Hi, my 5yo daughter was diagnosed November 2014. I feel drained and exhausted, can’t seem to wake up from this horrible nightmare. This is NOT ok, diabetes is not ok. I don’t understand how people can be so positive about it. It’s changed our lives completely.
It gets better. I promise it does. You are correct, though, diabetes is not ok, and it does change your life forever. We are positive about it because our 6 year old watches our every move and takes her cues from us. You are still in that initial stage of shock and coming to terms with all this, and I know how you feel. The best advice I can give you is to immerse yourself in the positive aspects of the T1d community. Volunteer with JDRF or another local organization. Join a local support group, or create one. Get to know other parents and PWD. Get some counseling if you feel you need it. Go to church if you’re so inclined. Start looking into all the amazing technology out there like pumps, CGMs, and remote monitoring, all of which make sleep possible and help lower the stress level. Hang in there. I know how hard it feels and how dark your mind can get, but know that there are millions out here dealing with it just like you and that you’re not alone. We just had our daughter’s three year “diaversary” and we never could have imagined that we’d have all this technology and all this support. You can do it, and we’re always here for you when you feel like you can’t. Keep your head up. God bless and keep you.
I can totally relate. My son 14 month old son was diagnosed last week. I feel so incredibly overwhelmed with everything and really just want a break from this. We are only a week in, but I’m trying to stay positive for my husband and son’s sake, but it’s getting hard.
I’ll echo the comments above and I know where you’re coming from. Our daughter (now 12) was diagnosed at age 4. We didn’t know the first thing about diabetes and were told by the doctor that our daughter could live a perfectly normal life and that we may likely see a cure in her lifetime. We were also told by other parents of T1 children that it gets better. I didn’t believe a word of it and no one could convince me otherwise. No one here will probably convince you either until you experience it. I will say that attending our local support group was the biggest part of changing my outlook. We also began celebrating our return to normalcy or our “new normal”. Our first trip to a restaurant where we didn’t know the carb count of the food. Me not having to get jabbed with a sympathy needle for each injection (that lasted about 30 days). Our daughter taking over finger pricks. Swimming, soccer, birthday parties, sleepovers, etc. None of this happened overnight, but rather slowly, gradually over time. Good luck and feel free to respond with questions, you’ll find a wealth of knowledge and support on this site.
I’m so sorry that this happened to your daughter, and I know it has laid a heavy burden on you. I have had type 1 for 14 years. I basically went through the grief cycle. At first I was in total denial. I even went to a holistic healer willing to try anything and prove to my doctor that this couldn’t have happened to me. Then I realized it in fact did and I got very angry that I had to deal with it. I then began bargaining with God. “If you’ll take away this disease I will …” I think looking back on it I was really depressed the whole time. I had little kids to take care of so I tried to hide all of this. I was diagnosed when I was 23. One day further down the road I realized I was actually feeling like I was living a normal life. It just sort of gradually happened. I have a life to live and I am no quitter. This is my one life and this is the hand I’ve been dealt. I have my bad days, but I basically realized that this is doable and I want to be happy! You will make it through this. Keep the faith and know that one day you will be amazed at the strength and perserverance of your daughter. Please ask anything you have questions about. I have only recently joined this group. I wish I would have had this community when it first began for me. Please remember to take time for you. I know that can be hard, but your own health and well-being is just as important! Diabetes affects everyone involved.
As difficult as it is to fathom, you will survive and things will grow easier. My 8 year old was diagnosed over 2 years ago. We were numb in the beginning, going through the motions, attempting to create a sense of normalcy. You will adapt, your child will adapt. Diabetes is not okay, but for the sake of our children we have to be strong. I still break down, but do so privately. As the days go by, things will become easier. As sad as it may be, diabetes becomes your new normal. Please know, you and your child can live and thrive with T1D.
Best wishes.
Hello everybody, my name is Katie. My son was diagnosed when he was 2. He is 2 and half now .
We are having a very hard time, especially at night and late afternoons. I don,t know how others can copy with this situation, we are having a very difficult time.
Does not help that we are living in a country where one can get almost nothing, very little help.
I found out about this site from a doctor from the USA, who is working as a volunteer in our village.
If anybody know how to get a used Dexcom or any other device which works with sensor, please let us know.
We are looking to buy new, used in as long as works. It would be a big help.
It is so wonderful that this site exist, at least I can read, get connected to others with similar problems.
Reading your notes, advices, gives me hope, faith, keeps me going.
