There is so much information on diabetes out and there are so many parents who have to care for children diagnosed with Type 1 Diabetes at a young age. My guest blogger this month is a mother who had her daughter diagnosed at a young age. I am one of the few lucky ones who knows this amazing woman and was with her in spirit when they went through all this.
A little bit about us
Morrison is 4 years old, loves music and to sing, loves animals and has never met a stranger. She attends preschool part-time, and absolutely loves learning about anything and everything. She says she wants to be a “hospital girl” (doctor/nurse) or a Princess when she grows up, but hasn’t decided which (maybe both?).
I am 29 years old, hitting 30 this year, and I am a full time mom and wife, and a part time Realtor. I am married to a pretty great guy, he treats Morrison and I like royalty and works his fingers to the bone to provide for us. We have been together for 11 years and married for 4 of those.
Morrison was a planned baby, and my pregnancy and her birth were super easy, and both mostly unremarkable. My husband and I both got the flu pretty bad that winter, but I’m pretty sure everyone did that year and baby was fine throughout, albeit a little annoyed by all the coughing! Morrison Clare came into this world, quiet as a mouse, weighing a healthy 6lbs 10oz (3kg) and 20 inches(50.8cm) long, after being induced the day before and pushing for about 20 minutes, and I was up walking to the bathroom right after. Talk about a breeze!
How we got here
The day that she was diagnosed started the night before. Morrison has been sleeping 10-13 hours a night since she was about 3 months old, but she was up every hour or so with a wet diaper and said she wasn’t feeling good. The next morning I was exhausted, and she was up super early saying she had to throw up. She was kind of dry-heaving and seemed to be pretty out of breath after trying. She slept on and off that morning, and still breathing in kind of an unusual way. It wasn’t at a rapid pace and not shallow or anything, but just a little weird. I called my husband to make sure she hadn’t inhaled any water in the bath the night before, and he told me to make an appointment with her doctor just in case. I made the appointment for 2 hours later, and by the time we got there, she had to be carried in. She was in obvious respiratory distress, and we were advised to take her to the St. Vincent Peyton Manning Pediatric ER in Indianapolis right away. When we got there, her lips were grey and she was very disoriented. We had absolutely no idea what could be happening. The nurses got her into a room, hooked up to an IV, and then somehow, by the grace of God, one of the nurses leaned in close to Morrison’s face and caught a whiff of her breath, which smelled citrusy and sweet, apparently a tell-tale sign of diabetes.
The nurses checked her blood sugar on a pocket glucometer, and her blood sugar was a staggering 425mg/dl (23.5mmol/L) (normal range for a 3 year old is 100mg/dl(5.5mmol)-150mg/dl (8.3mmol)), and she was in Diabetic Ketoacidosis; meaning that there was little to no insulin in her body and her blood was producing too much acid and she was breathing rapidly because her body was trying to “blow off” the excess acid to no avail. The nurse put her arm around my shoulders and said something as simple as “your daughter is a diabetic”, and that was it. That was the big moment. I’ve always wondered what it would be like receiving some sort of earth-shattering news like that… does the dramatic music automatically start playing? Do you drop to your knees and curse the sky? When does George Clooney come into the ER and tell me it’s going to be ok, and we solve this in the following 30 minutes? Her prognosis was grim, and they were honestly not sure what the outcome would be. The next 4 days in the PICU were a blur, my head never stopped spinning and before I knew it, she was released into our care and we were left to keep her alive on our own for the rest of forever.
The following days, weeks, and months were pure hell. The first night we were home to sleep in our own beds, Morrison would cry out in her sleep all night, dreaming about the hell she endured in the hospital. I would put her to bed at night and then continue to get up and check in on her and check her blood sugar every hour, all night, every night, because I felt like she could literally pass away at any minute, and it was true, she could. It was like having a newborn baby again, but amped up to a million. It was excruciating. But in time, it did become easier to manage and more normal.
Morrison’s diagnosis of T1D completely turned our world upside down. The fear of mortality was overwhelming for me. Morrison didn’t understand why she was being tortured with needles and finger sticks, and we were all totally miserable. Counting carbs, calculating insulin doses, checking blood sugar… it was all so overwhelming. I honestly never thought life would get back to normal, but as time passed, things started to become more routine and we were actually getting the hang of it!
The emotional toll Morrison’s T1D diagnosis took on us was so immense that I have trouble explaining the weight. Almost losing your child suddenly, and seeing them in the condition that she was in, it really changes you. We are beyond blessed to have good health insurance benefits through my husband’s employer, so the financial cost was way easier on us than it is for most people. We are very, very lucky, in all senses of the word.
