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Do Children Dealing with Diabetes ‘Count’ for Wish Dreams????

tripThere are quite a few organizations that offer that ‘dream of a lifetime’ to those who have ‘life threatening’ conditions, does your child, with diabetes fit into that category?  Someone wrote to me yesterday and stated that they felt they certainly should be allowed to apply, as diabetes has stopped them from many things.  What do you think?

My answer to this questions would go something like this: Whether or not someone is ‘deserving’ of those once in a lifetime trips, is up to each organization granting the wish.  They are the controllers of  the money and they set the parameters of who is allowed to be awarded such a trip.  If they choose to grant such a trip rests solely on their decision.

But it does lend itself to the question if they know how serious T1 diabetes is?   For that matter, does the world-at-large know how serious it is?  There are only a finite number of trips allowed each year…….should those with T1 be included?

So I ask you today to chime in on the topic.  What are your thoughts?

I am a diabetes dad.

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15 replies on “Do Children Dealing with Diabetes ‘Count’ for Wish Dreams????”

I totally agree that these foundations that are so giving but it is their choice. Having said that I can only wonder if we did a better job educating them they would know how life threatening diabetes is. I often hear that children with diabetes ‘look’ healthy…

While I don’t argue that parents and children with diabetes struggle with diabetes and often the T1d does have a long road ahead, I don’t think these trips should apply to us. The reason being our road should be long and treated as such. As for myself, I do not want to be counted among those that are sick and perhaps have a short time to live ahead of them. Our disease is unique, but we are empowered to have fulfilling lives. Children who have terminal conditions have lost that empowerment and I would reserve those opportunities for them. I look forward to taking my own children on their trip of a lifetime (after living with t1d for 35 years).

I think they should be considered for “wish” dreams. Children with T1D live with a life-changing disorder that is fatal if not treated and possibly fatal even if treated, and they wake up every morning knowing that. Complications can take lives with little warning. Kids with T1D have their childhood years limited in many ways no matter how much us parents try to eliminate the barriers they face. Families of kids with T1D face large medical expenses that often cut into family budgets to the point of disallowing vacations or even small things like the occasional trip to the movie theater. Even with good insurance, insulin can cost $200 a month (or more?). I think very few people realize how dangerous T1D is, how expensive it is, and how psychologically challenging it is for the children (and their families) who have it.

That’s a tricky one! It’s hard because, as we all know, T1D can be life-threatening, and when it is, things will happen very quickly, and we never know if/when something might go wrong. Conversely, kids suffering from other life-threatening conditions might have a clearer idea of what/when something is likely to happen and so may be better justified in making their wish in a timely manner. I’d like to think that kids with T1 have a valid reason for applying because they have a lot to deal with compared to most kids, but then put them alongside a kid dying of cancer with months to live and the perspective changes again…

I would say that the general perception of T1 is that it’s not very serious. Not many people I have met, who aren’t part of the T1 community, understand how serious it can be.

Just this week, there was a media storm when a Sydney (Australia) cafe business posted about a new menu item on Facebook. It is a cinnamon jam cronut, peanut butter ice cream, dulce de leche and espresso (sounds yum, huh?!). They said “just come in & ask for diabetes”. Well, after a deluge of complaints from the T1 community and explanations that T1 is not caused by eating sugar etc etc, they withdrew the post & made an apology.

There was a follow-up discussion on TV about it and only one of the five presenters said that the parents of kids with T1 were entitled to feel annoyed by the insensitivity and ignorance of the post. The others said it was just a joke and everyone was overreacting and needed to get a life. One even made the comment that “if parents are – (as one post said) – worried every single night that their kids are going to go to bed and not wake up, then don’t take them to the cafe & feed them the dessert”!!! Nothing quite like reporting on a story that you clearly haven’t researched, is there?!

It seems that it doesn’t matter how much publicity T1 gets and how many people explain numerous times what it is and what causes it, the general public just don’t listen, don’t seem to care, definitely don’t understand and still feel like they have the right to make fun and criticise people with diabetes (both T1 & T2). As several people pointed out, you’d never see an item on a menu called Cancer, would you? But it seems that it’s ok to use Diabetes as the butt of everyone’s jokes, because it’s no big deal, right?!

