I recently asked parents of children with type 1 diabetes what their life is like. Here Veronica, mother of a 10-year-old daughter who has type 1 diabetes, tells her story. These are Veronica’s own words.
In a word, it is “all-consuming.” There is not a moment in the day (or night for that matter) that it’s not in the back of my mind.
Like any parent, my responsibility is raising a happy, healthy, kind, child to become a contributing member of society. However, we have to work a lot harder at the “happy, healthy” part than most.
We don’t want type 1 diabetes to define my daughter – but it is a big piece of who she is and the choices she has to make.
As a parent, being able to plan and be proactive is key. This is something as simple as, it is the teacher’s birthday on Friday. The other room mother is bringing a fancy cake for the teacher to take home and cookies for the kids to celebrate with her in class before lunch.
I arrange my day to “volunteer” and we estimate the carb count on the cookies.
She wants 3, but we negotiate 2.
Three cookies would be more carbs than her entire lunch, and since it’s sugar it could give her a headache or tummy ache afterwards. We estimate the two cookies to be 30 carbs total, which is 3 units of insulin.
I stealthily give her a shot in the arm, so she doesn’t feel funny in front of her classmates.
An hour later, when she goes to the nurse before lunch, to test her blood glucose by pricking her finger, and get her shot for her 35 carb (carefully packed and measured each day) lunch (consisting of a turkey and cheese sandwich, 10 Pringles, half an apple and water), we will see how far off we were on those cookies.
It was a good guess – she’s 135 (her range is 80-140, a non-diabetice would be 70-100).
I am constantly scouring the Internet for recipes, supplements, and essential oils – anything to help keep her healthy. I have stacks of books and I’m familiar with half a dozen different theories of the cause of type 1.
I try to minimize my son’s chances of getting t1d with this knowledge in hand.
We do NAET therapy once a week (to remove allergens and reset the body), in case we can locate the “thorn” that could have triggered the condition.
I am full of guilt when I read about moms changing their entire family over to raw, green diets or low carb diets to minimize the insulin needed and maintain a steady Blood Glucose.
As strict as we try to be, I still want her to be a kid – eat pizza and cake a b-day party. I pray she won’t rebel when she is older.
Yesterday I had a mini breakdown.
We recently got a CGM (Dexcom continuous glucose meter), which attaches to her skin through a tiny needle and measures her BG every 5 minutes and via blue tooth sends it to my phone. It is amazing technology. I used to set the alarm for midnight and 3 a.m. every night, stumble across the house, prick her finger and check her BG.
Now I just check my phone on the night table – I have not slept this well in 3 years!
However, the flip side is, I feel like we were diagnosed all over again – it is all new.
The other day my husband called in panic…she was 256 after lunch. What the cgm has given us the opportunity to do, is to see what her BG is between and after meals…I had no idea she was going that high between meals – it was a real blow, I thought we were managing it better than that.
So I find myself talking the husband off the ledge…it’s been almost 2 hours after lunch, she was high right before lunch, I’m guessing she had a 5 unit shot. Give her a few more minutes – she will be fine.
If we over correct and give too much insulin, she could go low.
She usually feels a low coming on, but if it happens too fast, she could pass out and require a shot of glucagon – I don’t plan to ever have to use it, but it could save her life one day, if she dropped too fast.
I want to save her this embarrassment if I can.
Finally, after 3 years of t1d, at a time when I expected to be back at work, I find myself volunteering for JDRF. I travel to local schools and share symptoms and take the kids through the Kids Walk Fundraising program (they raise money for making type one, type none and do a walk in school).
In fact, this weekend, I will be attending a fundraising gala, that I have been helping to plan for the last 5 months. Kat will be an Ambassador for the event.
So all-consuming sounds about right when it comes to parenting a child with type 1 diabetes.
Thank you for sharing, Veronica! Click here to learn more about the symptoms of type 1 diabetes, which is often misdiagnosed as the flu (and can be a deadly mistake).
This is Bonnie’s story about being a type 1 diabetes mom is not the same as being a helicopter mom.
Thank you for letting our voices be heard. Type 1 incidence is rising dramatically and though we are shouting for awareness of signs and symptoms, no one is hearing the alarm.
Such a relatable post, thank you for sharing your story.
What an accurate account of us living with kids with type 1. It’s hard to understand what we do all day and night and especially how we have it in the back of our minds all the time. We wonder what their blood sugars are all the time and we worry about the highs and lows all the time, especially while at school or away from us, during parties or other special events, during sports games, during play times. It is mentally exhausting and there is no break. It is very difficult for people to understand what we do which is why we cling to the support groups and instantly bond with other type 1 parents because they get it. Thanks for sharing this post!
