While many parents’ alarm clocks are set to go off at the last possible minute each morning, a different kind of alarm wakes Whitney up.…. BEEP, BEEP, BEEP. It’s 3am and she scrambles for her phone to check the alarm. Groggy and with both eyes barely even open she hops out of bed, does some mental math, and heads to the kitchen to prepare a small snack. She quietly tip-toes into her son’s room and wakes him up just for a few nibbles of peanut butter in order to regulate his blood sugar. This alarm will continue to go off several more times in the next 24 hours. This is Whitney’s normal life. Whitney is a type one diabetes mom.
A Mother’s Instinct
A week before her son’s second birthday, Porter started heavily urinating through his diapers at night time. He was also waking up multiple times in the night begging for water and chugging it down. She found herself changing sopping wet diapers every hour during the day. She tried going up a size in diapers, then to nighttime diapers, then a size bigger in nighttime diapers and he was still leaking throughout the night. What gives?
Like most moms when they don’t know what to do, Whitney turned to Google for some answers. While she was hoping for some advice about the best overnight diapers on the market, a few searches in led her to instead question whether or not her son Porter had type one diabetes.
Scared and confused with what was going on, she followed her gut instinct and decided to give her pediatrician a call. She recalls, “They told me that it did sound like he was drinking a lot of water, but some kids just drink a lot. As long as he wasn’t lethargic, they’d just wait to see him at his two year well check appointment that was already scheduled a few days later.” A small sense of relief washed over her that the doctors didn’t feel what was going on was urgent. Whitney agreed to wait a few days until his appointment.
The Diabetes Diagnosis
When the appointment finally rolled around, Whitney was eager to get some answers. After going over all of the “normal” two year old stuff-weight, height, milestones etc. she finally brought up her concerns regarding Porter’s excessive thirst and urination. The doctor suggested doing a quick urine sample instead of a blood test because, if he was diabetic, it would be way too soon for his blood to test high enough to be considered diabetic.
So she chased her two year old around the doctor’s office trying to get him to pee in a cup, but two year olds have better things to do than that. They were trying to send her home to see if she would have better luck, but her son was now completely hysterical. At that point, “I told them just go ahead and prick his finger.”
The nurse came in and gave Porter’s tiny finger a small prick, “His blood measured in the 590s. Even though I had been googling type one diabetes for a couple of weeks, I didn’t know what his blood sugar should be. The nurse looked extremely concerned and said let’s try to get another sample. And again, it was in the 590s” says Whitney.
She would later learn that this is around SIX times what a normal blood glucose level should be. “I knew at that moment that I had been right the whole time. I started crying and felt completely numb. At that point the doctor came in to confirm what I had already suspected, Porter had type one diabetes.”
Without hesitation, the Doctor sent Whitney and two year old Porter straight to the emergency room. “We ended up having to straight jacket him to a board and hold him down so they could get blood and start an IV. He was literally screaming like a demon and begging us to help him.” For the next twenty-four hours while Porter’s blood sugar was being regulated, Whitney and her husband Eric were learning all about their new reality- insulin, syringes, needles, and carb counting,
Whitney also spent lots of time discussing what to do if her son became unresponsive from a dangerous low as well as how to work a glucose monitor, the alarm discussed at the beginning of this article. The glucose monitor provides Porter’s parents with a blood glucose reading every five minutes to understand his blood sugar trend. This lifesaving device designed to alert Whitney if something is wrong is replaced every 10 days. “We use this to dose off of and know when he is going low. Alarms will go off based on our setting for high, low, how fast he’s falling, etc,” Porter will continue to use this device the rest of his life.
Her New Normal
While most parents already have enough to worry about when they open their eyes each morning ,Whitney’s days looks much different, “I have his glucose monitor set to alert me if his blood sugar is above 160 at 6am. If so, I will give him some insulin to bring the blood sugar down so we can start breakfast on the lower end of in range.” The rest of the day is spent observing Porter’s trends and keeping an eye on his levels. Porter often needs up to ten shots of insulin a day in order to maintain the proper levels.
