“Child first, Diabetes second”
My youngest son was diagnosed with Type One Diabetes on September 26, 2018. I know it’s probably pretty obvious but taking care of a child with a chronic life-threatening disease is not an easy road. My son was 12 years old when diagnosed with this disease, but some are just babies when the diagnosis comes.
When our kids are born we have so many dreams for them. We want their lives to be better than our own, we want them to succeed and be happy. And most of all we want to protect them.
As they grow we realize that we really don’t have any control over these things. As a parent you can only do your best to support and love your child.
Then our whole world shifted with a simple diagnosis. I knew immediately that my son’s life was not going to be easy and that he would have to work harder and smarter to stay healthy.
I didn’t know anything about diabetes back in 2018, but now I can talk about beta cells and the latest in diabetes care technology. My oldest son was inspired to pursue Bioengineering to help his brother.
It changed all of us.
Day to Day
T1D is a tough disease to explain to people because unless you have direct contact with someone who has it no one really understands it. I am still shocked by the lack of knowledge even in the medical field. And if doctors and nurses don’t understand, how can I expect others to?
Basically, my son has to account for everything he eats. EVERYTHING.
This means carb counting even the jellybean he puts in his mouth. There are amazing apps to help, but at the beginning we were weighing everything on our new scale. We were reading labels closely and using calculators. As time has passed my son has become very talented in estimating carbs. It’s rather amazing actually. We have also never restricted carbs, just calculated what he ate.
Photo - Nicholas does volunteer work with JDRF
Prior to his insulin pump and continual glucose monitor (CGM), he would have to prick his finger for a glucose read (just like at the doctor’s office) multiple times a day and then we would decide if we needed to treat with insulin for a high or give him food for a low. So many finger pricks for months.
Then there were the needles. I hate needles. They have always freaked me out. But it is amazing what you can do when your child needs insulin to live. I became an expert at giving needles. People have actually said to me, “I don’t know how you do that, I couldn’t”. Really? You can do anything if you have to, especially for your child.
We would ask Nicholas if something was “shot-worthy” because he had to give himself a shot of insulin before eating anything. I can promise you anything sweet was “shot-worthy”. It was a family inside-joke. But boy, I hated seeing those needles.
He would have one shot before every meal, a shot for any snack over 15 carbs and then a long-lasting insulin shot before bed. Up to 6 or 7 a day sometimes.
We carry his diabetes bag everywhere we go. We’ve been through a number of bags as he’s gotten older, but basically, we have to carry a “finger pricker”, alcohol wipes, glucose tablets, Glucagon, and insulin with us when we leave the house for any time period. N is good at carrying his own food and there are gummies and granola bars everywhere- don’t get me started on all the wrappers! I don’t go anywhere without food.
A few months after Nicholas was diagnosed we went hiking and forgot to bring snacks. About half-way through the hike he felt poorly and we did a glucose read – he was in the 40’s which is dangerously low. We were 1 mile from the car and didn’t know what to do. Thankfully, N’s stepbrother was able to run back to the car to get snacks and ran back while N sat on a rock. It was a scary experience and one we have not repeated. We always bring snacks. Everywhere.
One of the hardest adjustments has been the loss of spontaneity. My son can’t just get an ice cream cone from the ice cream truck or eat a cupcake for a class party. Everything has to be accounted for and calculated and insulin has to be administered. This loss of simple pleasures was one of the most devastating things to me as a parent.
We just always have to be prepared
Nighttime
Nights can be tough, especially pre-CGM. T1D’s tend to have blood sugar drops in the night. Not sure why, just something to deal with.
Pre-CGM (and for all those who don’t have them), this means setting an alarm for the middle of the night to get up and prick my son’s finger to check his blood sugar. If his blood sugar is way high (think over 250), he may get another shot. If he’s low he gets food. We keep snacks in his room next to his bed. Gummies are a go-to if he’s awake, but he’s hard to wake him up even at 15, so we keep cotton candy in his room because it melts quickly. Nothing like cotton candy at 3 am!
Even with the CGM we are still often up at night. Now we are awoken by the beeping of the CGM – 2 beeps for a BG over 250 for an hour, 3 beeps for under 70 and 4 beeps for under 50. The 4 beeps get me jumping out of bed and moving down the hall. I’m terrified of a seizure.
