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  Back to Chat Transcripts Making Sense Of Grief And Anger with Jill Weissberg-Benchell

Registered User Moderator   (server) Tue Apr 13 07:50:00 PM EDT 2010
Our chat about Making Sense Of Grief And Anger with Jill Weissberg-Benchell starts in 10 min in the 'Jill W' room.

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 07:50:09 PM EDT 2010
It's 12.40am!

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 07:50:17 PM EDT 2010
ops, 12.50!

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 07:50:35 PM EDT 2010
Hi Chelsea - We're having a conversation tonight about what to do with Grief and Anger after someone dies. You may want to ask your folks if this is an ok chat to participate in. Ok?  Smile 

Registered User Colleen (CALIF) -Derek, 2, dx'd 3-17-08, pumping 6-18-09, CGMS 7-09  (24.161.207.150) Tue Apr 13 07:50:44 PM EDT 2010
Hi Chelsea

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 07:51:12 PM EDT 2010
Aileen - Still early yet! Last time we chatted back and forth, you were on until almost 4!

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 07:51:20 PM EDT 2010
Hi Chelsea

Registered User Colleen (CALIF) -Derek, 2, dx'd 3-17-08, pumping 6-18-09, CGMS 7-09  (24.161.207.150) Tue Apr 13 07:51:21 PM EDT 2010
Aileen, ouch! nice to have you here tho Grin 

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 07:51:37 PM EDT 2010
I know!!!  Grin 

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 07:51:54 PM EDT 2010
thanks Colleen  Grin 

Registered User Colleen (CALIF) -Derek, 2, dx'd 3-17-08, pumping 6-18-09, CGMS 7-09  (24.161.207.150) Tue Apr 13 07:53:23 PM EDT 2010
My little guy is taking a nap, not sure how long I will last on here...

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 07:56:13 PM EDT 2010
No worries. It's fine to pop in and out. When I have conference chats, sometimes I'm here talking to myself, and then all of a sudden there are 15 people.

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 07:56:48 PM EDT 2010
Aileen - Is Marc excited about the UK conference? I'm excited to have him participate as one of the oldest teens!

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 07:57:45 PM EDT 2010
Yes!!! He's over the moon  Grin 

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 07:58:33 PM EDT 2010
Aileen - I read the transcript from the UK chat with Joe the other day. Lots of great questions asked. What is your sense of how people are feeling now? Better, since they are talking about it?

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 07:58:41 PM EDT 2010
do you have your flights booked?

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 07:59:13 PM EDT 2010
I've tracked down Joe in May, he's doing a talk in Scotland

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 07:59:31 PM EDT 2010
Me? For the UK? Oh goodness yes. Months ago. I always book way way early!  LOL 

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:00:03 PM EDT 2010
They have gone quite quiet about it now... but someone on the list heard of another (DKA) death, a girl who worked with her son.

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:00:24 PM EDT 2010
yes lol, you! When to you arrive/depart?

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 08:01:26 PM EDT 2010
Hi Everyone!

Registered User Colleen (CALIF) Mom to Derek, 3, dx'd 3-17-08, pumping 6-18-09, CGMS 7-09  (24.161.207.150) Tue Apr 13 08:01:56 PM EDT 2010
Hello Intissar

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:02:03 PM EDT 2010
Everyone enjoyed the chat with Joe and certainly felt more reassured

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:02:27 PM EDT 2010
Ho Intissar

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:02:47 PM EDT 2010
Hi Intissar  Smile  How was class?
Aileen - I arrive on Thurs so I can jetlag for a day, and then head back to the US on Monday.
Just heard from Jill - she'll be right on!

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:03:00 PM EDT 2010
ops I meant hi!

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:03:08 PM EDT 2010
Hi All. SOrry for the delay. I actually was doing "mommy" things!

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 08:03:28 PM EDT 2010
Just so you know, I left class early for this chat!

Registered User Colleen (CALIF) Mom to Derek, 3, dx'd 3-17-08, pumping 6-18-09, CGMS 7-09  (24.161.207.150) Tue Apr 13 08:03:34 PM EDT 2010
Hello Jill

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:03:45 PM EDT 2010
OK thanks. Goodness Laura.. not much time to recover!

