When joining this group the question was asked wether I was a parent of a diabetic or patient. For 20 years it was easy to answer I was the diabetic but now I have to choose. My 11 year old daughter was diagonsed last November with Type 1 and my role as the diabetic has changed. Whereas, before I was the patient and the results of my actions only affected me, now she is the patient and I, armed with 20 years of experience, is responsible for her care. Maybe this was God's plan to give me the ablity, through my first hand knowledge, to take care of her. This was truly my worst nightmare came true. For years, Dr.s always told me that I should not worry and I listened. When my kids were little I would do finger sticks every couple of months to make sure all was ok. After several years and nothing happening I stopped the checking thinking that bullet had been dodged. This past November my daughter Lexie lost 15 pounds and had all the classic signs. One day I looked at her and that light blub went off and I said to her "here pee on this stick" and when I saw the large ketones, I nearly feel down. With a blood sugar of nearly 500 were at CHOP within the hour and life now has a new "normal". I know that my years of living with diabetes has been a benefit to me; it has given me the education to take care of her but there is someting to be said for ignorance and not knowing what could happen until it does. I check her sugars 2 times a night for the fear that she will have a low in the middle of the night. This is my biggest fear not catching that low!!! Because of my vast knowledge of pumps I was able to get her own a pump only 2 months after diagnoses and it has helped her both mentally and phycically. But not sure if I will ever get over the guilt......
Hi, Lisa.
First, welcome to Juvenation. You have picked the best place to come when looking for friendship and support. Here, we are all friends and can help you through your difficult times. If your daughter feels comfortable, I would try to encourage her to join Juvenation as well.
Just as you don't blame someone for your diabetes, your daughter is not going to blame you. There are lots of type 1 parents on here who also have type 1 children. In a sense, your daughter is very lucky because her learning curve will be shorter. You already have a vast knowledge of the disease and how to treat it, so she will be able to learn quickly as well. She has also grown up watching you take care of yourself - having a good role model is a great tool to learning how to care for yourself. Knowing that you have already made it 20 years and have accomplished many, many things gives your daughter hope for the things she can also accomplish.
We all know diabetes is a tough disease to manage. So far, it sounds like both you and she are doing a great job of adjusting and handling the changes in your lives. Do you think you need to speak with a counselor or therapist about your guilt? They may be able to help you move through this chapter in your life a little easier. Though I don't have any children, I found therapy to be helpful throughout different times in my life. They were able to provide me with coping skills I hadn't developed, and I now feel more able to make it through the day-to-day things without feeling sad or angry.
I wish you and your family the best, Lisa. Please continue reaching out to us and let us know what we can do to help you. By joining our community, you have made a great first step. We look forward to hearing from you again :o)
Hi Lisa,
I read you post and it really hit home for me because this has been a huge concern for me for quite a while, the fear of my child developing diabetes. I was only diagnosed with type 1 last year but my husband has been a type 1 diabetic since he was 9. I've been with him for 9 years now and have seen everything that he has to go through everyday. Before I was diagnosed it concerned me that our children had a chance of developing diabetes but everyone told me not to worry because the chances are so slim. Now that we both have diabetes I have found that I am even more worried.
In terms of the guilt you feel, I can understand that. I haven't had any children yet but when I think about the the possibly of them developing diabetes it really upsets me. I know that I would feel the same way. I've talked to my husband about it and he said that if our children were to get diabetes that they would have 2 parents who would totally understand what they are going through and be there to help him. As hard as this is for me to accept he is really right about that. Your daughter is extremely blessed to have you in her life to help her get through this and to adjust. I know that for myself having my husband helped me greatly, especially in the beginning. It was so overwhelming and I had no idea what to do sometimes and he was always there to encourage me to keep going and to help me.
I just wanted to let you know that you are alone in how you feel. This site has really helped me and I hope that it helps you get through this tough time.
