My daughter was diagnosed with T1D a year ago today (2/13/12), although I was emotional about it on Monday since that was the actual day it happened last year. I was just curious what people do to recognize this day. Do you treat your child to something special or do you try to forget all about "D-day"?
For those of you with young children, do you talk to them about it? Since Liz is only 4 and still has no real concept of time, I think it would be pretty meaningless to her.
We didn't do anything special. We just carried on with the day, as we do every day, for the last 4 1/2 years. We may note the date by mentioning it, but it's not something we celebrate. My oldest son was Dx almost 2 years ago, right before a holiday, so when that rolls around I can't help remembering and frankly, I'm always sad because that made 2 out of my 3 boys diabetic. It was a huge shock and while the holiday is supposed to be happy, I am sad.
Oh my, 2 out of 3? That does stink. And I'm sure you're always worried about the third child, as well. I have a younger son and I'm always worried, too, esp when he drinks a lot of water. Last year at the JDRF walk I had him (and me) tested through TrialNet, and the guy said I would get a letter if everything was fine and a call if it wasn't. So when the letter about my test results came in the mail on Saturday but Sam's did not, I was a nervous wreck the rest of the weekend and called first thing Monday morning. Luckily he tested negative last year, but the worry is ALWAYS there.
My son Eric was diagnosed on his father's 46th birthday, so we do not celebrate the "diaversary", although I'm always very aware of it. That was a pretty sucky birthday for my husband, because as if the diagnosis wasn't bad enough, the day before our 6-month-old filly had broken her leg and been put down, so he spent the day burying her and that evening got a call from me that I needed him to come from the hospital. I don't know that we did ANYTHING to mark his birthday that year, come to think of it. Don't see how we could've, though, given that one or the other of us was continually in the pediatric ward at Maine Med for the entire week.
So no, we don't celebrate it, because it's more important on that day to celebrate Mark's birthday. But that's also why we aren't likely to ever forget it.
PS Eric was 18 months old at the time of his Dx, he'll be 6 in April, so we have lived with it for quite a while. I don't know that I'll make a point of telling him one way or the other what day he was diagnosed, which is a little weird given that my TuDiabetes home page starts with the headline "The world changed October 6th"!
My oldest was diagnosed 2 1/2 years after my youngest while enrolled in the TrialNet study. When the youngest was Dx, they tested the 2 siblings and found that only my oldest had the antibodies they were looking for. The middle boy was told he had nothing to worry about so I don't worry either. I am confident that he will not have T1D. When they did find the antibodies in Raphael, he was enrolled in the study and 2 1/2 years later he had his first abnormal blood test and Dx. I really cannot worry about the 3rd one being diabetic since he has a cardiac issue that will require open heart surgery in the near future, so that is where I have to focus my concerns. Yes, my plate is full. Very full. But wait, you get mail on Saturday? Where do you live?
Wow, yes you're plate IS full. Did Raphael receive any oral meds when he first tested positive for the antibodies? I was told that is what they do, to see if the meds will prevent or delay the onset.
You're in Canada, right? We live in South Florida, and as of now the USPS still delivers on Saturday, although stopping mail delivery on Saturdays been discussed by the US gov't since the postal service's bottom line is continually "in the red."
Yeah, NOT a good birthday for sure. And to have your son diagnosed at 18 months is so unfair. 3 years old is bad enough, but younger than that is just plain cruel. I'll always remember Liz's D-day since it was the day before Valentines. To top it off, after I called my husband and told him to come home from work ASAP, he got a speeding ticket. Ironically, the cop's granddaughter had T1D, so my husband eventually got out of the ticket.
No, Rafi did not get any oral meds when he tested for the antibodies, perhaps because when he went back for the follow up test to confirm the result, the antibodies were not there! How's that for being screwed up? When that happened they kept him in the study for the blood tests but there were no meds...till he had the Dx of T1D.
Do you think women feel the pain of our children's Dx more keenly than our husbands? Of course it is upsetting for them too, but we were pregnant all that time, we gave birth, we went through so much to bring them into this world. I can't help but think that it is more painful or deeply felt for us. I guess I risk the wrath of "man"kind by saying this!
I don't know. My husband is actually still way more emotional about it than I am. I have my moments, but maybe it's because I'm so much more actively involved in her D-care and always focused on what I have to do to take care of her. Someone suggested to me that my husband has such a hard time with it because of the male "protector" role and he couldn't protect his little girl from this disease.