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:03:58 PM EDT 2010
Hi Jill

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:04:02 PM EDT 2010
Hi Jill  Smile  Thanks for hosting the chat tonight! We have people from California to Scotland.  Grin 

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:04:21 PM EDT 2010
Hello. I'm wondering what helped families feel reassured after speaking with Joe?

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:04:30 PM EDT 2010
So, Jill... can I start things off with a question?

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 08:04:53 PM EDT 2010
We understand the mommy thing...

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:05:21 PM EDT 2010
Intissar - I know you do!

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:05:54 PM EDT 2010
Yes, of course, Laura. What is your question?

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:06:29 PM EDT 2010
It's actually a question to you (Jill)... and a question to the participants as well. With social media, we are going to hear about more and more kids/adults dying from DKA or from nighttime hypos. We didn't have the media before, so we weren't constantly bombarded with these stories. Jill, how do we process that information and have it make sense to us... what do we share with our kids/families/CWD friends... what do the rest of you do? I mostly chew on it and don't say much.

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:07:44 PM EDT 2010
Wow - a bunch of questions at the same time! Let me try to answer them one at a time, OK? Let's start with how to make sense of the current media world where each of us and our children are getting bombarded with information.

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:09:01 PM EDT 2010
This follows on to what Laura has just said... for us it was definitely hearing deaths are rare and usual with good management. We heard of so many in a short space of time I think everyone (on our UK list) freaked! Obviously we hear more through cyber space being so small!

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:09:34 PM EDT 2010
I think that with respect to being overwhelmed with information, we need to react to it in the same way we react to other types of media blitzes. For example I'd love hear how parents hadle information about internet predators, or whether Obama is a communist, or whether Kate is going to win Dancing with the Stars... Or even how our kids handle the potential for gossip on face book or my space.

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:11:43 PM EDT 2010
Hmm. Predators - especially if in our city or neighborhood - is similar because it has 'hurt/death' potential. But I don't think those other things hit us to the depth that kids dying from type 1 hit us. That's a punch in the gut, very close to home. I think those are different categories of information?

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 08:12:45 PM EDT 2010
I think what makes this type of information different is the fact that it is about something that is close to our hearts.

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:13:35 PM EDT 2010
You know, I honestly don't think the numbers have gone up at all. In past years, people have sent me articles about 'death from type 1 diabetes' frequently... and I just read it and didn't do anything with it. Now, someone sends the info and the next time I open fb, I see the same article there. All the bad news is shared with everyone. I used to just delete the articles thinking that they wouldn't be helpful (I still think that). Does that make sense?

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:13:40 PM EDT 2010
I think that's it, deaths when a person has Type 1 is too close to home. Diabetes being such a challenge at the best of times, knowing it's not easily controlled perfectly makes it so much harder...

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 08:14:19 PM EDT 2010
And makes it much more difficult to process, in comparison to other news that we may encounter in the media.

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:14:42 PM EDT 2010
There is just no real answer as you can die from highs or lows

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:15:09 PM EDT 2010
Yes, Laura - it has a different level of "gut" and pain. But the basic strategy is the same. How do parents decide how much to tell and what to tell your kids about things in the news? You are correct that the deaths from diabetes are absolutely more terrifying, but I think that its always a good idea to go back to the basics and find a strategy that's comfortable from what has worked before.

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 08:16:35 PM EDT 2010
Laura, hasn't the incidence of type 1 diabetes been increasing? And therefore, perhaps there are more deaths due to nocturnal hypo's?

Registered User Colleen (CALIF) Mom to Derek, 3, dx'd 3-17-08, pumping 6-18-09, CGMS 7-09  (24.161.207.150) Tue Apr 13 08:17:16 PM EDT 2010
I always tried to give info that was age appropriate

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:17:22 PM EDT 2010
Aileen and INtissar have great points. Both that it is impossible to be "perfect" with diabetes, and that there is no real answer. It's not knowing and not having control that I think is so painful. As a parent, I want to protect my child from all of the things in life that are painful or dangerous. Hearing about children dying makes that "job" much more difficult.

