Stacey Simms is an award-winning medical reporter. She also spent 10 years as a TV anchor in Charlotte, North Carolina, and in Syracuse and Utica, New York. But after getting to know her a little, I’d venture to guess her most challenging role in life has been as the mother of a very small child diagnosed with diabetes. (Check out her blog here.)
As a complement to this week’s guest post on parenting tweens and teens with diabetes, please join us today for Stacey’s perspective on managing diabetes from the side of her son’s crib.
A Guest Post by Stacey Simms
Last week, as I checked my five year old’s blood sugar, he looked at me and said, “I wish I didn’t have diabetes and I was like you guys.”
Me too, I thought. I wish I could hug you so hard I could mush my pancreas right into yours and we could switch. I wish for no more shots, no more finger pricks, no more “button” changes. But I know that sometimes wishes don’t come true.
“I know honey,” I said. “Sometimes I wish that too.”
“Why did G-d make me with diabetes?”
Deep breath. “I don’t know, but that’s just the way it is. And if you take care of your diabetes it won’t stop you from doing anything you want to do,” I said. Is that the right thing to say?
“Yeah, I’m the boss of my diabetes, right?”
“You bet, dude.”
Benny was diagnosed with type 1 diabetes one month before he turned two. Three years later, I’m often asked, how do you manage diabetes in someone so young? Of course, we didn’t know any other way, but it’s a challenge, to say the least. Not for wimps, and you better have a sense of humor!
Benny got into the diabetes routine before he could say it – until he was about 4, he had “di-di-betes.” The finger pricks were never a problem. He often didn’t want to stop what he was doing, but he would almost always stick out his hand. We found out he’s ambidextrous, which is helpful. We also found that he liked to see just how much blood he could squeeze out and wipe all over the floor or table after we turned away. Not so helpful.
We did have to hold him for the first two weeks of shots. Sometimes it was more of hug or a firm cuddle but sometimes it was just flat out wrestling down a crying, struggling two-year-old. That was the worst. But soon he didn’t mind and again, as long as he didn’t have to stop playing for very long, he would just hold up his arm. We got quick and discreet – I once gave him a shot while sitting in the audience at a Go Diego Go show. He didn’t want to get up and miss the show, so we didn’t.
The only way to know what a toddler will eat is to wait until he’s done, and then add up the carbs. We’ve only recently started bolusing before meals, and even then only for part of the portions. It’s always when I’m sure he’s going to eat something (birthday cake!!) that he bails halfway through.
Sometimes I’m amazed at how far we’ve come. One our first night home from the hospital I checked Benny as he slept. I couldn’t decide whether to raise 
the crib rail or stick the lancet through the slats. I’m pretty short, and I was trying hard not to wake him up! He was 225, but I didn’t want to give him a correction. I just didn’t want to give my baby a shot while he slept in his crib. I started to walk out of the room and then it hit me — diabetes wasn’t going anywhere. There was no room for magical thinking here and I needed to get it together. Snap out of it, mom and go give him that shot. So I did.
(I did all the finger pricks and shots through the slats, by the way. We were very happy when Benny moved into a bed. Blue and red sheets and blankets so the blood drops don’t show!)
I will spare you the details of checking for ketones while he was still in diapers, and of potty training with an inset. Did I mention we laugh a lot?
My husband and I told each other he was so young that diabetes would be all he’d ever know, and truly it’s such a part of his routine that he rarely questions it. Until he does, of course, and then we have conversations like the one last week.
I would love to take this all away from him and take it upon myself. I think any parent would. But that’s not how it is. It’s my job, and his dad’s, to take of him the best we can and to prepare him for the time when he’ll do it himself.
Benny will start Kindergarten this fall, getting on that bus with his big sister looking out for him. He’s checking himself and using his pump more on his own. Of course, he won’t be unsupervised – the school nurse and I are already great pals – but we do hope this will be a big step toward some independence and responsibility. Big talk, right? Come back and check on me in September – when my heart will be in my throat and my cell phone in my hand!
Thank you for sharing, Stacey. I really don’t know what else to say…
I often forgot how hard it had to be for my parents. Thank you, Stacey, for the gentle reminder and all the best for you and your son! (I was diagosed with Type 1 when I was 5, but still I don’t know a life without diabetes. Good luck!)
Well said, Stacey. I am the mom of a now 6 year old, who was diagnosed at the age of 3. I agree with everything you said, especially about having a sense of humor! I had to laugh about the birthday cake – we had an episode recently where just as I saw the pump finish delivering the breakfast bolus, my son said “my tummy doesn’t feel well!” as he ran for the bathroom. Great, now how to get him to eat 30g of carbs when he’s got a stomach bug. Or the time when he was newly diagnosed and stuck the little round lancet cover up his nose so far we couldn’t see it, and every time we told him to blow his nose, he INhaled instead of EXhaled…
I’ll be thinking of you in September when my son begins a full-day of first grade instead of half-day Kindergarten….
