My son was diagnosed in July of this year. He has done amazingly well with monitoring his blood sugar; taking his shots; everything. As a family we have done well also. But there are some days as a Mom that I just want to cry my heart out for my little boy (he's 10). The questions of why did this have to happen to him. Of course, medically we have all the answers the doctors do, but sometimes I search for something deeper. I try hard not to feel sorry for him or myself but today is just not a good day. I never let on to him. I always tell him how proud of him I am.
When he was diagnosed, we of course had no idea. He was sick, took him in, and next thing we knew he was airlifted to a hospital in the city (we live in a very rural area) for better care. I guess the shock of it all and how serious it was makes it hard to deal with as well.
Just needed to vent and see how other parents deal with bad days like today.
Jackie, I wish I had better advice for you. I was only 4 when diagnosed, so little memory of those first few months. But, it sounds like you're doing the right thing to vent! While people may act like insulin is a cure, in fact, as you're finding out, this disease is really tough and you never get a day off! Then, the guilt of being a parent to a child living through it must be terrible.
I hope you are able to find some deeper meaning -- whether through volunteering, education, religion, whatever. Over the years, I've gone through better and worse periods dealing with D. The extreme stress, for me, hasn't been constant, not that I ever love this disease. Finding understanding people to listen has been helpful to me.
Jackie My daughter was dxed 12-15-09 so not even a year ago she just turned 10 in August. I will tell you those first few months I didnt think I would make it. Riley did great after the first month or two she stopped crying here or there about it. I didnt and I still do from time to time. For me the why matters little even medically we are not sure why it could be this or that. Nobody else in our family has it as far back as we can tell. My daughter was also air lifted to another city and we live in the third largest in the state. They just felt the other two hospitals were better equipped to well save her life. It took them longer than they thought to get her to wake up and in reality she could have died. I hold on to the fact that she didnt everyday and that keeps me going. I guess for me the why matters little because I also have 12 year old twin autistic epileptic boys. They were born at 35 weeks but I wentinto preterm labor at 30. The docs then let me know it was 50/50 if they would make it if born at 30 weeks. So I feel even tho all 3 of my kids have issues I am dang lucky to have them here with me today so why just doesnt matter. I would rather not know why than not have them here with me. Driving me nuts going through puberty talking back but most of all they make me smile and proud.
I am sorry every time there is a new parent who has a child diagnosed with diabetes. It is hard and it is a whirlwind of information. You are so concerned with caring for your child correctly, that you forget about actually experiencing the emotions of it all. My 3.5 yr old son was diagnosed May 28, 2009. It was sometime in August before I really started processing my own emotions about it. I had to realize that it was OK to be sad and grieve the loss of my child's perfect health. There are a lot of dreams and assumptions that go out the window when you get this diagnosis. I'm not saying that there is anything your child can't do, it's just that the 'simple, normal' way to accomplish them is gone. So I'd advise finding some time by yourself (or with your husband or a friend) to work thru your feelings. I took like an hour every day (or every few days) to really think about and feel what I felt. Journal it, or cry it, or scream it, or throw water balloons at the side of your house, or whatever you need to do work thru the anger and grief. Then when your hour is up, you can put all your feelings back into an imaginary box and go back to your everyday life. It was surprising to me how much better I felt after a few days of doing this.
You will still have bad days. Your son will also get frustrated at times and have bad days. I've now decided that its OK to have my son see me cry about it, that its OK to be frustrated and that it is normal to have these feelings and you need to work thru them. THat it isn't healthy to keep them bottled up. I'm surprised how this seems to help him (now that he's five). Most days though, you will have your new normal routine and D isn't that big of a deal. But the first part it is normal to feel like a wreck, no matter how composed a face you are putting on for the world.
And of course, it is always great to come here to vent anytime. You will always find someone who understands.
Thank you so much for all your support! Today is a better day. Becky, I did take your advice and I did an hour or so of crying and felt so much better.
And Jessica, it is good (??) to hear about someone else coming close to losing a child. You are a very strong person for having been through it multiple times. When my son was airlifted it seemed my family and some friends really didn't understand how close we came to losing him. And I think at that time I really needed someone to understand that.