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:19:08 PM EDT 2010
Colleen - that's terrific. And it's also important to remember that what is "age appropriate" for one 10 year old may not be "age appropriate" for another 10 year old. I believe that parents are so incredibly wise in knowing what their children can and can not handle.

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:19:51 PM EDT 2010
Yes, all diabetes is on the rise. But our technology to manage diabetes - type 1 diabetes - is so much better than in the past. We have cgms to detect nighttime lows. We have much better insulins. We have alarm clocks so we can get up and check! Kids shouldn't die in the middle of the night - plain and simple - and that leaves me, personally, angry.

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 08:21:31 PM EDT 2010
Laura, you are absolutely right! I am just saying that there may be a statistical reason for the increase that we are hearing about, not to justify it.

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:21:48 PM EDT 2010
Colleen is one of the most persistent bg checkers and pod-changers in the CWD world.  Wink 

Registered User Colleen (CALIF) Mom to Derek, 3, dx'd 3-17-08, pumping 6-18-09, CGMS 7-09  (24.161.207.150) Tue Apr 13 08:22:06 PM EDT 2010
LOL

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:22:15 PM EDT 2010
Your anger is well founded. In part because its wrong for a child to die. It's wrong for anyone to die from diabetes. And also, it's just so painful.

Registered User Melinda Mother of Alex 13,dx'd 07/06/03, GA, Quilt 520  (75.90.37.75) Tue Apr 13 08:22:44 PM EDT 2010
Hello everyone

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:23:07 PM EDT 2010
Hi Melinda!

Registered User Colleen (CALIF) Mom to Derek, 3, dx'd 3-17-08, pumping 6-18-09, CGMS 7-09  (24.161.207.150) Tue Apr 13 08:23:25 PM EDT 2010
Hello Melinda

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 08:23:37 PM EDT 2010
I think what is most difficult for us as parents, is that even with night checks, we still live with the fear. But then I think, just like I insist on my kids wearing helmets, does that guarantee that they will not get hurt riding their bikes?

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:23:37 PM EDT 2010
That's how I feel too. And to be honest it would maybe be easier if we knew exactly why kids die, (not that I am saying we want the details of the recent deaths) I just mean if we knew someone mistakenly massively over-bolused or had not been taking their insulin, or if the pump malfunctioned... we could maybe feel more in control and know what to look out for

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:24:08 PM EDT 2010
You're right, Intissar... and just because the technology is there doesn't necessarily mean that parents can get it. I've heard from a lot of families in the last few weeks who have asked their diabetes teams for help with better technology, and the team has said no (particularly with cgms). That makes me doubly angry. Hmm. I'm spending a lot of time mad.

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:25:40 PM EDT 2010
Aileen - you are so right! IF there was any way that we can have a sense of assurance that these horrible things wont happen to our children, it would be a bit easier to manage. But knowing that sometimes horrible things happen and that there may be no reason, makes it just so much more painful. It kind of reminds us that we can not always protect our children - and the truth is that none of us can always protect our children from everything.

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:25:42 PM EDT 2010
I want Sam's cgm to give him an electric shock if he doesn't wake up when it alarms. AND I want it to send me a text message at the same time.

Registered User Colleen (CALIF) Mom to Derek, 3, dx'd 3-17-08, pumping 6-18-09, CGMS 7-09  (24.161.207.150) Tue Apr 13 08:26:33 PM EDT 2010
That would be nice Laura

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:26:48 PM EDT 2010
AND I want a CGMS that talks to the pump and as it picks up on trends of going low - it suspends the pump immediately!!

Registered User Melinda Mother of Alex 13,dx'd 07/06/03, GA, Quilt 520  (75.90.37.75) Tue Apr 13 08:27:11 PM EDT 2010
How do u tell if anger is related to diabetes care or something else. Since February Alex has done a complete change is personality. From A's & B's in school to C's and D's. Suspended from school 3 times in 3 weeks then expelled for 30 days. He refuses to do what is ask of him and then he shuts down. Also, found out that he has not been taking his insulin at school just goes through the motions. He just seems so angry and will not talk about it.

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:27:13 PM EDT 2010
I want Marc to have cgm's and I want cgm's to improve also!

