My 13 year old daughter was just diagnosed 9 days ago on January 19, 2011. Our family has pulled together to help her through this and I have stayed strong and calm for her, but when I'm at work or running errands on my own, I get very weepy and will cry at the drop of a hat.
I have a strong faith in God so I know that everything happens for a reason and that everything will turn out okay, but some days I can't help wondering why this happened to her. I wish that I could take it away, but I know that that's not realistic.
On the night that we took her to emergency and she was admitted, my husband spent the night with her and I went home to be with my son. I couldn't sleep that night and cried myself to sleep. When I woke up in the morning, it was weird. For a second I forgot about what happened and then when I remembered, I had this sadness and dread with me. It was a lot like when my Dad died ten years ago. I guess in a way it's like grieving for the old life that she won't have anymore.
Since my daughter has been diagnosed, I have been comforted by the fact that it is a manageable disease and that she can live a long life. People at work and customers who have kids with type 1 have reached out to me. They have been great. I'm also comforted by the fact that my daughter has been brave through this and has taken everything in stride. I read in one of the group discussions that this may change, so I will just hope for the best.
I would really like to join a support group, but my husband and daughter don't want to go. I really don't have the time anyways and just want to stay close to my daughter. I was happy to have found this site because it's the next best thing to joining a support group. It's comforting to hear from other people that are going through the same thing you are. My extended family (brother and sister's spouses and families) have been really supportive too, but I feel a bit separated from them now. They get to lead their nice lives and while they take an interest in how my daughter checks her blood glucose level and how she takes her insulin, they just really can't relate.
So thank you in advance to everyone for sharing their stories and tips. I hope one day that I will be able to provide the same wisdom and help.
You've sure landed in the right place! I'm the T1 in our household (so far, knock on wood - the ONLY T1 in our household) - I started out with a slightly different set of tools and used the combination of worse tools and being a difficult teen by nature to be pretty bad about my management from a few years after my diagnoses until somewhere in my mid-twenties when I started to get myself together... I share this much to say I do not have advice except that reading material with solid references behind it and asking a diabetes eductor or endo is is a much easier way to learn than running out and making every mistake (some twice)... I've tried both methods.
The only piece of near advice i will offer other than the above is this:
For many years, I looked at my blood sugar values like numbers on a score board. Did I win? - the problem with this for me was that being competitive and not liking to fail, i'd dodge testing when i knew my sugar was off and when I was worried i might be off. Less testing equates to worse control for me. So really wrapping my head around the fact that it's about living life on the averages and no one number, indeed no three days of numbers really colors the whole of any one A1C nor will those numbers ever get the last word if I'm testing often enough to stay in good control. Oh - and poking yourself all the time... yeah - it sucks, it just beats the alternatives - at least, for me it beats the alternatives - everyone of us finds their own path - their own obstacles and their own tricks to get over, through or around them. Your daughter will find hers - your support is awesome.
I look forward to hearing more about how you all are doing.
Cheers,
A-D
dx4/83, Omnipod, Navigator and a complete lack of common sense...
P.S.
I shared this with somone recently - Looking back, I now feel (as strange as this may sound) that my diabetes diagnosis was harder on my parents than it was on me. Especially now, as a parent - so much easier to be the one living with it - even knowing what I know - I'd hate watching either of my boys have to manage this - and yes, it may yet happen but I'll fight the battles as they arrive -
I am brand new to this site as well. My Jilly was diagnosed Nov 16 2010. My life changed forever. I am very fortunate that she an amazing, strong little girl. I look at her an am in awe. She makes me proud. She has adjusted so well, I am very lucky. As you mentioned this may change, but one constant is that she will always have me. Much like your daughter will always have you for support.
It is funny, I read your post this morning after I had a bad night. The day was normal, testing normal, nothing out of the ordinary. After I got my kiddies in bed, I sat at the couch and I cried. I weeped. It was one of those cries that comes directly from your heart. Why her? WHy us? What did I do wrong? Why did she get this?
You grieve. My cry last night was much like the cry I had when my grandfather passed away. It hurts. My heart breaks for my daughter. What she will have to face in life. Will she find a good person that will take care of her one day, like I take care of her? Will she want to have kids?
I decided that I have to take things one day at a time, more like one minute at a time. If you don't, you take on too much. We just need to worry about our immediate future. The here and now and taking care of our kids to the best of our ability.
I would like to say it gets easier....maybe it does. We are a little over 2 mos into it. We are getting into our routine. Our numbers are all over the place still, most bc of no reasoning at all. I don't cry alot, but like I mentioned, last night I cried for 2 hrs. I had to let it out. Let yourself cry. You need to do it for you.
Also, like you mentioned above: I always tell myself THANK GOD it is manageable. It is not an easy manageable but it is MANAGEABLE. When you are at the hospitals you see so much and you thank God that you can manage it. I find alot of comfort in that alone. :)
Sorry to hear that! I"m also 13 and was diagnosed in August 2010. I have been helped extremely by the school nurse, she's amazing and so supportive and there are 2 other diabetics in my grade (we're the only 3 in the school) but still knowing I'm not the only one helps a lot! My mom and I go to a support group once a month at the local high school! So you may want to look around your area to see if you can find any local support groups and if they won't go, go by your self! The people may help you answer any questions you have or you can just talk. My mom feels better after going. we're also here to help you so if you have a question ask!
