False Hope for a Cure

by Leighann on April 15, 2010

As I edited this post, I realized that I had written a similar draft that was in queue just waiting for me to hit publish. If you haven’t already done so, read False Hopes and Blame.

My daughter and I were watching some of the video submissions for the Lenny the Lion contest. In one of the videos, a kid says something like:

One day there will be a cure, but until then I can use my insulin pump to make diabetes easier.

My daughter looks at me with big eyes:

What? There’ll be a cure one day? I don’t want to have diabetes; I want to be a normal kid!

I told her that maybe there would be a cure in five or ten years or sometime in her lifetime, but not any time soon. She said that maybe it will be in only one year.

I know that some parents are very focused on finding a cure and I have heard countless kids mention finding a cure some day. That’s all well and good, but the reality, the reality that we live every single day, is that there is not a cure in the immediate future.

My husband and I have chosen not to give our child false hope for a cure. Why set her up for disappoint or make her think that having diabetes is a temporary condition?

Why not focus on the here and now with a positive attitude doing the best we can with the resources available now.

To me, telling my child that there will be a cure is akin to saying that she is somehow deficient as she is now. I don’t want her to think that she is less than whole. Don’t children have enough esteem issues as it is? Don’t they have a heavy enough burden on their shoulders?

I say let parents worry about funding and research. I say let parents hope and dream for medical advances. I say let parents worry about the details. I say let kids be kids and live in the moment. Live in the here and now. Just live.

She said that a cure would make her “normal.”

She is normal despite her diabetes.

She is normal.

She is.

Related Posts Plugin for WordPress, Blogger...

{ 8 comments… read them below or add one }

1 Bernard Farrell April 15, 2010 at 7:01 am

Really, there’s no ONE normal. I’m normal with diabetes and asthma. My sister’s normal with osteo arthritis. There’s been a lot of bad stuff done to make folks conform to some idea of normal.

Personally I’m hoping for and working to support a cure. When I was diagnosed in 1972 the docs told my mum that there was going to be a cure in a few years. So you’re definitely working the right way. Oh, and if you have any millionaire friends, ask them to throw some money at Dr. Faustman’s work!

Reply

2 Leighann April 15, 2010 at 8:56 am

Thanks for commenting Bernard.

I was a little surprised to hear her say “normal kid” because I really didn’t know that she somehow saw herself as “abnormal.” It’s amazing how young these notions of one’s self start.

I agree with you. There is no ONE normal.

Reply

3 Traci April 15, 2010 at 7:15 am

I love your website, and appreciate your thoughts on this subject. So true! Growing up, my husband admits to being excited about different news on cures. 28 years later he’s learned to ignore the news until it’s something that is “newsworthy.”

Reply

4 Leighann April 15, 2010 at 9:00 am

Traci- That’s exactly what I am trying to avoid. I don’t want her dreams to be dashed over and over with news of a potential cure…or a cure like a transplant that leaves you worse for the wear!

It was interesting when I polled readers way back if they were told at diagnosis if there would be a cure in ten years. See the poll here: http://www.d-mom.com/quick-bite-cure/ And if readers haven’t answered the question, please do!

Reply

5 Meri April 15, 2010 at 9:17 am

I don’t think there is anything wrong with giving your child something to hope for. Hope is a very powerful thing. It isn’t a regular subject in our house, but when it does come up, ie. walk for a cure, I am honest with them about it. I tell them how it is. I think kids understand more than we give them credit for. “Yes, there are people working tirelessly for a cure. I don’t know if it will be next year, 50 years from now, 100 years from now, or ever. But they are working night and day for you and all the others who live with Diabetes. If we can help them by raising money so they can find a cure someday, even if it isn’t for us, I think that is worth our time.” And they agree.

Reply

6 Heather April 15, 2010 at 1:50 pm

I agree, I don’t want to give my daughter a false hope either. It’s hard enough for me not to get my hopes up. Sometimes I find it hard to wish for a cure because I don’t want to get my own hopes up, even though I would like a cure more then anything. Thanks so much for sharing.

Reply

7 Rachel April 16, 2010 at 10:42 am

WOW! I see this very differently. I won’t hide anything from Tristan when it comes to HIS diabetes. I tell him how important it is for him to manage it properly so that he lives long and healthy. We also discuss the fact that some scientists are working really really hard to find a cure for him and every other diabetics out there.

Does it give him hope yes it does…….. does he live off of that… no he doesn’t. He’s often said that he wants to be a scientist so he can find the cure for diabetes…. what’s wrong with that? I don’t understand how that’s giving them false hope. I’m not making him any promises and I’m not giving him any guarantees…. but I’m also being truthful with him.

As for them being different…. it doesn’t really matter what I do to protect Tristan from it… he feels it! Nobody else in his class has a pump, nobody else in his class needs to leave to go the nurses office to have their blood checked…. etc.

I think communication is key in every aspect!

Reply

8 Charlotte March 26, 2011 at 3:54 pm

My little six year old granddaughter was diagnosed this week. Shock, grief, fear and still crying.
I agree with everything written here. Everyone wants a cure but you can’t live in the future for something that may be a decade away. We have to live in real time or risk losing the precious moments of today.
When the cure comes it will change our lives. We pray for that day but in the meantime life continues.

Reply

Leave a Comment

Previous post:

Next post: