Best & Worst things to say to parents of newly diganosed?

[Tomdiorio]

I agree with the others, something's said can enrage one parent and help others. I guess it depends on the person.

For me, however, my son had bacterial meningitis at three months old. The next morning the infectious disease doctor came in and told my wife and I that "I didn't want to come in last night because I would have had to tell you he might not live through the night". Why would he even tell us that after the fact.

Anyway, that sort of prepared me for anything the endo could have told me.
Although...Ds was dxd at 10 months, the nurse educator told us "wow, we haven't had anyone here that young in 10 years".

Again, I think it is different for everyone.

[shannong]

Originally Posted by mysweetwill

I am sure I have the minority view here but I actually didn't like when the nurse said to my son, "you can still do anything every other kid can do" because it never dawned on him he couldn't. I also happen to really dislike "the new normal" phrase, because 9 mos in none of this is really normal. That doesnt mean I haven't accepted the new reality (maybe that sits better with me for some reason) and am still learning ways to make it just something we need to deal with while living life to the fullest, but seriously, not one piece of this is normal.

What I did appreciate was hearing the truth from other d parents. This sucks, sometimes you feel helpless, it will beat you down, BUT you can do this. It isn't fair but your actions will form how your child lives his or her life- cry when they aren't around but teach them through actions that it will not define them.

Just my two cents.

Ditto to all of this!! Wow, how I hated hearing that "new normal" phase. Now I can say this - but I needed to come to that state of mind. I didn't need someone acting like frankly it was no big deal on the day he was diagnosed. I remember the nurse just acting all up-beat and saying that stuff about how he can do anything he wants. The whole time, I'm breaking apart inside and I felt like I had no right to cry, that my child had no right to cry. Really, what I wanted and needed to hear is, this is HARD, but you and your child will get through it.

[susanlindstrom16]

On our second day in the hospital, when my daughter was in the ICU, the social worker from the endocrinologist's office came by to visit with a beautiful girl in her first year of college (probably about 18 years old) who had been diagnosed T1 at 16 months old. She talked to us for a while, showed us her pump, told us how her first year away at college living in the dorms was going. It made me feel so good to meet her and i often think about her when i start to get overwhelmed with things. My daughter can be just like her some day and that makes me happy.

[Momontherun]

When you are overwhelmed and everything seems chaotic, plus you are worried about your kiddos future. I remember as a friend told me sincerely, diabetes is manageable and you can make it work. I hate diabetes but the fact I can manage if helps me to stay focused on learning what I need to manage it while letting my kid be a kid and learn in due time.

This may be corny but everyday, I say, Praise god for insulin.

[Tomdiorio]

Originally Posted by Momontherun

This may be corny but everyday, I say, Praise god for insulin.

Agreed. Thanks to Sir Frederick Banting, Best and the rest of the team.

http://en.m.wikipedia.org/wiki/Frederick_Banting

[Momontherun]

Have you read Cheating Destiny: Living with Diabetes, America's Biggest Epidemic by James Hirsch? The book is from 2006 and is a book on the history of insulin and what it means to live with diabetes. It is a interesting read.

[Nana'sMom]

BEST
Said to Me:"Are you depressed? Don't be. They (children) are stronger than you know. They are stronger than you." And,

Said to My Child: After she was diagnosed, her endocrinologist made her list her favorite food, ticked off everything one by one, saying "Check!" for each food listed. Then at the end, he told her, "See, you can eat still eat all of your favorite food!" Then proceeded to explain to her that she only need to change some of the ingredients, eat at the right time, and limit the amount. My 7 year old was ecstatic!

WORST
Said to Me: Her teacher/adviser told me the first day she got back from DKA hospitalization (after diagnosis), "I saw her buying food at the canteen the week before she got hospitalized! She's been eating all sorts of food! So, I told her classmates never to share their food with Nana."

[shannong]

Originally Posted by susanlindstrom16

On our second day in the hospital, when my daughter was in the ICU, the social worker from the endocrinologist's office came by to visit with a beautiful girl in her first year of college (probably about 18 years old) who had been diagnosed T1 at 16 months old. She talked to us for a while, showed us her pump, told us how her first year away at college living in the dorms was going. It made me feel so good to meet her and i often think about her when i start to get overwhelmed with things. My daughter can be just like her some day and that makes me happy.

The first week after my son's diagnosis, I was out walking the dog with a group of people who regularly meet at the same park. Turns out that a woman who I have seen almost every morning had Type 1 since she was 5 years old. I had no idea and it only came up when I told them about my son. She is in her 40's, a mother, and the picture of health. This totally changed my whole mind set about what the future will look like for my son. It would be nice if hospitals had some kind of program where we could meet adult Type 1's. When you read all about the scary long term consequences, it instills a certain fear in you. But after meeting healthy, adult Type 1's, I was filled with hope.

[mmgirls]

Originally Posted by shannong

The first week after my son's diagnosis, I was out walking the dog with a group of people who regularly meet at the same park. Turns out that a woman who I have seen almost every morning had Type 1 since she was 5 years old. I had no idea and it only came up when I told them about my son. She is in her 40's, a mother, and the picture of health. This totally changed my whole mind set about what the future will look like for my son. It would be nice if hospitals had some kind of program where we could meet adult Type 1's. When you read all about the scary long term consequences, it instills a certain fear in you. But after meeting healthy, adult Type 1's, I was filled with hope.

My dd was dx'd at 13 months old and is now 8. Whenever there is a younge child/toddler dx's I will get a call to take the JDRF bag of hope to them while in the hospital, of course that means taking my dd along. This last winter the little girl was in kinder and her older sister was my dds age and it was a good experience for them to see my dd almost 7 years in and as normal as can be.

The ability to see a pump and site and CGM on my dd help them put togeather in their mind what the tech was about. That is something that I wish I had when my dd was going on the pump, to see it on the kid not just in hand or on me.

Everytime we meet a T1 I point it out to her, last time it was the Jiffy Lube guy and his mom too. For me it is most important to point out the women with T1 that have had families.

Which brings me to the original tocpic of this thread.

The worst thing said to me by a neighbor was that she would not be able to have a baby, he had a freind with diabetes that had multiple pregnacies that all ended in miscarrages that she finally had her tubes tied to not go thru the heartbreak abain that her body could make a baby but not bring it into the world because of her diabetes.