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:27:28 PM EDT 2010
YES Jill! Can we keep the electric shock feature?  LOL 

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:27:41 PM EDT 2010
But I do have faith/hope that something better is just round the corner

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:27:43 PM EDT 2010
Are other parents feeling mostly angry - or more sad - or more vulnerable?

Registered User Colleen (CALIF) Mom to Derek, 3, dx'd 3-17-08, pumping 6-18-09, CGMS 7-09  (24.161.207.150) Tue Apr 13 08:27:52 PM EDT 2010
I want the alarm on the CGM louder

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:28:05 PM EDT 2010
Laura - I LOVE the electric shock - maybe when they oversleep too??  Razz 

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:28:46 PM EDT 2010
all of these Jill

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:28:55 PM EDT 2010
Melinda - can we chat about your concerns after this session is over?

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:29:22 PM EDT 2010
That's normal. Even if it feels yucky

Registered User Melinda Mother of Alex 13,dx'd 07/06/03, GA, Quilt 520  (75.90.37.75) Tue Apr 13 08:29:31 PM EDT 2010
sure how long is this session I have some homework to do? Rolling Eyes 

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:30:23 PM EDT 2010
Wow, I think all of those. And also, for those of us with older kids... perhaps a bit less in control (because our kids live away from home). Have heard a lot of that from parents of college students. We're big on the electric shock. Grin 

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:31:02 PM EDT 2010
How about this, Melinda - why dont you call me at work? My phone is: 773-880-4818. Leave me days and times that are best for you if I dont answer. I'm happy to talk in person to any parent.

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:31:28 PM EDT 2010
Hey Melinda - This chat? It's from 8-9. Transcript will be posted.
Teenage years are tough! You are absolutely right to ask Jill about the change in behavior. Sending you a mama-to-mama hug.

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:31:54 PM EDT 2010
Yes, Laura. THere is a higher level of worry when our kids are not sleeping in our homes. We have so much less control. And then add to that worrying about drinking or partying, etc

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:32:31 PM EDT 2010
What have parents said to their children?

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:32:48 PM EDT 2010
I always find it really helpful to talk to you, Jill. And to Joe. You have different perspectives and different ways of helping me see the same situation from a different place. Thank you!

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:33:21 PM EDT 2010
I agree electric shock too, sounds very good. The new medtronic pump has a low suspend feature in the UK, but not in the US I believe, it shuts down for 2 hrs and says I have diabetes call 999 on the screen, but I believe the alarm is rubbish anyway so it's unlikely anyone would hear it let alone see the pump

Registered User Colleen (CALIF) Mom to Derek, 3, dx'd 3-17-08, pumping 6-18-09, CGMS 7-09  (24.161.207.150) Tue Apr 13 08:33:24 PM EDT 2010
Derek is three, I didn't say anything  Grin 
Need to go little man is up from nap. Thanks Jill

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:33:36 PM EDT 2010
Intissar - how did you share with your kids? All different ages?

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:34:05 PM EDT 2010
My pleasure. I think it's terrific that CWD has different folks available with different training, different perspectives, etc. That's kind of like life in general, right? There's never just one way to look at things...

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:34:22 PM EDT 2010
bye Colleen

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:34:35 PM EDT 2010
Bye, Colleen - Thanks for stopping by to chat.  Smile 

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 08:34:51 PM EDT 2010
I spoke to each one separately, to make sure that I address their individual concerns.

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:34:51 PM EDT 2010
THanks for joining us, Colleen! Give Derek a kiss!

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:35:06 PM EDT 2010
Aileen - What did you say to Marc?

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:35:38 PM EDT 2010
Intissar - any insight you can share about how you approached this incredibly tough topic with each of your children?

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 08:36:12 PM EDT 2010
And then we spoke about it as a family. I was most worried about Maryam, because I did not want to alarm her. I did not want her to start fearing her diabetes, if that makes sense.

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:36:22 PM EDT 2010
Intissar - Did they each voice concerns? Were they different types of concerns?
Sam was very sad. And then he recommitted to wearing his cgm all the time (something he had started doing a month prior but hadn't told me).