Type 1 Diabetes is incurable and can only be treated with insulin therapy either through injections or through the use of an insulin pump. Unlike Type 2, which can be treated and even cured with diet, exercise, and oral medications. Type 2 Diabetes means that your pancreas still functions and produces insulin, but the body does not know how to use it properly. With Type 1, the pancreas does not work at all, and does not produce insulin, so insulin must be administered manually for the rest of the patient’s life. Treatment was not available for Type 1 Diabetes until around 1921, and up to then, Type 1 Diabetes had a 0% survival rate. Yes, you read that right — ZERO PERCENT SURVIVAL RATE. Nowadays, Type 1 Diabetics live full and happy lives, and this disease is no longer a death sentence.
In the beginning, we checked her blood sugar levels every couple hours out of fear, but now that we have our routines worked out and her numbers are more well-controlled, we only check 5-6 times a day that is before breakfast, at school, sometimes after school, before dinner, before bed, and then again before I go to bed. She was terrified about having her finger pricked, she would fight and scream and it was a real nightmare. But before long, she was telling us which finger to use, and even checks her own blood sugar sometimes. She is so proud to show people how she can check it herself!
We started out using pens, but after 2 months, our insurance approved her for an insulin pump. she went from 5-6 insulin injections a day, to changing a pump once every 3 days. She still isn’t happy about putting the pumps on when it’s time, but I think it’s a pretty good trade-off! She needs a dose of insulin after every meal that contains 15 or more carbs. With the pump she uses, it is wirelessly connected to her handheld unit, so when she eats, we check her blood sugar beforehand, count the carbs she eats, and then enter the amount of carbs into her handheld and it calculates and doses for us. It has really streamlined the process!
The symptoms for high and low blood sugar are close in how they present themselves. If she’s too high or too low, there will usually be a dramatic change in mood, such as being happy and playing one minute, and then moody and upset the next. She will usually complain of a stomach ache, and become thirsty. It’s hard for little ones to tell when they’re high or low most of the time, but Morrison does really well recognizing when she needs to be checked most of the time. High blood sugar is a little bit easier to correct and slightly less dangerous on the front end, because correcting a high blood sugar just means giving a dose of insulin and rechecking in about 15 minutes. With low blood sugar, there is a more immediate urgency because at a certain lowness, she could become disoriented, pass out, or worse if it goes unchecked. Low blood sugar gets treated with sugary snacks such as Skittles, Tootsie Rolls, Fruit by the Foot, or anything that could be considered “pure sugar”, because those snacks will raise her blood sugar faster than chocolate, milk, fruit, etc. For a low blood sugar, she needs 15 carbs of sugar, and has to be rechecked 15 minutes later to make sure she is back up over 100mg/dl(5.3mmol).
I thought this was going to be the hardest part. Luckily though, we haven’t had to make really any changes. Unlike Type 2 Diabetes, Type 1 doesn’t require much in the way of changing the way you eat, especially for toddlers. The only change we HAD to make, was keeping track of the amount of carbs she takes in so that we know how much insulin she will get. For breakfast she usually has yogurt or granola bars, cereal, apple… her tastes change daily! Lunch is usually chicken nuggets and a healthy side, and then whatever we make for dinner she will usually have a version of. Snacks also vary from baby carrots, veggie straws, fruit, etc. One thing we have started doing since her diagnosis is that we have added in a bedtime snack at the end of the day. She tends to get hungry and needs a little boost at the end of the day, so we usually stick to a small plate of pepperoni, shredded cheese, veggie straws, and a pickle. Very few carbs in that plate, so she can have a good snack that doesn’t require a dose of insulin.
I think if I had to say that there was one hardest part, I would say that the hardest part is dealing with the emotional side of it. There are some days where I can’t stand to stick her finger one more time, or I can’t bear to torture her by putting a new pump on, and I just want to run away and forget about the fact that I am literally taking the place of a human organ, but it’s not that easy. A regularly-functioning pancreas doesn’t get to run away, and neither do I. She doesn’t deserve to have to go through this, but she doesn’t have a choice, and that is the hardest part. Some moms tell me “I don’t know how you do it” or “I could never do it”, and I always kind of laugh and say thanks, but the truth is, you don’t get to “not do it”. I don’t know how I do it sometimes either, but the only other option is one I don’t want to think about. Type 1 Diabetes is a life and death disease, if you give up, you’re giving up everything.
To a mother with a newly-diagnosed toddler/child
I honestly don’t know what I would say. I would probably tell them that it does, indeed, get easier. I would get so annoyed when people would say that to me in the hospital, though. That’s one of the last things you want to her when your life gets completely turned upside down, but it turned out to be true. It didn’t ever seem like things would get back to normal, but eventually T1D just became a part of our lives, and we have learned to thrive despite it. Never stop fighting the good fight, and never stop hoping for a cure!