Discussion in 'Parents of Children with Type 1' started by Rocky Mountain Mom, Mar 9, 2011.
EXACTLY what Nancy said!!
I just wanted to send you a (((HUG))) and tell you that you WILL find strength and learn to live again. Keep putting one foot in front of the other. Keep reacting to the bg readings. You will get better at figuring out what to change and when. READ!!! READ!!! READ but don't get waterlogged with info-sometimes you have to put the books away and BREATHE. Read about adults with t1. This has helped me tremendously- to see successful, "normal" people with full lives...who also live with type 1 d. I love reading blogs
You all will be OK. Give it time:cwds:
Thank you all for caring so much, and for posting your replies.
I would like to clarify something that I think I failed to address in this situation. The overwhelming fear is the lows that may occur when I am sleeping...the ones I am unable to check...the ones he may be unaware of...the ones I sleep right through....
During the day, I feel very confident I can handle the lows, even the possibility of severe lows, as I am a (retired) paramedic. Yes, it would be difficult, as the emotions do run very high with the emotional involvement I would have! But, I do have the knowledge and training to deal with it. I have dealt with hundreds of unconscious diabetics, as well as a great deal more altered ones, during my years "on the streets."
This fear is the stuff night times are made of...the helplessness I feel when my body needs sleep, and my child needs sleep, and no one is alert, awake, and available to respond.
Last summer, I woke up in the middle of the night and discovered my T-1 DM husband unconscious, with a blood sugar of 14. He did not have his glucagon where it was supposed to be. (I later discovered he had tossed it when it expired, and did not want to spend the money to replace it!) Even as a paramedic, there was nothing I could really do for him, but wait for paramedics to arrive. We were very lucky that I woke up at that time, and that I noticed his condition. It was only about 1 AM. The night was another 5-6 hours for us, and he would not have survived.
So, in addition to the paramedic memories, where there was much experience but little emotional involvement, I also have concrete experience that tells me this CAN happen to someone I love. This CAN happen to someone I may not be able to protect. It's not theory to me. To be perfectly blunt, my fear is that I will wake up, rested, and discover my child dead.
As far as what I do...I keep very careful records, check BG 6 or more times during the day, and twice overnight (at 1 and 4 AM). I talk the situation over with the doc every day. I pray, when I can remember that I am not, ultimately, "in charge of my son's survival." (Spiritually-speaking.) Yes, I am a Christian. Yes, I am a believer. And yes, I am terrified, anyway. Right or wrong, I am terrified, anyway.
I don't know what else I can do, at this point. And...from that perspective...I still say, "I HATE THIS DISEASE!"
Here are some books you may find useful:
Understanding Diabetes (aka The Pink Panther book)
by Dr. Peter Chase of the Barbara Davis Center at the University of Colorado.
Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin
by Gary Scheiner, Barry Goldstein
Sweet Kids: How to Balance Diabetes Control & Good Nutrition with Family Peace
by Betty Page Brackenridge, MS, RD, CDE & Richard R. Rubin, PhD, CDE. Published by the American Diabetes Association, 2002. 250 pages. Softcover.
Type 1 Diabetes: A Guide for Children, Adolescents and Young Adults -- and Their Caregivers
by Ragnar Hanas, M.D. Published by Marlowe & Company, New York,
Finally, in addition to the forums there is a chat room here where you can talk to other parents in "real time".
Hang in there :cwds:
hugs to you rockymountain mom...
rocky mountain mom -
I know the fear to which you refer - it has kept me awake on many nights. Early on I would stay awake crying (and typing).... so that I could be right there in case my fears became realized.
One night, as I sat at the end of my son's bed, in the dark with just the light of the computer, my son sat up, looked at me with glazed eyes and said...'sugah'... it didn't even sound like him. Checking his blood revealed 40. It is why we fear this disease, I understand it. So, we try to do the best with what we have, as we would with any other fear to which we are exposed (i.e. allowing our child to walk to a friend's house, getting on a bike etc.) - we prepare ourselves and our child to remediate the risk.
In our case, the cgm was the tool that helped with all of that. I still have fear - day and night I do think about what if. When my son gets active I have to worry about the plunging blood sugar that he experiences just by doing more than blinking - but that cgm is a beacon of light on a very dark night. So, just as educating your child about bike safety and providing all the equipment to remediate the risk, you take your pro-active approach toward lessening the risk for those seemingly risky times. I would highly recommend a cgm. I still worry, I still check repeatedly throughout the night (I never sleep a full night through, I am up almost hourly and have no control over it) but I have alot of security, once I check that cgm.
I would never, ever want to be without it. I bought an extra one just so that we will never be without it. Although I may sound like an infomercial for a cgm, i can honestly tell you that that is the one thing that has made this path much more navigable for us. I hope something will bring you peace, whether it is a cgm or the confidence that builds as time goes on.
This sounds like something I need to learn more about.
Since you clearly identify as a Christian, I will speak to you as a fellow believer. God doesn't want us to ignore what is set before us, neither does he want us to take it all on our shoulders. You're right, your son's survival is NOT in your hands, but as a mother, you are charged with the very ultimate God given job of safekeeping here on earth. I believe that strongly, that a mother's job does mean to protect and cherish the gift of children. But that doesn't mean you have CONTROL of it. Your husband had a scary low, you woke up. That was what was meant. It wasn't an accident that you woke up. If you had not, something else would have happened to prevent the unthinkable, whether it was natural glucagon or an earthquake! I believe that firmly, that while we are in charge of our daily walk, we are not in charge of our ultimate walk. We need to be mindful of how we live our life, yes.