I don’t think our kids should be included. Can it be life threatening? Yes, but so are peanut allergies, asthma, etc. The reality is that our kids will most likely be here tomorrow. For a child with a terminal illness, tomorrow may not come. The wishes granted allow those families to have one last memory together, something I would not want to take from them.

To follow up on Brenda’s earlier comment about children with diabetes ‘looking’ healthy, I would say that is because – in many cases – they ARE healthy. Personally, I consider myself healthy, and I’ve had T1D since I was seven years old.

To offer a “wish” to a child with T1D (particularly a newly diagnosed one) is like offering one last hurrah before they die. It would be anything BUT encouraging. I know that if I were showered with gifts and privileges like this when I was diagnosed, I’d have interpreted it as a distraction to divert my mind away from the inevitable tragedy that was looming — but thirty-three years later, I’m still alive and kicking. No one needs to think they’re being granted a “final” wish because of a diabetes diagnosis.

I wholeheartedly agree with those who fall on the side of “NO,” these wishes should NOT go to kids dx’d with type 1. Yes, type 1 is a life-threatening disease, but, as has been stated before, the majority of our kids will LIVE a good long life with type 1. Is it hard? Discouraging? Expensive? Frustrating? A massive producer of exhausted tears? You bet. But OUR KIDS CAN LIVE. Spend time with the family of a child with terminal cancer, who has a 90% chance of death within 5 years of dx. How about the ones who have no chance of surviving? This is who “wishes” are for. Our children are NOT staring death square in the face.

I’m now a 17 year veteran of parenting a type 1 (since he was 3…he’s 20 now). I’ve lived with ALL of the emotions, the emergencies, the panic attacks, the tears, the whatever you’ve experienced. We’re all in the same family here (and yes, my son has other accompanying things he deals with in addition to type 1, like many of our kids do). The point, again, is that OUR KIDS CAN LIVE.

Here’s a question for you if you’re wanting to shout from the rooftops that your kid has a deadly disease that is life-threatening and they should be the recipients of funding (which is what the “Wish” boils down to…it’s someone’s money that’s been given) to pay for a special wish, because they could die at any time…would you put that on their job application in 20 years? Their resume? Of course not! You don’t hide diabetes from a job interview if asked about health, but you’d represent it as something that has made them strong, made them self-disciplined, that has made them all the things that an employer could want. You’d say that although they have diabetes, they are as able as anyone to do whatever, that they are healthy, they just have to take some extra steps. (Remember, I DO know what it takes to live with D…)

Point is, there are a whole lot of lousy things that kids can get. D is a big one, and a bad one. A hard one. But OUR KIDS CAN LIVE. Not only that…they can THRIVE. Give the wishes to the ones who don’t have that chance anymore.

Tom-
My son was 9 when he was dx’d. We actually did our first WDW trip two months before he was dx’d. I read that years ago Disney would give passes for kids with Type 1 for rides… Now that my son is a teenager it’s not as important say as if he was 9 and we were planning a Disney or other Theme Park. I think our kids do deserve a break and if getting to jump the line makes them feel special – so be it. But I have heard that Disney does not do this anymore…

I am firmly on the no side. My son has been diagnosed only two years ago and My brother was diagnosed almost 50 years ago. Both of them would be insulted if you asked them this question. I cannot remember anything that my brother could not do because he was diabetic and I cannot imagine anything that my son could not do because he is diabetic. If someone is denying their T1D children experiences, then they need to meet with their care team and figure out how to make it work. We travelled internationally a month after diagnosis.

I have a friend with a child with leukemia. He has a VERY rough road compared to diabetes (he had a stroke at age 9 which has left him with mobility issues, he has minor cognitive issues, and has spent many many many weeks in the hospital. The whole family was completely disrupted for a couple of years. ) I know diabetes isn’t an easy life but I would NEVER trade for what my friend has gone through.

Yes, diabetes can be ‘life threatening’ but so can crossing a street, riding in a car or having severe allergies, asthma, catching the flu and countless other things. Having diabetes stinks, but no one said life is fair. yes, I’ve cried my share of tears and I hate it for my son. But the more I lament, the more frustrated he gets. He doesn’t see himself as near death or so fragile. He sees himself as a normal kid that needs to take insulin because his body doesn’t produce it. That’s how I see him too. In my opinion, that’s not the kind of child the wish foundations are here to serve.

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