T1D: A Parent's Perspective

I’d like to think that we are (or were) a typical family.  My husband and I met in college, married and while working towards careers, began our family.  We have three children, Laine, Jack and Maggie. 

On February 28, 2010 our son was diagnosed with type 1 diabetes.  He was 11 months old, and because less than 1% of children under the age of one years old are diagnosed with diabetes, Jack’s symptoms had been diagnosed as “colic”, “reflux” and “ear infections”.  He had become inconsolable and had lost weight.  The evening before Jack was admitted into the hospital, he had begun rapid, shallow breathing and was lethargic.  We took him to the hospital where we were told that Jack had “just a cold” and sent home.  So… if you can image… I am pregnant, have a toddler and have a very sick baby on my hands.  At this point, the “mom” in me says that Jack may not make it through the night.  So we make a return trip to the hospital and pretty much demand that they admit Jack. 

By the time Jack was admitted, he was severely dehydrated, which complicated the blood work need to be done.  Finally, they did a simple finger stick on Jack and with a blood sugar level of 921, Jack was diagnosed as a type 1 diabetic.  Before Jack could be transported, he entered into a coma where he remained for four days.  Because Jack needed a central line to stabilize and hydrate him, he developed a blood clot in his leg (this would later require blood thinner shots for 4 months). 

Jack woke up on my 30th birthday with a smile, reaching for me… and I will never in my life receive a better gift.

We spent 7 days in the hospital learning how to take care of a child with type 1 diabetes.  How do you figure out the carb count of formula when it is not listed on the back of the can?  How do you give a shot to a toddler?  Not once but three to four times a day?  How will we know if he has a low blood sugar?  At one, his vocabulary was very limited. 

We learned… because our job as Jack’s parents is to help him grow and thrive.  At 15 months old, Jack went on an insulin pump.  It allows him a little more freedom because it give him insulin on a regular basis and then we can program additional insulin to cover any carbs he may eat.  At three Jack understands about “sugar”, he will ask “good choice for me?” when wondering if he can eat something or not.  Jack tolerates the 10 – 12 finger sticks per day to check his blood sugar, and the changing out of his pump site every three days. 

Lately, we added a Continuous Glucose Monitor (a CGM) to Jack.  This is a device that reads Jack’s blood sugar every minute and sends that reading to yet another device.  This is Jack’s shark-o-meter.  Jack loves sharks… so “shark-o-meter” it is.  The CGM will sound an alarm if Jack’s blood sugar falls below a certain number, raises above a certain number or begins falling to raising too fast.  It’s not perfect, blood finger testing is more accurate as of now, but it is helpful in letting us know what is going on in Jack’s body, since he is still too little to tell us. 

I am hopeful that as Jack grows, the technology to treat Jack will only get better.  I look at my little boy who at three knows not only his mommy and daddy’s name and cell phone numbers, but also knows to tell that he has diabetes, and I hope that one day, he will be cured of having type 1 diabetes. 

In the quiet of the night, generally after I’ve made a trip to Jack’s room to test his blood sugar and make sure that he will “make it through” the night, I worry.  I worry about when I have to send him off to kindergarten, or on a bus.  I worry about him driving a car, going away to college, and being able to eat a whole piece of cake on his wedding day.  I worry that my Jack will live his entire life without ever knowing what “healthy” really feels like.  That he may never know what it is like to not have to worry about your blood sugar.

It helps to know that JDRF is working on not only a cure for type 1 diabetes, but also preventing and treating this disease.  They are working hard for Jack and for all of those living with type 1 diabetes. 

Again, thank you for allowing me to share Jack’s story with you.  And thank you for supporting Lincoln Electric and JDRF.