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MedHelp Member's Question

looking 4 where parents get together to talk after they lost child 2 diabetes

by wolfenastar, Sep 06, 2005 12:00AM
Does anyone know where there might be a forum or chatroom for parents who have lost thier child to diabetes. My daughter

dies last monday, she'd had biabetes since she was 5. I'm just looking for others like me. Any help would be appreciated.

thanks.
Doctor's Answer

by JDRF-Team-SS, Sep 07, 2005 12:00AM
Hello wolfenastar,



I am SO VERY SORRY for the loss of your daughter.  My heart goes out to you.  I am a mother of a diabetic child and cannot imagine what you are going through.



Starsnrose knows what she is talking about since she has been there.  I hope the two of you can connect and be support for each other.



Also, you might want to try this link:



http://www.jdrf.org/index.cfm?page_id=103451

Again, my heart goes out to you and I am truly sorry...



SS

Member Comments (18)

by Starsnrose, Sep 07, 2005 12:00AM
I am so terriby sorry for your loss.  I know this is an especially difficult time for you and your family.  I remember how I felt when I searched for an organization or group that I could communicate with after the loss of my son two years ago to type 1 diabetes.  He too was very young when diagnoised, one year old, and we fought the battle for years to overcome the effects of diabetes.  Two years ago I too came to JDRF and there were people who responded to my need to talk about my son and how I felt about the sense of loss in my life.  I hope you will allow JDRF to reach out to you as they have for me.  Right now, there isn't a forum setup just for bereaved parents who have lost their children (no matter their age), but I want to 'talk' to you.  I would love for you to tell me about your child.  What was her favorite thing to do?  How old was she when you lost her this week?  What was your favorite memory of her?  I have found that I just wanted to make sure my son wasn't forgotten.  I wanted others to know about him and I found that sharing the least piece of information about his life was very important to me.  I hope you will write me back and share with me how you are doing today.  I know you hurt.  I still hurt too, but I would like to be there for you.

by wolfenastar, Sep 07, 2005 12:00AM
To: Starsnrose
firstly, thanks for responding.

My daughter was/is 13 yrs old. She was type 1 diabetic since she was 5 yrs old. She loved to do so many things, a typical teen. She had moved in with her dad late last year, so it has been difficult to keep up with her. She loved to go swimming, read and write peotry, draw, spend time with her friends and her kittens, she loved to shop, talk on the phone, use her computer. She was about to enter 8th grade, which she loved school and did very well.

I think my biggest memory with her was when i would pick her up for the weekend on sat. we would go out and run errands and she would just go on and on, talking about all sorts of things. I would tease her that she didn't know how to not talk, but it never bothered her she would just go right back to running that mouth. When i had enough i would reach over a tickle her to destract her. But we also had some serious conversations in the car as well. We spoke about her diabetes, boys, and other important things. I truly miss her.

Her funeral was friday, and i couldn't believe how many kids were there. They put lots of flowers and little stuffed animals with her. She was/is loved by many.

Thanks for an ear, it does help. How old was your son? The hurt never really goes away does it? I keep pushing myself to do normal everyday things, i do it for her. But i've done that her whole life, everything i've done i've done for her. But that's just being a mom.

Well thanks for being here.

by JDRF-Team-SS, Sep 07, 2005 12:00AM
To: wolfenastar
Hello again,



I am going to find out if we can put you and Starsnrose in touch with each other in a way where neither of you have to post your email address here.



I will find out and get back to you.



SS

by Starsnrose, Sep 07, 2005 12:00AM
Ah, she sounds lovely and so like the typical teen.  I know you miss not being able to talk to her.  I still miss talking to my mom in that same way.  I lost her to cancer almost five years ago.  



Going on is tough, but we all have to make decisions about how we will do that, don't we?  Give yourself lots of time.  Everyone handles grief in different ways.  It is a real energy zapper, but that part is normal too so don't expect too much of yourself for awhile.  I have my daughter, son-in-law, and two grandsons to focus on and I feel so blessed to have them. My son was 33 years old when we lost him.  Unfortunately, over the years he chose paths that were not healthy for him and that led to diabetic complications to manifest much quicker.  He died of end stage heart and kidney failure and was completely blind in one eye and nearly so in the other eye.  I loved my son very much and wish I could hug him right now.  He was a very gifted person who loved music, art, and people and loved to laugh.  We used to love to go to movies together and he was thrilled with technology and how to combine it with his love of art and music.  



You are right about the pain never going away.  It does lessen however.  It is one of those things that people do not fully understand unless they experience the pain themselves.  Of course, I would never wish this on any parent and I suspect you would say the same.  I have a poem I carry with me in my paper organizer that addresses this very thing.  I don't know who wrote it, but it goes:



My Mom is a Survivor



My mom is a survivor, or so I've heard it said.