Today is a better day and thanks so much for your support and allowing me to vent. Your thoughts and ideas and sharing is so important!
Hi Jackie, I was diagnosed when I was 22, which isn't quite 10, but I always remember what my mom told me.
She told me that maybe I had D because I could handle it. Because I could keep it together and make it through (and that not everyone could). Maybe that would piss some people off, or rub them the wrong way, but I decided that maybe my D is here to test me, to prove to me and to everyone else why I'm special.
Whatever works, right?
Even though I got D late... I think finding out that you're not perfect can give young ones a real sense of perspective. It certainly made me a lot more thoughtful, a lot more process oriented.
My mom was really upset when she found out, she didn't "feel better" until years later. And she didn't (and never will) get a chance to understand what managing diabetes really entails. She never was my care provider so she... just can never get it the way your or I could. It's not her fault, it just is.
But anyways, there are really really hard days. And then there are good days. I think that sometimes it's okay to say "I know this must really suck, but that's the way it is. And I love you." But also there are days where you can't give the D any ground and just have to manage it with a smile and a stiff upper lip.
Best of luck, your son is lucky to have you! (And stick around, there are lots of tips and tricks from people who have been through this before. We'll have oodles of opinions whenever you want them;)
Thanks John. One of the educators on our endicrinologist team told me and my son that also.. that he is special and can handle this where a lot of other kids his age maybe could not. I am very fortunate to get the opportunity to learn with him and help him as a caregiver. He does most everything himself but I like to at least try and help.. and always learn.
The support here on this site is incredible. Thanks everyone :)
Like John says, you will be able to handle this. My daughter is 11, and I have to consistantly say "God has NOT given us more than we can handle". You have every right to feel sorry for yourself and your son, but don't let it completly envelope you. Look at how much stronger you are to take on the "little" things, that most people take for granted, and don't have to stop to check sugars, and eat, or take a bolus. I have promised myself that I will NEVER tell my daughter she cannot do something because of her Diabetes (with the exception of the military, of course). Juvenation has been the most wonderful thing for me since she was dx'd. I can go on here and realize I am not the only person with the questions I have running through my mind, and also hearing from people who have had this for years also helps me know that we will be ok.
Jackie I know what you mean most people dont get how close we were to losing Riley either. I honestly dont think I realized it right away either. I was scared but it didnt hit me right away how bad off she was. I didnt even cry to much that first week I was to scared to. After tho the flood gates opened up and I cried both for her and that we still had her.
Your post brought tears to my eyes, because I have had the same feelings. My daughter, Sarah, was diagnosed 6 months ago at age 15. As mothers, we are supposed to take care of our children, and keep them safe. Diabetes, unfortunately, takes the control away from us. The doctors said that it was not our fault, and did not happen because of anything we did or didn't do, but I still find myself thinking back to my pregnancy with her, and all of her childhood years. Was there something that I did or didn't do that caused this??? I was so careful!! So I deal with guilt alot. But I'm trying to be thankful for what I can. Sarah is a very mature young lady. She's handled D very well so far. It hasn't been easy, but she's doing her best. I worry about her all the time, but I try to keep it to myself, and put on a brave face for her. I just try to take one day at a time. This site IS wonderful. You won't feel alone when there are all of these fabulous people supporting you!
I also know how you feel. Sarah was diagnosed about 7 months ago at age 10. She was always my healthiest eater - the one we never had issues with vegetables, fish, etc. She thinks soda is gross and has always been a crazy water drinker (part of the reason it took us so long to realize something was wrong, because she always drinks endless amounts of water!).
So it seemed impossible that my super active, perky, healthy child could end up with diabetes! I question it everyday, and it doesn't help that there doesn't seem to be a difinitive cause: is it heriditary, viral, something else? Maybe it would help if I knew that answer.
Anyway, know that there are bunches of other parents dealing with the same frustrations: kids that have to mature too fast because they have to think about their diabetes every time they put something in their mouth, kids for whom a simple stomach bug can be crazy serious, kids who need to learn to manage and not give up on managing during their teen/young adult years because of the risk of later complications, etc. We have to worry about managing the lows today because if we're managing lows it means we're keeping their blood sugars in a reasonable range, and we have to worry about how long-term higher than average blood-sugar will affect their future.
