Bonnie is the mother of a child with type 1 diabetes. She recently shared a bit about her life with me. These are her own words.
Click here to read Veronica’s story about her daughter’s type 1 diabetes “consuming” their family.
What is it like to be a parent of a child with type 1 diabetes? Wow, what a question.
It is a crazy emotional roller coaster at times. I will forever remember 12/26/13 – that is when my then five-year-old son was diagnosed with type 1 diabetes. That late afternoon I thought I was taking my baby to a sick pediatrician visit. Needless to say the doctor looked at my husband and I and told us we were to get in our car and drive straight to the children’s hospital and she would call the ER so they would know we were coming.
Instant panic set in.
I had no gas in my car (very typical for me). My baby was so tired and pale that car ride. It seemed my husband drove very slow when in reality he probably did 90 mph.
The next seventy-two hours we received a crash course into our new lives. I held my baby boy and would cry during our stay in the hospital. I asked myself why what did I do?
I cried as I was four months pregnant with another beautiful boy.
Where did I go wrong? How can I protect my next child from this horrible disease?
All questions were answered those first seventy-two hours.
I did NOTHING wrong.
If anything I’m thankful I know my boy and we caught it before his blood glucose went deadly high.
Since we left the hospital I have not slept thru the night. I’m up checking to make sure his blood sugar is good via his CGM (continuous glucose monitor) or I am poking his finger.
We are fortunate to have technology, but as many people know technology can fail us. This is the nightmare of every mom of a child with type 1 diabetes – that technology will fail in the middle of the night. This is only the beginning of a our worries.
I am that mom…
- I don’t get to be that mom that lets her son buy school lunch and not worry about what it is. I am that mom that packs the cool homemade lunch and attaches a bright colored sticky note each morning with the carb count for the nurse.
- I am that mom that is calling the school if my sons blood sugar is too low and I haven’t heard from the nurse.
- I am that mom that needs to know if the nurse is going to be out and what the procedure is going to be for the day.
- I am that mom that has the nurse and teachers cell phone numbers and vice versa.
- I am that mom that goes on every field trip that way I know my child is cared for.
- I am that mother that has become so friendly with the nurse because she is in charge of my son’s care when he is with her 180 days of the year.
- I am that mom that cringes at birthday parties when there is a piñata that is filled with candy and my son wants to be able to eat what he wants with his friends. Never mind a homemade cake. Yes, it’s very cute, but is that frosting pure sugar?
- I am that mom that is at every sports game and cheering my child on. After every cheer I pray that he doesn’t drop to the ground from a low blood sugar.
- I am the mom that cringes when my child wants a slushy from the snack shack. I offer to buy my son anything BUT the slushy in the snack shack. Bring on the tears and tantrum of hating diabetes.
- I am that mom that cries herself to sleep in fear of the future. I am that mom that prays every night for a cure so my son will not have scars all over his body from site changes or ugly finger tips from constant blood sugar pokes.
Being the mother of a child with type 1 diabetes is the worst and best thing. It has given me a reason to appreciate the little things a bit more than I did before. It has made me and my family stronger and closer than ever.
Since being diagnosed my son has been asked many times out in public about his pump or his cgm (continuous glucose monitor). On occasion and he has answered people honestly with what they are. Other times he has had a bit of an attitude with people.
I have had to explain to people that this is his forever and that pump is his pancreas so be thankful yours works correctly.
It’s not fun being the kid that everyone sees these gadgets you wear. It breaks my heart to see my son get mad that his pump was placed too low on the back of his arm and now all his peers will see his pump under the sleeve of his t-shirt.
No matter how hard I try to decorate his pumps as fun and with whatever he wants he still at times is self-conscious. How does that make me feel as a mom? I want to take it all away.
I have cried holding my son as he says how much he hates diabetes and I say the same. I even tell him how much I wish I could take it all away and give me diabetes so he didn’t have to suffer any more.
I have been called a helicopter mom. Those people that want to call me that can go right ahead. I know they don’t walk in my shoes and I wouldn’t want them to.
I know I was that uneducated person before 12/26/13. I don’t judge how others raise their children why should people judge how I care to keep my child alive? I am by no means a helicopter mom but I am a proud MOD (mom of diabetes) strong! #blakescorner #hopeforacure #typenone
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Bonnie is one of the most amazing mothers I have ever met! Blake gets his strength from her! Great job Bon!
I see myself in her post so much, but in my case it was a child who was diagnosed just after age 2 with one of the more extreme cases of asthma that her doctor had seen – that is, the 3rd doctor (the specialist) who we were only sent to because her pediatrician got tired of telling me that she was fine and that he knew best because after all he “is a doctor and the parent of an asthmatic child” and since his daughter didn’t look like mine did, I was obviously making it up and imagining things. Except I wasn’t. The specialist took one look at her and immediately sent us for a chest x-ray, she had so much fluid in her lungs that he nearly hospitalized her with pneumonia and he was furious that the pediatrician had acted the way he did. The pediatrician did NOT like the phone call he got from me, I spoke to his nurse who was so shocked that he’d treated us that way and I could hear her telling the rest of the staff what he’d said to us and what the specialist said when she hung up the phone. We have to be our children’s advocates, especially when something harmless could actually kill them. Such as when the daycare worker kept giving my daughter chocolate even though it was a huge allergy for her. Each year at school, I had to give her teachers a huge list of her allergies and then explain how serious we were about it because it is very serious. I went on all the field trips. But that’s what it took to allow her to go. She had very few sleepovers because most people refused to believe it was as bad as it was, with the exception of a fellow girl scout troop leader who was dealing with similar asthma issues with her own daughter. I was my daughter’s girl scout troop leader, I probably would have been involved with it anyway but maybe not as the leader – but that’s what it took so she could participate and be healthy. It was rough at times but we did what we had to do even though people thought we were just overprotective and she’s now 24, healthy and thriving. But she still remembers hearing that asthma is just a cough and that she was just faking it when she couldn’t finish karate class – sorry, but when you have blue lips and fingernails it’s because you are not getting enough oxygen and not because you are faking it! She remembers the times when she couldn’t breathe and told me recently that she wasn’t sure she would live a few times. That was hard to hear as her mother. She was on medication for years, she took allergy shots for years, she had a nebulizer that went everywhere with her, multiple inhalers and I think she still has a typed list of her allergies in her purse.
I cried reading this. This is everything I am. All the things I worry about. My son was diagnosed 13.01.13 I wish it had of been me instead. My heart brakes and I don’t feel like I will ever stop feeling broken for him