Thank you so much for all of you.
Sincerely, Katie
I’m sorry Katie. You are so right that “diabetes is not OK”. I understand that people want to have hope and try to be positive, but it takes a lot of support to work through this situation, and just plain endurance. It’s true that it will get better as she gets older and can do more stuff for herself. She’ll probably be able to check her own BG by age 5 or 6, and will have a better sense of when she’s “feeling funny”. I do get concerned for parents that hold out hope for a cure, not that we want to squash that hope, but the reality is that a cure has been touted as being “right around the corner” for the last 50 years at least. Your daughter will likely have this for the rest of her life, and you need to plan accordingly. We don’t even know what causes it yet. So try to find comfort in the fact that as she gets older, she will be able to take on more responsibility, and it will become more routine as well. She will learn how to calculate carbs, figure out her boluses, manage her BG’s, and make adjustments to her regimen. In the meantime, try to find a local T1 parents group. I live in small AZ city, and we have one through Facebook that arranges quarterly picnics so parents can get together and share experiences. I don’t have kids and I’m the T1, but they invited me so parents can see someone who has lived with it for decades and is still doing OK. Hang in there!
I was diagnosed when I was 14 months old. Just know that diabetes will not ruin their childhood and they can lead normal lives. I don’t have bad memories of diabetes when I was very little. It was normal to me and I still went to sleep overs, played sports, and bought lunch in my school cafeteria. I’m now 34, married, and have a baby. As hard as I’m sure it is now, diabetes doesn’t have to stop them from anything in life.
Hello!! I know exactly how you feel. It is exhausting and very draining. Like the others have said…it will get better. It becomes your new routine. My son was diagnosed sept '12 and he’s 15 now. I felt completely devastated initially and gave up my full time job. Im glad I did as I needed to devote some time to my son and my family with no work distractions. As devastated as I was , , I was also very positive and kept saying to myself “we can do this” its just gonna take some time to get used to these new habbits. I havent focussed on why has this happened but rather this has happened whats the best way to deal with it. My son went to football training 3 days after we left hospital which our diabetic team said was fine and he hasnt stopped doing anything that he did before. I hope something of what I have said has been helpful to u. Best wishes 
My son (13 Years Old) was diagnosed 1 month ago. Like you, I am exhausted! I have found some peace from a local support group of other Moms in the same situation. The only thing I have done different from them was after he missed his 3rd week of school, I decided to home school him the rest of 7th grade. This has relieved stress from him and his BG #s are somewhat steadier. While he was at school, the 4 days the doctors allowed him to go, they called me 3 to 4 times each day because of his #s. It was crazy for him and made me a nervous wreck.
He is having highs during the day in the low 300s and 90 minutes later he will drop to the 50s. The doctors adjust his dosages every couple of days. My son is an athlete and exercise really messes with his levels so we are working on “figuring” that out. With that being said. One of the Moms at the support group told me that she beat herself up for 2 years reading and trying to analyze the numbers. She said, forget them! There is no rhyme or reason to them. Treat for the Highs, Treat for the Lows, and praise the Lord when things are where they are supposed to be. There is nothing that any of us can do to control those numbers - if there was, someone, somewhere would be a billionaire.
After I digested her comments, I felt my stress level lift. Granted, I still have my moments but, I seem to be having less of them and, I’m trying to let my son live as normal of a life as he can right now. I know things will get easier and yes, Diabetes suck but we are doing everything we can to make the best of it. It helps that my son has such a positive attitude about it. He is officially, my Hero!
Hang in there… I know I’m hanging on by the tips of my fingers but we will all make it. Find a support group or just another Mom that knows what you are going through. We are all here for each other. Hugs!!!
Our six year old daughter was also diagnosed a year ago. We find that the diabetes is not overly difficult to manage but I really think we have been in shock survival mode this whole time. As her mom, I am not able to cope with the stress because my mind pushes it to the subconscious.
I am currently being treated by a psychologist for conversion disorder, which causes me to be extremely weak and have several seizures a day. It is similar to PTSD but with physical symptoms that are uncontrollable.
Having said all this, my advice to you is to feel the feelings. Feel the grief, cry the tears, yell when you’re alone. Don’t bottle it up. If I could access how I really feel about T1, I would. But somehow my mind is trying to protect me against the extreme feelings that should come along with T1.