I've come to the conclusion that we just have to accept, at least for now, that there are no answers for us. We don't know why, and we can't predict what the future will hold. The best we can do is manage their diabetes and teach them to manage it - while always being prepared for anything that can go wrong.
I was diagnosed in 1945, when I was 6 and I know my mother cried a lot during my first weeks/months. She told me about that years later. There was very little known about diabetes back then. It is good today's newly diagnosed children have the advantages of all the knowledge that now exists, diabetes specialists, better insulins, meters for testing, pumps, etc. i sometimes wonder how I survived.
I hope you and your son continue to do well. I have been type 1 for 65 years and I am very healthy. With your care, your son should do well. He will probably grow up to be an old, healthy geezer like me. Lol!
Diabetes is an emotional roller coaster. There are ebbs and flows to the sadness. It takes time to go through the mourning process. Let yourself mourn. This isn't the life you wanted for your child. Grieve as long as you need to, and soon you will find that the dust will clear and you will feel alive again. Look to your son. Follow his lead. His strength will be all you need to get through.
I get through by counting my blessings everyday. I never have to look farther than my boys. They accepted all of this long before I did. They have grown stronger and more amazing everyday. They have made the most of this situation, and because of their example...I will too.
Sending love to you from someone who has SO been there!
Jackie, I am not a Parent But I am a diabetic when I was Dx'ed i was 3 1/2 years old. I do not kown life before diabetes But I do kown life with diabetes. I do think that I was given diabetes to prove that I can handled haveing diabetes.
Jackie, I am not a Parent But I am a diabetic when I was Dx'ed i was 3 1/2 years old. I do not kown life before diabetes But I do kown life with diabetes. I do think that I was given diabetes to prove that I can handled haveing diabetes.
I was diagnosed at 18, and my mommy flew across the country to be with me in the hospital (even though I wasn't very sick - 17.1% A1c, but no DKA). Mommies are so important! I think it's important that you let your son know that you get frustrated with diabetes, too, though. If he sees you going through everything with a fake smile, it might make him feel like he's not supposed to feel frustrated, sad, angry, etc - and it's a frustrating, saddening, angering disease! The important part is making sure that frustration doesn't keep you from taking care of yourself (or him).
Also, celebrate the good things! There are so many times that something awesome happens (5.7 A1c!) and I don't get to share it with anyone because no one knows what that means or how hard it is to get such a good A1c. Since I was diagnosed so late, even my mommy doesn't really understand, but I wish she did, because she's the one that I want to tell me how proud she is.
Keep it up! It's great that he has taken on so much of his care, and it sounds like you're both doing a great job.
Sorry to bump this post up, but I am new and was browsing through everything. Jackie, I just wanted to say that I totally understand what you are feeling. My 2.5 yr old son was dx in March of this year. At first I felt I had to be strong because there was so much to learn and my son was so young and dependant on me. Now that we are in a routine and I'm not as stressed about everything, I think it is hitting me. It's all I think about really. I cried when I read all the posts from everyone. It's nice to know that I'm not the only one feeling this way. Bad days come and go, but at the end of the day, I look at my now 3 yr old boy and thank God that he IS healthy and vibrant and so very full of life. He puts such a smile on my face and I can't wait for the day I can say "My son USED to have Diabetes" What an awesome day it will be!
I know what you are going through. My son will be 8 this November, he was diagnosed when he was 1 1/2 years old. I know often too much of your pain and your tears you have cried. I too cry still some nights just watching him sleep and hoping someday that there could be a cure for him and the many others out there. My heart hurts trying not to worry about his future. I try so hard to control this unpredictable disease but the battle is never ending. I am saddened for these kids that have to grow up so much faster than others. Yes they say it can be manageable but it doesn't stop the uncontrolled levels, the sicknesses, the hospital visits, the Dr. appointments and the continuous worrying.
I just want you to know that we are all not alone in this battle and we need to reach out to each other and keep our supports. That is what helps us through these days.
All the best to you and your son, hope to hear from you;0)