My daughter was diagnosed the day after Valentine's Day...2/15/12. I was actually thinking about the same thing you were. My daughter was 11 at the time so she remembers all about the day. :( And, I know that she knows that the 1 year "diaversary" is coming up because she brought it up last week. So, I really don't know what to do on that day.
i think this is how my husband feels too, yet he isnt always as support of me when we are having a bad D day and i am sweating the numbers or worried in general its that powerless feeling or god forbid the blame game his bs is what under your watch, you guys did what! of course i dont vocalize that but he can pick up on my body language! it does get easier as time goes on i was never big on celebrating a diaversery i think the first year or two we might of mentioned it but now we just let it slide and i am pretty sure jacob forgot about it, lets face it is is a sad reminder. since your daughter is so young i think i would let it slide. i am glad you are adjusting well, it is what it is and dealing with what ever is in front of us one day at a time is best, while celebrating all our small victories and all the little girl moments of your daughter that are not D related! amy
Hi Desi! since your daughter has the day on her mind i think i would do a so proud of your braveness day pared up with valentines day, we love you, we support you, you had a tough year, we are so proud of you day kind of thing but not overplay it, i think some kids have reality set in this isnt going away kind of thing around 1 year so tread lightly. and keep acknowledging all her things you love about her that are not D related! and dont forget the impact of the day on you emotionally it is a biggie the relevance of the day gets less and less as the years go by you are doing well! amy
Ignore it. If she wants to talk about it then sure, talk, but I wouldn't bring it up if she doesn't. I like the "business as usual" attitude on that day. There are so many painful moments in our children's lives, some more than other; I don't see why we should purposely bring up a memory that hurts.
I love this idea! Thank you!! We didn't want to just ignore it since she is the one that brings it up. We definitely tell her how proud we are of her in all aspects of her life...from her red belt in martial arts to her grades in school to something as little as keeping her room clean. Today was a hard morning for me and it just hit me driving in the car on the way to work. I broke down sobbing at how life has changed from last year at this time. I was honestly surprised at how hard this morning was for me. I wonder what emotions tomorrow will bring...
Thanks but I don't feel that (for us) ignoring it is the right thing. She has been talking about it often. I don't want it to be this huge elephant in the room. If that makes sense. And as much as last year's memory hurts it was also the beginning of her feeling so much better than she had in a while. She knows that her being diagnosed/treatment made her feel so much better!! She went into DKA Feb 15 2012 and I will NEVER forget the horror of that day but she doesn't have too much memory of it. She in a way associates that day (well technically a few days after) to feeling like her self again.
For sure everyone has to do what feels right for them. If my son wants to talk about that day, then we do, but it's not a day we consciously make an effort to recognize. I would never shut down the conversation if he wanted to start it, but I don't start the conversation. There are so many ways to deal with this situation, there is no one right way.
you are definitely going to feel some emotions, keep gratitude in there, gratitude that although treatment can be a constant burden it also keeps her alive and feeling normal like she mentioned after diagnosis and happy and hopeful. enjoy your sweet girl. karate girls rule! my younger son mason has his brown belt he is 12 and we still call him kung fu panda at times, funny i really dont have any nick names for jacob, he would kill me with his 14 year old really mom look, but my little guy i can still call boo or boopy! you sound like a great mom good luck tomorrow if you start feeling heavy try closing your eyes and send your girl positive affirmations "may you be well, may you be at peace, may you be free from suffering" picture her all glowing with sunlight around her smiling content face and feel the connection between the two of you. i do this sometimes when i know my kids are going to have a tough day ahead, i'll tell them i am sending them some metta or loving kindness while you are at it send the affirmations to yourself. i am a yogi and cant help sharing some of the teachings, just ignore me if you think i'm too airy fairy! bless you dear. ( what is your daughters name again, sorry i forgot, i'll send her some metta tomorrow!) amy
My daughter was diagnosed with T1D on 10/25/08 when she was 3 1/2 yrs old. I have to admit that we don't really celebrate the day. Not because we do not want to but more because we forget to. I like the name diaversary. Our support group calls it betesversary (pronounced beeteesversary)
What we do instead is have Diabetes days (aka Diabetes sucks days) 4 times a year. On the day of her endocrinologist appointments I let her take the day off of school. We schedule morning appointments and after we go to lunch and do something fun. (Shop, ice skate, movie, etc)I feel that since she's the one that has to endure the daily finger sticks, highs and lows, and doctor apppointments, etc she deserves a break. It's her day. Her choice.
We always talk about the day our lives changed and answer all the questions my little girl asks. We have pictures from the hospital stay too that are included in our photo album for that year. She does remember a little bit like how she felt before diagnosis and the hospital stay but I often wonder if she is just repeating what she has heard or seen in pictures or if she really truly does remember. For the most part she has no concept of what life for her was like prior to diagnosis.
Thanks for sharing all that. It's nice that your daughter gets 4 special days a year! I'm sure one day Liz will want to talk about it. When did your daughter really start asking questions or talking about it?
You know, I take a million pictures of my kids, but I didn't take any of her in the hospital. My husband still has a really hard time with it and he can't even look at the pictures of her in the days just prior to her diagnosis - where her face looked gaunt and her arms and legs looked like toothpicks. I look at them and think "Why didn't I see this?" My daughter has always been tall for her age, so I just kept thinking she was growing taller but not putting on any weight. But within a week after her diagnosis, she had gained 3.5 pounds.