Hi my son is newly diagnosed,two weeks ago, with type 1, he is 14. I feel overwhelmed with guilt and wonder if I will ever get to grips with this. He has cried a few times in frustration and anger, he is amazing with his finger pricks and injections. I have a very busy family life with older kids, husband and about to start a new job working diferent shift patterns. I am worried I won’t cope and take care of him properly. This may sound silly but I feel so much presure and worry for my son, I hide my tears and try to be positive and tell my son how brave and amazing he has taken to his new routine. His nurses are wonderful and very supportive but I feel so alone right now.
I’m going to reach out to a mom I think can help you. Hang in there!
I hope I did this right. I posted my email so she can contact me, please let her know. Thank you so much for all you do for our community!
My son was also 14 at diagnosis. I know exactly how you feel.
My email is cstevens338@gmail.com. I am here for you.
T1D is so unbelievably overwhelmingly at first. I promise it gets easier to manage.
Please contact me.
Also stop what you are doing and look up Type1Day1 on YouTube.
You and your son are not alone.
I completely understand! My daughter was diagnosed roughly 2 months ago and everything has been so hard. I tell her to be strong when I’m dying inside. Sometimes I see her crying or sad breaks my heart 🙁
Ok, let me start out with the fact that I am a 13 year old diabetic and I was diagnosed 5 almost 6 years ago. When I read things like this it kind of makes me mad. It’s nice that all of you parents are out their sharing your story and stuff but I’m going to be honest with all of you. Being the parent is one thing being the person with diabetes is the next. Have you ever tried just talking to your kid before posting stuff. They might not understand the whole posting thing but As a diabetic myself I hate it when I see that parents are taking their kid to some type of therapy like it’s going to help. Being a teenager and fighting diabetes sucks but I don’t want to talk to an old person that has never actually gone through diabetes. Having diabetes means you have a higher risk of being depressed and having constant mood swings. A therapist is not going to help. Let you kid have a normal kid life make sure you check in with them but don’t pester them 24/7. I’m not going to lie as a teen I have rebelled and I hit a point where I didn’t want to have anything to do with diabetes and I was placed in a hospital for a week because of DKA. It’s normal for a kid to throw tantrums and give up. Just remember this. Please please please!
Belle, Thank you for bringing your perspective to everyone’s attention. My daughter is 8 yrs old and diagnosed in June 2017. We as parents were crushed. We realized that she will still be able to do everything she wants but things will be slightly different. It has been hard on all of us, of course, especially her. She has her days where she gets sad or mad. I have those days, too. We talk to her all of the time about everything. Still, there are days when the guilt of it all consume us as parents. Our daughter’s pediatrician had suggested counseling for all of us when she was dx. I wish we had gone as a family. It’s not going to do anything for the diabetes but it could have helped us with coping skills. We never dreamed anything like this would happen and our daughter had no symptoms. This came out of left field completely with no family history. Anywho, a therapist can help with coping skills and sometimes it can be someone just to talk to about everything. Might even help to talk about your own parents if they are pestering you. I’m actually crying right now as I’m typing this post. I wish I could take the diabetes from her and give it to myself. As the parent, it kills you inside. Did you the parent do something wrong? Are you doing things right? Are the calculations correct? Waking up in the middle of the night to check your child just because you’re worried. It sucks for everyone but you, the parent, have to put your best face forward and be strong for your child. And sometimes, that is just hard. Anyway, I hope you have peace & happiness and wish the best for you on your life’s journey.
My daughter is two years and 5 months old and she was diagnosed with T1D 2 months ago, it has left me completely shattered and broken, there are days im positive and then there are days where im crying all day out of worry and constantly thinking about how she will cope when she goes to school and what measures i need to take to manage it well.
I’m going to see if I can find some moms for you to connect with.
I am a mother of 12 yrs old boy with Type 1 DM. He was diagnosed 4 yrs back. Initially I took all the responsibility in managing his DM, but as he grow up he started participating which was perfect. Recently he is being so rebellious and doesn’t want his condition to have a big part in his life. He misses his insulin, doesn’t want to watch his meal or measure his BS.
If there are mothers who had passes this phase their disease would tell me what I should do.
Medi
I will send an email out and see if one of the moms I connected with can help you.
Thank you for sharing. My 7 year old daughter was just diagnosed 3 weeks ago. It is a very overwhelming and scaring thing. I am a hovering mother now. I never used to be. I know she’s in good hands with her school because she isn’t the first. What I’m most scared about is if she become sick with a cold or stomach bug. We are doing a good job keeping it were it needs to be. Her doctors at Joslin are doing a great job with her insulin figurations. Thank you again