So, with that in mind, it's time to let go and let God.
Does that mean hide your head in the sand and trust? Nope, because our earthly duties include taking care of our bodies, and this includes the health of those entrusted to us (our children). Arm yourself with knowledge, learn from every single low, teach your child the subtle signs, hopefully he's old enough to feel those lows, keep him in range with as few high highs as possible, because too many highs will skew things (he'll feel low when he's not, for example). Will you always be successful? NO WAY. But you'll do your best because that's what you'll do.
Fear is normal at this stage. But we can't live with fear forever, or we'll live in constant anxiety, which clearly isn't reasonable. These are very very early days for you, give yourself time to grieve, to worry, to feel that fear, but know that this time will pass. You will not ever let go fully of your worry, but parents never do.
Faith takes just a single step. I have a few things posted on my wall that I'll share with you:
it does not mean to be in a place
where there is no noise, trouble
or hard work. it means to be in
the midst of those things and still
be calm in your heart
Faith is taking the first step even when you don't see the whole staircase.
I think MLK wrote that one.
I'm a big believer in footsteps. One at a time. Don't know what to do? Just do the next right thing.
You've got another mom out there saying a prayer for you right now. You are not alone. This WILL get better.
I love you, Nancy...that was the encouragement I needed today. : )
We had a major scare a little while ago...Cass passed out on the bathroom floor, and then again when I was trying to get her into her bedroom. It was awful, but I knew what to do, and we got through it. It sucked, but we got through it, and I think that a large part of it was all the reading I've done here, and it makes me so thankful for this forum.
I'm glad you have your faith, and that there are people here to encourage that faith in your fight with diabetes. You and your family will get through this, and there will always be someone here who can relate to your fears, and help talk you through them.
I'm still curious about the age of the child in question and the time since dx, and too, about how low.
She updated her siggy:
Wife to a wonderful man, Dx/d w/T-1 DM in Dec. 2001
Homeschooling mom to 3 amazing blessings:
14 y/o boy
12 y/o girl
9 y/o boy Dx w/T-1 DM on 2/27/11
But no idea on the low.
I missed that.
Sorry, I missed this...
He was in the 40s, 90 minutes after a large dinner and an appropriate dose (checked and double-checked) of insulin. His doctor immediately changed the carb ratio, in the direction of being very conservative, as this is all over the map right now.
I am very comfortable with his care, and with all the daytime issues. (Or, as comfortable as can be expected.) My specific fear is about the nights...the times I need sleep. I look forward to discussing the CGM with our doctor.
Thank you ALL for your tremendous support. It helps SO much to have a place where I do not have to pretend that all is well. It helps SO much to simply tell the truth, and where I can receive immediate feedback about my not being alone, weird, or wrong for feeling all the feelings that go along with this upheaval and perceived -- and real -- threat. I feel so much better now than when I posted last night. On the other hand, had I not posted about how really felt, I might not feel better. I now have 24 hours more experience, and am taking this one day (or minute) at a time.
Thank you. (I hope to be able to respond to all the PMs, soon, as well! You are AWESOME!)
It sounds like he might have felt his low. That is utterly fantastic. We lived with diabetes for over 10 years before my son felt his lows. Now he feels them when they reach the 40s, but has gotten lower. The panic he feels when very low is horrible to him -- he eats everything he can get his hands on to feel better.
Yes, he felt it! And I agree...that was fantastic!
I see that "panic" when my husband is too low. He tries to stop that feeling ASAP, even if it means 100 carbs, or more. Whatever it takes....
I don't have any good advice, you've gotten plenty of that, but I can imagine how scary it is to have lived with your DH's T1D and now having your child live with it. Your mind is probably in a permanent state of panic. Not trying to be a downer, just saying that I can imagine (or can only imagine) what you're feeling. I feel the same with the having only 1 kid living with it.
But with time, I guess, the fear becomes less in your face and you sorta get on with your days. You have to for sure. Plus you can't live your days always in this panic mode. It's a hard balance to find, and I hope you find it.
There's nothing sure with life, but we have to be able to enjoy every moment of it. Despite the fear.
My heart goes out to you... We too went thru this last month. All of a sudden, Nics glucose started dropping--60's, 50's, 40's. Couple of 30's. Walked into her room on one occasion--she said she was sleepy--she was cold, pale, sweating...BG was 36. I am so grateful she was conscious enough to take juice and snacks. As you did--I also thought it had to be a joke to call it a honeymoon! We are coming out now--running high--going up and up on our insulin now. <<sigh>> That darn pancreas just won't give up a break!!
Hang in there! <<hugs>>
You can only control what you can control. You control the alarm clock, the waking to check, the dosing of the insulin. The rest..you have no control over. That's when the fear creeps in. But it's the fear that allows you to keep waking to the alarm every night. So use it to your advantage. Harness it and control IT. You can't do anything else with it, might as well use it. As we say in the army family, embrace the suck. Once you control it, rather than it controlling you, then your outlook will change. I promise.
Um, that was....AWESOME. So well said.
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