So now I can tell you the perspective somewhat from your daughters point of view.My father was diagnosed with Type 1 diabetes when I was 4 months old and October will be his 21 years with diabetes! I was diagnosed in February of 2009. It was sooo much easier to have my dad by my side. And although I joke with my father and tell him it's all his fault, my father was the only person I wanted when I found out.
I was in patient first waiting for them to get me a bed ready at the hospital. My mom called my dad and he could here me hysterically crying in the back round for him. He has helped me in so many ways to get through this disease, and it makes it so much easier when there is someone there who knows exactly what you're going through.
Now of course, I have the fear that I will have children with diabetes. On my dad's side of the family, his mother was type 1, his sister was type 1, his niece is type 1, and her son is type 1. That's 6 of us in one family with type 1!!! Makes my odds very likely that I will have a child with diabetes!!!
Do not feel guilty! There's nothing you could have done anyway, just let her know that if she ever needs anything that you are always going to be there for her. You're the best role model she has!
Thank you for all of your support. It is truly a blessing to find a group of people that understands the unique and complicated disease that we have. For the past couple of years I have kept a journal; writing is my of way expression. Being able to tell my stories of my life with diabetes. For the past year, most of the writings have been about how the relationships closest to me have been changed do to my illness and now my Daughters. Having an outlet is so important and a support system. My husband is great and he has been my un-sung hero for years. He knows my moves before I do, he knows why I am drinking Ginger Ale and he reminds me that I ran that day and makes sure that I set the alarm for the middle of the night. I look forward to listening (reading) all the blogs and postings.
I love the quotes my husband always texts me quotes
"Those that complain the most usually have nothing to say"
M D'Imperio
Sorry you had to join us, but I can relate. It has been over 2 years since my daughters diagnosis and 30 since mine and I still cry at times from the guilt I feel. I too had her on a pump within 2 months. And Although she will only be 6 in a few weeks, the little turkey does everything for herself, with my observing and watching of course. I tell myself that if there was a person that could handle their child getting this disease, it was certainly me. My question to you is, do you check yourself in the middle of the night? The only time I wake up Courtney to check hers is if she was high for some reason at bedtime, but other than that I have never woken up to check either one of us. Is she having issues of falling low in the middle of the night or waking lowthat are concerning you? If she is not, then relax and give yourself a break at night. I can admit, I also fear Courtney falling low in the middle of the night, but we have her basal rate right where it needs to be and I know that if she is below 100 before bed to give her a small snack and she will be ok.
I do find it helpful that I can relate to what Courtney is going through and at times we joke about it. We have contests in the morning, at dinner and at bedtime to see who is going to have a better blood sugar level. We even celebrated her Diaversary the past 2 years with cake and ice cream. Kind of sick, I know. You know how to live with this disease and are being a strong and wonderful role model for your daughter. Use your knowledge to help her live a full healthy life, with a few pit stops to check her blood sugar or change a pump site. There is a group on here for Parents and Children with Diabetes, you may want to check that out. Any of the groups on here though, have wonderul people that are always willing to listen or give advice. Know you are not alone and there are many of us in the same boat as you. Again, sorry you had to join this group but it is a great place to be.
Keep in touch!
Amie
My concern is from my own experiences with low sugars at night for no reason. She will go low without any warning at night I have caught it twice. The routine is the same the numbers are within range and the low happens. I am starting to relax some because she is feeling the lows more now. I recently got a CGM and it has helped me in the night but at 12 she is not ready and I do not want to push her. I like the cake and ice cream neat.....we all need a little out of the routine to keep us sane!!!!!
[quote user="Amie Meenk"]
We have contests in the morning, at dinner and at bedtime to see who is going to have a better blood sugar level. We even celebrated her Diaversary the past 2 years with cake and ice cream.
[/quote]
I'm so glad to hear that other people than my dad and I compete with BGs! I also am getting my dad a card for what we call his "Betesversary" haha
You are experiencing my biggest fear... But expressing that reminds me of people who say stuff like, "I could never be a diabetic! I'd die before I'd give myself a shot." We don't get to choose, we just live the life that God gives us.
