OKAY, Now I am Asking YOU…..What Does CWD Mean to You?

unhappy smileI received a message from someone who may have misunderstood what I wrote this morning about CWD.  But it made a question jump into my head and I look to you for an actual answer.  If something that we take for granted ever became unavailable, perhaps we can learn together just how much something means to us by considering the opposite.

I am not speaking about anything underlying here and it is an absolute hypothetical—-so let’s be clear about that way up front.  I do not want anything read into this at all!!!!! OKAY?  Okay.

Please do not answer as a reply to wherever you read this on Facebook; but rather hit reply and answer on this blog.

My stomach just sunk when I thought of the question but if you know me, you know I speak my mind.  It might help us appreciate something a little more if you asked yourself this question and more importantly; if you answer it.

What would it mean to you if there was no more CWD?

I am a diabetes dad.

Please visit my Diabetes Dad FB Page and hit ‘like’.

21 replies on “OKAY, Now I am Asking YOU…..What Does CWD Mean to You?”

No more cwd would mean I have no support, nobody to talk to in the wee small hours when things aren’t going well. No one to share the triumphs and disasters, no one to send me hugs when it all gets too much. I cannot imagine life without my worldwide cwd family….

No more CWD would mean no more link to my DOC family that is necessary. No more finding others who live the same life that I have lived for the past 9 years. No more gathering of calm and understanding people to greet newbies who have just been told “Your child has type 1 diabetes, there is no cure” The thought of no more CWD is enough to make me cry.

wow. CWD was the first site I clicked on days after my first cwd was diagnosed. I had registered and booked the a trip to FFL a day after that.
What does CWD mean to me – the world. I mean it – THE WORLD. A world in which we all understand each other. We all GET IT. It was my first glimpse into a world in which normal was checking blood sugars, being a sleep deprived parent, where fruit roll-ups and juice boxes are medicine, and counting carbs was more than a diet fad.
CWD means friends. CWD means love. CWD means no one has to be alone.
CWD brings us together – it lets us into each others worlds and lets us know that none of us are perfect because even those that seem to always have their shit together sometimes send their kids to school with beer. 😉
A world without CWD – well that would just be sad.

I would feel incredibly isolated living a life that nobody else in my family or circle of friends or local community can understand. I would have to accept the level of ‘care’ & treatment offered as I would be unaware of the alternatives. I would be unsupported in my quest to give my child the best life I possibly can. I dread to think where we would be had I not found CWD UK last year. It’s members are my lifeline.

Things would feel very isolated and there would be nowhere to let off steam, share experiences, highs and lows.. There would be no one to put notions of walking on fire in my head and (fire walkers will understand this) I would have to dwell amongst the “NORMAL” people and would have no one to hold my “LEMON”! Life would be dull, feel blessed to have found such a strong and supportive (as well as funny and a bit bonkers at times) community xx

It could be read two completely different ways. Knowing what the acronym stands for, I would rejoice in that there were no more children with diabetes, that they had all been cured. But, since there is an emoticon up there that’s similar to the website that is the virtual family and support for all of those families out there living and struggling with this disease as well – moms, dads, you name it – I would say it would be a sad thing. Granted, some of what happens in those forums is downright dirty and has pretty well turned me off to using them, but others know the ropes and find solace there, and anywhere that provides peace of mind and comfort for people I say is a much needed thing.

Wow! At first I was going to say, no more diabetes.. woohoo.. That would be amazing. When you started talking about CWD though, they were my first go to site when I knew nothing. When I still have questions, I still go there. They are my information warehouse. I cannot imagine not having that as a resource. :/

I would be very upset. My son was diagnosed nearly 6 years ago at the age of 4, I had no knowledge whatsoever about diabetes. My endocrinologist gave me the CWD website and told me to go there immediately. I will be forever grateful for that instruction. I learned so much and felt so much better knowing there were real life people in the very same situation that I was. My son would probably not be pumping. Our first endo moved hundreds of miles away and we went through 2 more before finding one we were on the same page due to the information I got through CWD and the caring parents there who empowered me to remember that the endo worked for us and not the other way around.
I have never had the privilege of attending FFL but it is definitely something I would love to attend. I read about it every year and wish we could have been there.
My son began giving himself injections 2 months after diagnosis because CWD sent us a DVD about kids at diabetes camp that showed children giving themselves shots.
I still frequent the site and am saddened by the amount of new children diagnosed. I read more than I write there but I still am learning every day. I enjoy getting Jeff’s emails “what’s new”.
It is an invaluable place to go for information. I could go on and on. I learned about 504’s and the need for one, I learned how to speak with teachers and caregivers, I learned how to prime the pump easier….I learned there was more than one type of insulin, I continue to learn. I know that no matter what time of day or night there will always be someone there and that is priceless.

While it is my go to place to learn, ask and search from other parents that have been there, it is also a place to share the triumphs as well. Only other parents of T1D kids get the milestones that happen regardless of our kid’s diabetes.
You just instinctively trust another parent of a CWD for help and support.

All that said, it would be great to shut it down because of a cure 🙂 Or – we could rename it ‘children that Used to have diabetes” 🙂

If there was no more CWD then there must have been a cure and I would be desperately searching for the new site called “Children who used to have diabetes”. CWD gave me hope and strength. The people I have “met” through CWD have helped me through some of my darkest hours and cheered me through wonderful victories. CWD is family and I cannot even entertain the thought of losing my family.

I have met some of my very best friends in the world via CWD. Everything I know about diabetes, I learned from CWD.

The successful cure of everyone with type 1 making CWD unnecessary would make me the happiest Mom on the planet. But if the organization called CWD were to disappear for any other reason, it would mean the return of the huge black roiling clouds above the heads of everyone involved with Type 1 Diabetes. CWD is the only organization that has helped to make Type 1 Diabetes anything but a curse to our son. The emotional effects of having Type 1 Diabetes can be immediate, long-lasting and socially devastating. CWD and the Friends for Life Conference showed him the positives of being a cwd. He still feels isolated where we are, but knows that there are others just like him somewhere. Seeing role models who do whatever they want DESPITE diabetes can only be positive.
Nothing save insulin has helped him as much as the CWD FFL since dx 8 years ago! That is why I am donating to the CWD auction this July and hope many others will join me.

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