You can imagine how much harder this has made things for my husband and our two year old son. I cannot drive, cook, or ever be alone with the children. Even so, there is still beauty. And I am thankful for the things I can do. Someday, I hope to sign in here and pour out my feelings of fear and doubt.
I am so sorry to hear about how T1D has impacted you personally. Our 8 year old was diagnosed 2.5 years ago. The first year is survival mode, and at times I still feel numb from it. Thank you for your honesty with how the disease has impacted you, the 30 pounds I have gained is nothing in comparison to what you are going through. There is no rhyme or reason as to how T1D impacts a family. My thoughts are with you.
I’m a T1D who is also the parent of a T1D. This isn’t what any of us would have chosen for ourselves or our child, but don’t think for a minute that you and your child can never have a “normal” life. I’m a nurse on a busy med-surg floor, I’ve done shift work, I quilt, I drive, I babysit my grandchildren. I’m happy. My son is now 19. He played tennis through high school, drives, holds down a full time job, has a girlfriend and has a great sense of humor about his diabetes. We have A1C contests–loser pays the winner $20.00. Both of us have A1Cs under 7. I’ve always tried to model good management principles but I don’t preach to him. He’s allowed to make some stupid choices and learn from them. Eventually managing your diabetes becomes 2nd nature-- it just feels normal. If you add up all the time it takes me to manage my diabetes, it’s probably less than 30 minutes a day total. The rest of the time I just live my life. Of course I wish neither of us was diabetic but as a nurse I’ve seen children diagnosed with cancer, with cystic fibrosis, with muscular dystrophy. We can’t cure T1D but we can manage it so that we can live a long relatively healthy life. Figure out what works for you and your child and, for heaven’s sake, don’t stop enjoying your life and let her do the same.
I completely understand your feelings as well. My son was dx at 14 months in July of 2014 so we are 8 months in. Yes we have learned tons but it is still so hard. I sit and wonder sometimes what I would even be doing if he hadn’t been dx with diabetes. I feel like that was a different life sometimes because all I EVER think about now is diabetes. I go through all those stages of grief still sometimes. I do have 6 kids so I just pray that I’m not completely forgetting about the other 5. I would love to go through this with you. It really helps sometimes to be able to talk to someone who knows what you are feeling. I try so hard to be positive but sometimes I just allow myself to feel sad, angry… I think that is ok. I also try to remember, it is my son that has diabetes not me and so if I can teach him the right way to handle it it will be easier for him someday!! My heart is with you! Message me anytime.
Renee
I am desperately looking for Dexcom G4 for my child. It is not available in my country. I have contacted several Diabetic centers in the world, but they do not accept the prescription and diagnosis from another country.
I would like to buy, a used one, Anyone knows where to go, where to look?
Thank you for your help in this matter.
Katie
I am desperately looking for Dexcom G 4 for my child. It is not available in my country. I have contacted several Diabetic center in the world, but they do not accept the prescription and diagnosis from another country.
I would like to buy, a used one, Anyone knows where to go, where to look?
Thank you for your help in this matter.
Katie
My 7 year old son was diagnosed less than a week ago. I am so overwhelmed and filled with worry! It is so hard to let him go outside and be a boy and wonder if his blood sugar is going to drop. Am I going to have to quit my job? Am I asking to much of the sitter. So many never ending questions. Will this ever get any easier and not dominate my every thought?
Hi Oliver,
I am so sorry to hear about your sons diagnosis. It is so sad to hear of any kid having this horrible disease. From our experiences this is the hardest thing we have ever dealt with. I’m pretty sure we go through all the stages of grief. At this point I even get stuck in a few stages Or at the very least go back to some. It has been 8 months since our son was diagnosed. so at this point I can say we have gotten more knowledgeable so that helps us to care for him better and more confidently. There are still not many people we trust completely to watch him in our absence. We are lucky that I’m not working so I can stay at home with him. But I dont ever think I will say it is easy. like you this dominates my every thought asleep and awake. our son is now 22 months. we have 6 kids. Other than the kids, Some days I wonder what I would be thinking about if this didnt happen. I think the best thing you can do is keep a positive attitude and remember your son needs you to teach him how to live with this. Knowledge helps you become stronger. It feels as though no one understands your feelings sometimes which is one reason I wanted to be part of this group. I still sit and cry sometimes so i know i need to find some coping strategies but its nice to relate to others with the same issues. Take care and feel free to send me any message anytime.
I feel ya on March 20th of this month my 6yo son was diagnosed with it and it’s just not fair.