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:36:51 PM EDT 2010
I told Marc, but I think after talking to Joe is was probably something I felt I had to do for me, rather than him... although I felt it would hopefully remind him to keep taking care of himself as things can happen. I did say it was unusual though

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:37:06 PM EDT 2010
Intissar - that's so wonderful!

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:37:42 PM EDT 2010
What was Marc's reaction to your conversation, Aileen?

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 08:38:30 PM EDT 2010
I actually took the opportunity to enforce the "helping" aspect to Maryam's diabetes. The boys usually complain when they have to fetch her purse when she is feeling low.

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:38:43 PM EDT 2010
If Sam recommitted to wearing his CGM, then that's a positive outcome from a tragic event.

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:39:31 PM EDT 2010
He said he was sad, but then seemed to brush it off and told me I was worrying too much. I tried to say it again a few days later and he said he doesn't want to hear about anyone dying now

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 08:39:48 PM EDT 2010
I think the one that was most worried, was Yaseen (10 years). He has been checking on Maryam more often lately.

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:39:59 PM EDT 2010
Intissar - so it sounds like your discussion helped bring the family together and to recognize that diabetes is not a "do it yourself" kind of disease, but that everyone with this disease needs help and support in one way or another.

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:40:10 PM EDT 2010
It is Laura

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:40:22 PM EDT 2010
It is. And I'm glad that he understood my fear and told me that. I needed to hear it. Otherwise I would have had to move in with him.  Eek 

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:41:00 PM EDT 2010
Aileen It sounds like Marc is SO NORMAL! Wink 

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:41:17 PM EDT 2010
Jill, I think a big problem I have (and it's always been like this even before Diabetes) I say too much to Marc as I don't have any other close family and sometimes I just need to talk

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:41:31 PM EDT 2010
lol, thanks Jill  Grin 

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:42:23 PM EDT 2010
I try hard not to say too much as I am aware of what I do, but it's hard

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 08:42:23 PM EDT 2010
I think because I also became hyper-vigilant with Maryam, she told me that I was worrying too much as well.

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:42:37 PM EDT 2010
Yes, Aileen - that is certainly a struggle for so many of us as parents - what do we share about our fears and concerns with our kids and what do we hold back on? Not an easy thing!

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:44:23 PM EDT 2010
As parents, we've probably talked about this a lot more online than our kids... Sam said the same thing to me, Aileen... that we parents are worried more than the kids are.

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:44:40 PM EDT 2010
Sometimes it is helpful to let our children know the obvious - that we do worry (like every second of every day), but that sometimes things happen that ratchet up our worries, and that when that occurs, we may become more annoying than usual. We can ask them to understand and also give them permission to let us know when we've over-stepped the "worry becomes nagging" line. We dont want to nag to the point that they dont communicate with us any longer!

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:44:52 PM EDT 2010
It's times like these I want someone to share my worries and thankfully I do have all my friends at CWD who have made a massive difference to my life. Knowing others feel as I do really helps

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:45:25 PM EDT 2010
And when you are up in the middle of the night, you can talk to your US friends!  LOL 

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:45:36 PM EDT 2010
don't all teens say me "nag"

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:45:48 PM EDT 2010
 LOL  Yes!

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 08:46:04 PM EDT 2010
Jill, I so agree with you!

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:46:25 PM EDT 2010
That is a really excellent point!

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:48:12 PM EDT 2010
I really think that sometimes our children do not hear our worries or concerns. Instead, they hear something completely different than we intend, and almost interpret our concerns as giving them the message that we dont trust them or we dont think they can make competent choices. FIguring out how to express worry and concern in a way our kids can hear it is quite a challenge!

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:48:26 PM EDT 2010
I am finding I can be so tired during the day but struggle to sleep at night... nights are just more of a worry at the moment, but I am sure with time I can get back to my "normal"

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:48:45 PM EDT 2010
Jill, can you talk a little bit about channeling your anger into positive action? That's something that you and I discussed just a little bit, and the thought has been munching away in my mind.

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:50:31 PM EDT 2010
Laura - that's a big topic. May I recommend that this can be the topic for the next chat?

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:50:41 PM EDT 2010
Aileen - Why trouble sleeping? Worrying? Or just up?