But I hear her crying at night when all others are in bed.

I watch her lay awake at night and go to hold her hand.

She doesn't know I'm with her to help her understand.

But like the sands on the beach that never wash away..

I watch over my surviving mom, who thinks of me each day.

She wears a smile for others...a smile of disguise.

But through Heaven's door I see tears flowing from her eyes.

My mom tries to cope with death to keep my memory alive,

But anyone who knows her knows it is her way to survive.

As I watch over my surviving mom...through Heaven's open door,

I try to tell her that angels protect me forever more.

But I know that doesn't help her or ease the burden she bears.

So if you get a chance, go visit her... And show her that you care, for no matter what she says...no matter what she feels,

my surviving mom has a broken heart that time won't ever heal.



I know your heart is hurting and mine hurts for you.

by JDRF-Team-SS, Sep 07, 2005 12:00AM
To: Starsnrose
That is a beautiful poem.



I am sorry for the loss of your son.

by Annalise, Sep 08, 2005 12:00AM
Wolfenastar and Starsnrose:  As the mother of an eight-year-old Type 1 diabetic, I wept when I read your stories and admire your bravery in the wake of such heart-breaking losses. You both sound like such wonderful mothers, and I can't even begin to imagine how wrenching this must be for you.  Wolfenastar -- had your daughter been suffering a lot of complications?  It's such a scary disease...

by wolfenastar, Sep 08, 2005 12:00AM
To: .
The poem is very touching and hits at the core. Thank you.

My fiance has a duaghter who will be 4 yrs old, they help to keep me going. My duaghter was an only child, she always wanted a sister.

Your son sounds like he was a good person, probably got that from his mom. So sorry he's gone.





Annalise...

She really hadn't had many complications. She had problems getting her sugar levels steady. She was always running 200 or above. She had a condition when her sugar dropped to low, i forget what the doctor called it, but when it dropped really low she had these symptoms much like a stroke. She would totally lose the function of her entire right sight side, throw up and sleep, then when her sugar came up she had massive migrains. But when her sugar went to high she would often start throwing up and sleeping until her sugar came down. She once had a kidney infection and was on a thyroid pill for a while. But that's the only complications she really had. Just high sugar levels.



I had to go to my doctor today and he explained to me that what probably happened was that she entered ketoacidiosis from her high sugars which lead to her brain shutting down. But i take comfort in the fact that she passed in her sleep.

by jdrf team dm, Sep 08, 2005 12:00AM
Dearest wolfenastar,



As a mother who is going through my own fear of losing my son from type 1 due to complications, my heart is breaking for you. I can't imagine your pain, but I am so proud that you have the courage to reach out for help. I can't possibly understand what you are going through and have been happy with the special responses that you have recieved. Starnrose is a wonderful mother and does understand what you are dealing with.



I haven't lost a child, but I have reached out to family and dear friends for support during dark times and can honestly say I wouldn't have made it through it without them. Don't be afraid to cry and have someone hold you or just talk.This is the time that you need to let others take care of you.



I would strongly recommend that you contact our sister outreach program at www.jdrf.org and click onto the left side called Online Diabetes Support Team (ODST). This is a confidential one on one online communication. You would be matched with a volunteer who is going through similar circumstances. You may also want to contact www.childrenwithdiabetes.com. This is also a wonderful site that has chat rooms and great support.



I wish you the very best through this terrible journey and hope that you stay strong and recieve the help and support you so desperately need. You are in all of our thoughts.



Please keep in touch,



dm

by Starsnrose, Sep 09, 2005 12:00AM
Thank you all for your kind words.  It does help to correspond with other parents who do understand.  I know it is difficult for parents of diabetics when they are confronted with their worse nightmare.  I try very hard to be mindful of that fact when I correspond with other parents.  Fear can be powerful and I had to choose long ago to make an effort to overcome my own fears for Kyle.  This, of course, was not a one time effort.  As you well know, it is daily and sometimes hourly.  Fear can rob again and again.  Loss causes us to realize more clearly what is most important.  Hug your babies right now, keep on doing what you know is right, and please don't sweat the small stuff.  It is, after all, called "small" for a reason.

by J J's mom, Sep 12, 2005 12:00AM
Dear dear wolfenastar,



I too wept when I read the recent loss of your precious daughter. I think this impacts us all, and especially as you are having to live through your worst nightmare and ours. I am so, so very sorry and can only pray for you and your family. I think we all wish we could re-run that and bring your daughter back.



I think that a number of us fear for our diabetic children (with good cause), and your tradgedy will have sharpened our focus, on what is important.When my older kids read your post, they started to affirm their appreciation of and to their siblings. I so wish you were not going through this, but I do thank you for sharing.



God bless you, and may your precious daughter rest in peace.



Nicole