You and your daughter are really both going to be okay.
You are experiencing my biggest fear... But expressing that reminds me of people who say stuff like, "I could never be a diabetic! I'd die before I'd give myself a shot." We don't get to choose, we just live the life that God gives us.
You and your daughter are really both going to be okay.
So true..I also like the one " Just think it could be worse" of course it could. Those are the people who stayed home the day they taught sensitivity!!!
We will make it!!!!
I have found that the competitions help keep Courtney focused. Plus she is only 5 so it makes it fun for her, but glad to hear another pair of sicko's is out there. My husband calls us that. I even sent cupcakes to daycare for Courntey's diaversary and the teachers thought I was weird. But hey, if we are going to live with this we may as well have fun with it right.
[quote user="Amie Meenk"]
I have found that the competitions help keep Courtney focused. Plus she is only 5 so it makes it fun for her, but glad to hear another pair of sicko's is out there. My husband calls us that. I even sent cupcakes to daycare for Courntey's diaversary and the teachers thought I was weird. But hey, if we are going to live with this we may as well have fun with it right.
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Haha my mom always says in response to my dad and I competing. "Actually I think I won" haha
Hi Lisa. I was diagnosed at age two (33 years ago) and my oldest daughter Ellie was diagnosed six years ago at the age of four. Like you, I was always told not to worry about it, wasnt' going to happen. We found out at Ellie's 4 year well child appointment when they did the standard urine glucose dip. We had noticed her increase thirst but wrote it off to lots of things.
I can't say I've ever felt guilty. Maybe it's because we did TrialNet after Ellie was diagnosed and found my husband has the high risk genes. He also had a first cousin diagnosed with type 1 after we were married so I have knowledge that's it not TOTALLY my fault.
I was very mad though. Still am. I've dealt with this enough and I'm not happy Ellie is having to deal with it. I've turned the anger into action... I volunteer and we raise funds through Walk to Cure and Ride to Cure for research. It's part of our family and who we are. I'm headed to Death Valley, CA in two weeks with my husband (& 42 other riders from my chapter) and we will ride in our 6th Ride to Cure on 10/16.
There is a group out here on Juvenation for Parent & Child who have diabetes (http://juvenation.org/groups/parent_and_child_with_type_1). Thankfully, there's not too many of us in that group.
I've sent you a friend request.
[quote user="Lisa D'Imperio"]
So true..I also like the one " Just think it could be worse" of course it could. Those are the people who stayed home the day they taught sensitivity!!!
We will make it!!!!
[/quote]I am also tired of hearing the "be thankful, it could always be worse" remark!! Of course it could be worse, but it's bad enough just like it is, thank you very much!! And I deal with the guilt on a daily basis. Even though I'm not diabetic, I am her mother...the one that is supposed to protect her and keep her safe. This disease is so out of my control, it drives me crazy. We just hang on and ride the rollercoaster, I guess!
Lisa I think as a mother being a t-1 or not there is guilt. I feel guilty I cant make it better for my daughter. I feel guilty she lost 20lbs going from 70 something to 50 something (i thought it was only 10 by my scale) I feel guilty she was in DKA and had to life lifted to another hospital and I was aloud to go with her but relieved at the same time because the thought of getting in one about made me barf. I would have tho. I feel guilty for think she was turning into a devil woman even tho still a child because her BG was SO high for months. I feel guilty that she has to poke and test and pee on sticks. I feel guilty for it all and I am not a t-1.
thank you....I was hoping I was not the only out here. It is our job (as Mom's) to try and make it all OK.. and the frustration when you can't is overwhelming. It is really comforting to know that this rollercoaster, or otherwise known as our daily life, is a ride we are not taking alone. Never wishing this on any other family but is comforting to know that there is a community out there.