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:51:33 PM EDT 2010
Aileen - it's so normal to find that when the kids are asleep and the house is quiet, and your settling down to bed that it is during that time that our brains begin to send all of those worried thoughts our way! Not very convenient, is it?

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:52:25 PM EDT 2010
I just feel more alert at night... I think more worried than usual but I think it's natural under the circumstances

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:52:53 PM EDT 2010
Good idea. Will you lead us on a discussion about that? I am guessing that people have a lot of ideas for things that they can do to make a difference. And taking action helps move the angry energy to a different place... at least for me it does.

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:53:07 PM EDT 2010
No! I would be good to be able to switch off a switch and go to sleep when I should!

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:53:10 PM EDT 2010
I'd be delighted!

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:53:46 PM EDT 2010
I manage anger better than sadness I think

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:54:01 PM EDT 2010
Great Jill  Grin 

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:54:27 PM EDT 2010
Me too, Aileen! I can use the energy from Anger to do something. Sadness saps my energy.

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:54:41 PM EDT 2010
That's a good point, aileen. Anger/sadness - two different things.  Frown 

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:55:07 PM EDT 2010
So I am normal too!  Grin 

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:55:38 PM EDT 2010
Hey Aileen - when would be a good chat time so we can involve the UK families, too? Would you send me a note privately? Would be nice to have an international discussion about this! We're all one family on different sides of the Pond. Smile 

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:56:19 PM EDT 2010
Yes! Stone Cold Normal Grin 

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:56:23 PM EDT 2010
That would be great Laura, thanks. I'll email you tomorrow

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:57:05 PM EDT 2010
Jill - Do you have any final thoughts for the chat this evening? We're coming to the close of the formal chat hour.

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:57:20 PM EDT 2010
It would need to be earlier than this as we are 5 hours behind

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:58:55 PM EDT 2010
I will remember those words Jill Yes! 'Stone Cold Normal' - that coming from a psychologist has made my day!!!  Grin 

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 08:59:30 PM EDT 2010
Ok - we'll discuss.
Aileen - go to bed. It's 2 a.m.

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 08:59:32 PM EDT 2010
I think that it's just so hard to come to terms with something that is fundamentally so completely wrong and that should not happen. It shakes up our sense of safety and security and challenges our sense of fairness. It's so wonderful to have chats like this to be able to just wrap our heads around this.

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 08:59:44 PM EDT 2010
Thanks Jill and Laura. I really appreciate you both doing this

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 09:00:28 PM EDT 2010
I am glad I left class early to be able to chat will all of you. Thanks!

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 09:00:41 PM EDT 2010
Any time. Invite me to Scotland !  Razz 

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 09:01:48 PM EDT 2010
Jill, thank you so much for leading our discussion - to be continued. In scotland?

Everyone, thanks for chatting... this room will stay open for another hour for anyone who wishes to stay and visit.
G'night!  Smile 

Registered User Aileen (Scotland) Mum to Marc, 17 years old  (86.170.180.202) Tue Apr 13 09:01:52 PM EDT 2010
OK, will be in touch. Everyone should come to Scotland, you are all very welcome anytime. Good night everyone & thanks again Grin 

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 09:02:28 PM EDT 2010
Intissar, thanks for your insights, too. I always find them really helpful.

Registered User Jill Benchell Pediatric Psychologist  (68.74.69.239) Tue Apr 13 09:02:38 PM EDT 2010
Thanks everyone, for allowing me to be a part of your CWD family!

Registered User Intissar Mother to Maryam, Zak, Abdalla and Yaseen  (98.114.34.185) Tue Apr 13 09:03:56 PM EDT 2010
You are most welcome Laura! Good night everyone.

Registered User Melinda Mother of Alex 13,dx'd 07/06/03, GA, Quilt 520  (75.90.37.75) Tue Apr 13 09:06:14 PM EDT 2010
Jill are u still online

Registered User Laura Billetdeaux CWD Moderator, Sam's mom, dx'd 8/98  (76.226.222.12) Tue Apr 13 09:08:28 PM EDT 2010
Melinda - Did you get Jill's contact info?

Registered User Moderator   (server) Tue Apr 13 10:25:00 PM EDT 2010
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