Yes you are in the right place. My daughter was diagnosed in May 2010. She is now 10. Read all you can. Think Like a Pancreas is great book to really understand good management. Type 1 is a major pain but it can also bring your family closer together. You will be too busy to mourn so do your mourning now. You will feel better soon when you see that in fact you can manage her type 1 pretty well.
Amanda, your feeling are very natural! My son was diagnosed 8 months ago at the age of 7. I was crushed for him and for our "old" life. nothing has been the same since. But there is Hope! We have a new normal, and sometimes it takes a little longer to figure carbs out and sometime we just plain avoid foods because we can't figure it out! But I have my son! and we have insulin that can keep our children healthy! and someday hopefully we will find a cure! That is my prayer!
If you are on face book, there is a really awesome group of parents on a site called T-1 Parents. we share ideas, struggles, experiences and encourage one another! you have to be added on by a friend so if you like to join please send me a friend request and I will invite you on! It is a private site so we are able to share! Look me up! you will not be let down! Sandra Martin Dixon
Amanda and Sara, welcome to our community! Your children have been diagnosed at a time when much knowledge about diabetes and its management is readily available. Modern day technology is first rate and will enable your children to have good control.
I was diagnosed in 1945, when I was 6. Now I have been type 1 for 65 years and am very healthy. With your love and care your children can have long, healthy lives.
Ask all the questions you want, there are very experienced type 1 diabetics here to answer your questions. Good luck to you and your children in the months ahead!
Welcome to Juvenation!! I have a 16 year old son who was diagnosed as T1 it will be 2 years ago in March when he was 14 years old. I remember feeling the same exact feeling and saying the exact same thing "Why my son?" I can say this, it DOES GET EASIER..... I promise you that. I know you can't imagine that it ever will, but it does. My son is living the same active life he did before he was diagnosed except now he has to test and take insulin. He is a top notch athlete and is an excellent student at school and he has accepted the Diabetes VERY well. He has a great attitude and outlook on living with the disease and he is my hero!!! If you ever would like to talk, please reach out to me. I would love to be able to help you. My heart goes out to you and your family, but you will all be fine!! I PROMISE!!
Reading these sorts of posts gives me some insight into how my
parents must have felt when I was diagnosed. It makes me sad to realize
what they must have gone through (and probably still do to some
degree)!
I was 10 when I was diagnosed. My parents educated
themselves and were very supportive and told me that I could do whatever
I wanted to do in life. Now, over 20 years later, I have, indeed, had a
relatively normal life. I did well in school, ran track, played in the
marching band, went to college, spent a semester abroad in Italy, and
now I have a career and am getting married in the fall.
Everyone on this site is a testament to the fact that diabetics are strong and healthy people that have normal, happy lives. She will need to work at it, but your daughter will be fine!
I am also 13 years old (and a girl!) and at diagnosis (almost 3 yrs ago) I really thought that my social life was ending and that I would never be the same person. In some ways I was right but not how I thought at the time. I am a much better person because of diabetes. I am more responsible and aware of myself than I was pre-diagnosis. I manage fine with my diabetes care (very independently, too!) and can participate just as much as my friends socially. You may think now that life is going to be different now but you can find a way to manage diabetes so its not a diabetic's life but more a routine that a diabetic follows. I am very independent and I don't let diabetes get in the way of my life. I go on school trips and sleep over my friends houses, but most astounding of all is that I attend an overnight camp 2.5 hours away from my house that is NOT a diabetes camp. In fact, I am the only diabetic at this camp. I just spent 8 WEEKS in the woods at least 30 mins away from any sort of civilization. My parents have little contact with the nursing staff and I manage almost completely independently. I am also applying to boarding schools for high school where I would manage almost all of my diabetes care.
Don't worry. I know things may be looking down now but they will get better soon.
I hope this helped! If you have any questions feel free to contact me!!!!
Welcome to Juvenation. Don't give up on the 'live' support group just yet. it is still early and your husband and daughter have to adjust too, and will experience many of the same emotions you are. Diabetes can be very emotional and it is important to let you duaghter know that you are sometimes sad about it and it is OK for her to talk with you about what she is feeling.
Yes, I agree...it may be harder on the parents. My daughter is doing so well with it and takes everything so matter of factly. As parents, we are supposed to do everything we can to protect our kids and my heartaches knowing that I couldn't protect her from this.
Just as an example, we had a cancer scare with my husband this past November. I love my husband very much and was really upset at the time. I worried about him being gone and what it would do to our life and my kids, but this...for my daughter...wow, it hurts. Just thinking of losing her kills me.
Thanks for your message! I pray that your boys will be safe from this disease.
Yes, I agree...it may be harder on the parents. My daughter is doing so well with it and takes everything so matter of factly. As parents, we are supposed to do everything we can to protect our kids and my heartaches knowing that I couldn't protect her from this.
Just as an example, we had a cancer scare with my husband this past November. I love my husband very much and was really upset at the time. I worried about him being gone and what it would do to our life and my kids, but this...for my daughter...wow, it hurts. Just thinking of losing her kills me.
Thanks for your message! I pray that your boys will be safe from this disease.
I tried responding to each person, but don't understand how this all works yet. The messages are going to the bottom of the thread instead of replying back to each individual message.
Everything you have told me is what I've heard from friends at work...that you can live a normal life and that kids can excel athletically and that nothing has to stop them. That gives me hope and it gives me hope hearing from each and one of you, so thank you again for your messages. You are all an inspiration to me.