It is quite a job to have a baby with T1 but you really do have to laugh at lots of things. My daughter, who was dx at 20 months, just recently got a pump. She infomed the cashier at our local Walmart ” I have a tube in my butt!” She is 3 currently but she uses words like “high, low and buzzin’ (when her pump vibrates). I total understand the birthday cake ordeal. You would think that they would eat the whole piece but sometimes they just won’t. Thank you Stacey for this post…it is very helpful to read that someone else out there is/has gone thru the exact same things!
My encouragement to you . . .
I was diagnosed at 28 months, in 1959. I have lived with diabetes, then, for 56 years. I don’t remember the time when I did not take insulin. I do remember trying to run away from my mother (a registered nurse) so I would not have to have that needle (twice the size of the modern disposable syringe needle) poked into me. For those who are dealing with the situation, my parents and I found a solution: I was told I absolutely had to have the shot. My mother agreed that when the syringe was ready, we would go to the couch–me with my butt in the air, she sitting next to me. She would count backward by fives from 30. If she reached 30, she would give the shot. Or, she would give it to me when I said the code word “pumpkin”. This gave me some control over the situation, and lasted until I learned to inject myself (I usually waited to the last second, but always gave the code word). You and your child have apparently worked out a solution, but others using MDI might find this useful. Incidently, I still have a strange and strong aversion to pumpkin pie.
As someone dx’d at 30, there are so many challenges specific to children that I can’t even imagine (having the person who picks the insulin dose and the person who has to eat the food not be the same person, for example). A very nice peak into a clearly challenging situation. Sounds like you’re doing a wonderful job.
I have had diabetes since two weeks before i turned four. I may not have any memories of pre-diabetes life, and I can even begin to imagine what it’s like to not question how much the milkshake will add onto my carb count, and godspeed if there’s a cure before I’m dead, I will still probably count up the carbs in my burger and fries long after said curing. But I know that like me, Benny will grow up with something other kids sometimes never get, and that is a sense of mortality and a determination to live. He will probably have a better understanding of taking care of himself and be more determined than his peers to keep himself healthy. But godspeed on that cure so we both can decide on half or the whole slice of cake (I have a huge sweet tooth so I know what my choice would be).
Very well written…I got diagnosed type 1 at age 11, just a few months after my sister was diagnosed at age 3. My parents found it a blessing that I could help them understand what she couldn’t express. I was too caught up in my own problems with the disease to really see things from my parent’s point of view-which you’ve brought to life here. I became a parent last year to twin babies and feel like I’m beginning to understand what you are feeling and yet don’t because you are the one with the diabetic child. I think your sense of humor is priceless and I wish all the best for your little one. Keep up the great work, mom
Great post, Stacey. I can’t imagine how difficult it would be with such a young child. Diabetes is hard enough to manage when it’s happening to you, I’m sure it’s a completely different ball game when you’re trying to control it for someone else. You and Benny are both doing an awesome job though…thanks for sharing your story!
This post brought back a lot of memories. My boys were diagnosed as babies. I’m glad to be to the point that they can tell me how they feel. I think that was the worst part of it all…never knowing how they were feeling. Great blog! Thank you!
My daughter was dx at the age of 24 months…she’ll be 7 soon…
So many memories. Keep up the great work
Great blog. It’s good read that your living above diabetes.
I’m laughing and crying reading all these great comments! I was so excited about the chance to have a post here – and I’m thrilled that you’ve decided to put your two cents in. Thanks so much!
My son was diagnosed just after 2 years. He is now almost 16 years old, driving (with permit), playing football and doing great. I look back now at all the milestones he achieved (giving own injections, inserting infusion sets himself, etc.) I am so proud of him and all that he has done. I honestly believe that diabetes has made my son extremely mature, responsible, empathetic and more. Although I would trade places with him in a heartbeat, he has become an amazing young man and I have no doubt that he will achieve great things. He can handle adversity and challenges better than anyone I know, which I know will take him far in life!
I was diagnosed in my teens. My brother, two years younger, was diagnosed two months after me. Neither of my parents has diabetes. I still remember my mother’s uncontrollable sobs when she learned that my brother also had diabetes. Bless all of you Moms of Type I toddlers. You are amazing!
As a type 2, diagnosed in my late teens.I can only imagine the challenges that a parent with a diabetic child must face especially for someone so young. Hopefully the foundations you are setting up now will last a lifetime