove religion at anyone, just to say how I cope and to perhaps help anyone looking for an answer which is of a religious nature:cwds:

For me - I can only make sense of this when I remember that all suffering ties us to Jesus. Mother Angelica once said "Suffering in itself does not make us holy. It is only when we unite it, out of love, to the suffering of Christ that it has meaning. Suffering without love is wasted pain." And she added this reminder:
"All the misery of the world, past, present and future, could never compare with the sufferings of Jesus. Whatever you are going through, He's been there first, and He did it out of love."

and then I remind myself that Mary the Blessed Virgin, the woman chosen to be the mother of our Lord watched her son suffer and die. Who am I to think that I deserve a better life than that?

 

I did not test repeatedly last night, but I slept in her room, so that I could be very close to the CGMSs. Still I tested at 2 and 4, even the the CGM was very steady. Like Chris, I don't get much sleep either -- more so with the CGM -- but not enough to feel rested.

 

Jonah, I keep telling myself this...Only 20 - 60 a year of all Type 1's...that isn't alot. But then, it IS alot - it is to many.

My child is already the victim of a statistic. I no longer take solace in the 1 in whatever chance theory.

 

I realize that it's not for everyone, but I just wanted to say...that speaks to my heart, personally. Thank you for posting this, Michelle.

 

I doubt that I can do any better than the family of Eilish did, but I can do better than I am doing. That's a fact. I will do more. I can do more. Not everyone can do more. Some are doing all they can do now. But I really can do more. I can set alarms that I will not sleep through. I can get my wife to check more. I can find a solution to Jacob's tape allergy so he can have the CGM 24/7. I can analyze the data more. It's scary to think that sometimes the best you can do is still not enough, but that doesn't change the fact that I can do better. And I will.

That will help me to cope. Somewhat.

 

As harsh as it may sound, I think we (general we) will be extra extra vigilant for a while, then revert to that comfortable place where we try not to think about the what-ifs. I think that is very normal and a coping mechanism.

But for now I just wish i could hug Mel, Charlie & Ella and tell them I'm here for them and cry with them.

The impact this has had is overwhelming. Goes to show you how deeply we all care for one another and how much we all wish we could take their pain away.

I think, personally, I need to speak to the D team psychologist because part of me knows I cannot function testing overnight every night. I've done that in the past and I suffered because of it. Selfish, I know. Very selfish, but if my health suffers I cannot take care of my kid. On the other hand, the fear is so greater now.

And yet, the unpredictability is always there. Always.

 

When William was first dx'd I read about this possibility and I know I came as close as I get to a "panic attack" over this one night (on the chat - back before forums). It is such a scary and heartbreaking scenario.

The cgms has certainly given me some peace of mind when it comes to worrying about overnight lows. I hope that technology continues to get cheap enough, easier to use and more accurate.

 

This is exactly where I am. I know that I do a damn good job but there is room for improvement in some that I do. And in getting my husband to help more with nights checks when he is not out to sea.