All food now has a carb number attached to it and that number directly affects her son’s life. Snacks, breakfast, special treats, lunch, dinner-all these meals now come with strategic plans for ensuring Porter’s blood sugar stays at a certain level. Pokes, prods and pricks are now just a part of Porter’s every day routine. “Diabetes is a silent disease. No one knows that your blood sugar is high or low and you don’t feel well or that you are constantly monitoring your numbers.”
Porter is an energetic three year old who loves playing outside. How many calories he burns, how hard he plays in correlation to what he is eating all affect his blood sugar throughout the day. Each and everyday is completely different, and his blood sugar dictates everything.
There is No Such Thing As Done for the Day
After a long day of watching what Porter eats, insulin shots, doing laundry, monitoring blood sugar, administering carefully planned snacks, doing dishes, playing at the park, brushing teeth, reading books, picking up toys, cooking dinner and all of the other mom stuff that goes along with the day, Whitney doesn’t get to just sit back and relax once her son goes to sleep.
Porter’s glucose monitor never stops running. “Once he goes to bed at night, we continue to watch his levels while we are “relaxing”. Sometimes a late dinner, high fat/protein meal, too much dinner insulin, and a million other things can affect his numbers. There is no “phew we are done for the day” with type one diabetes. I just continue to monitor it while I’m awake and make adjustments. That might mean we have to go in and wake him up to have a little snack or give a shot. Then throughout the night, I rely on his monitor to alert me if he goes high/low and then I’ll get up and make whatever adjustment is needed.”
What Do You Wish People Knew About Diabetes?
“I think there are a lot of misconceptions about type one diabetes. No, he didn’t eat too much sugar and NOW just has diabetes. No, he won’t just grow out of this. The only thing my kid can’t do is fly a commercial plane or be in the army and the only thing he can’t eat is poison!
I also wish people understood that this requires CONSTANT around the clock monitoring if you want to keep your numbers where they need to be. I think a lot of people see type one diabetes as the “easy” diabetes, because all he has to do is take a couple of shots but that is the old way of managing this disease. We have wonderful technology, but with that comes knowledge. If you can see your blood glucose every five minutes, you realize there’s a lot of work to be done to stay healthy.”
What is the biggest Challenge For You As A Mom?
“I know some people would say I should be proud of Porter for wanting to learn more about diabetes, and I AM, but it breaks my heart too. Porter knows the names of his insulins, he can push the button to administer a shot, prick his finger, and is starting to ask what his number is. These are all wonderful things that are steps to his self management but it’s not anything a 3 year old should be learning.
I once heard him try to explain what his continuous glucose monitor was to a little boy who asked about it on the playground. Porter was probably 2.5, so his explanation wasn’t something this other little boy understood. They were giggling as Porter was trying to get through to him that we did not cut him or shoot him to get it in, but I understood him, and he explained it right. That moment was funny and I was proud of him for getting practice answering a question he’ll get asked a million times, but it was such a sad moment to watch.”
As Long As She’s Needed
When Porter was diagnosed with diabetes, so was Whitney. This is a disease Porter will have for the rest of his life and something Whitney will continue to assist with for many, many years to come. “It will be weird one day when Porter leaves the house and tells me to stop monitoring his numbers,” she continued,”This is the card we were dealt, and I am honored to function as a pancreas as long as Porter needs us to.”
Quick Facts About Diabetes
- 1.25 million Americans have this disorder
- Type 1 diabetes accounts for 5% of all diagnosed diabetes cases.
- 40,000 people receive a type 1 diagnosis in the US each year
- The cause is unknown
- There is no cure for diabetes
- $327 Billion is spent on diabetes every year
- 5 Million people in the US are expected to have T1D by 2050
- An average 1 year supply (36 vials) costs $13,500