Sports
My son is very active and has done remarkably well handling his diabetes.
He knows he has to be very careful and again always carry snacks with him. But there have been times he’s been on long runs for track and has already eaten his food and is still going low. His friends all know and help him out when needed. I’m thankful he has never been embarrassed about telling people about his diabetes.
Photo from a 5 mile trail run
There have been times he hasn’t been able to play or has been pulled out of soccer games because he feels low. His frustration at these times is palpable, but he shoves in some glucose tablets or gummies, waits until he feels better and asks to go in again. His coaches have been very supportive and have even carried snacks for him.
It took him some time to figure out the difference between a sugar low and the adrenaline nerves you get at the beginning of a race. He’s still not sure sometimes which has led to him wanting to eat right before an event just to be safe. I guess they must feel the same to him.
Nicholas never blames his performance on his diabetes, but I can see in his face sometimes that his road has so many extra steps.
The miracle of the CGM and insulin pump
Picture is a Dexcom read on my phone
These have been game-changers for us in our day to day life.
There are so many commercials now for CGM’s that most people have heard of them (love Nick Jonas!), but here’s a quick tutorial. These attach to your arm/stomach/lower back/leg (someplace with a little fat) by adhesive. When they are attached a tiny cannula is injected into your skin that by some miracle of science can read your blood sugar. This needs to be changed every 10 days.
The Dexcom CGM we use gives us a pretty accurate reading every 5 minutes of my son’s blood sugar. This is amazing! Before we were flying blind most of the time, until we pricked his finger. Now we know all the time. Even better, I can watch his blood sugar via an app on my phone. I have laid in bed many nights watching my Dexcom app to make sure his numbers go back up before I can close my eyes again.
I love science.
The insulin pump is also an amazing piece of equipment (have I said I love science??). We picked one without tubes so there is nothing hanging off of it, but some prefer the ones with tubes - to each his own. My son injects his insulin into the pump and attaches the pump to his skin basically the same way the CGM attaches. He can then control with his phone his injections of insulin. So much better than all the needles. This needs to be changed every 3 days.
There are downsides of course. At all times, my son has these two medical devices attached to his body. If he doesn’t put one back on, we are right back to shots and finger pricking. This is tough. He is already developing some scar tissue on his belly at 15 years old, so we have to be more cognizant of moving the pump around more. And there is SO MUCH medical waste that goes along with these devices.
As much as I am thankful for these wonderful devices, I hate that my son has to rely on them and that they are damaging his body.
And I am very aware that not everyone in the T1D community can afford these devices or even insulin. This is a serious issue -it is amazing to me in this country that some people have to ration insulin because they can’t afford something they can’t live without. We should all be shocked by this.
Mental Health
We are a pretty sarcastic family and find humor a good release.
My older son’s common retort to his brother is “at least I have a working pancreas”. Nicholas jokes about it too which I think helps him from taking everything too seriously.
I know this does not work for everyone. I read on FB pages how insulted and angry diabetes jokes make some people. I just don’t feel that way, too many other things to worry about from my perspective.
Overall Nicholas has handled his disease so well. But he has his days and his frustrations and he always will.
He is such a tough, easy kid it breaks my heart to see when diabetes pushes him too far. Those days where we can’t get his sugars down no matter how much insulin we give him and no matter how many stairs he climbs or jumping jacks he does (exercise helps bring it down). Or when his sugars are skating low and we can only get them to come up temporarily before they plunge back down. These are the days I see him struggle and I see him get angry at this disease. Who can blame him? I’m angry too.
Recently we left the house for the day and neglected to bring extra supplies with us. After a hike, we went to get a milkshake and realized his pump had stopped working. He couldn’t have the milkshake I promised and I felt just horrible about it. I could tell from his face he was so terribly frustrated and angry. This is when this disease is hardest.
Long Term
The toughest part of having a child with a disease like T1D is that you know it will NEVER go away. There was nothing we could have done to prevent this autoimmune disorder, but that knowledge only eases the guilt a bit.
One thing I would like people to know about T1D is that it is never get “better” and there is no cure. We will never be able to control N’s blood sugars. There are over 90 different things that effect a T1D’s blood sugar levels outside of food – everything from stress, to sleep, to hormones (puberty is double awesome), to the weather, so basically everything. Our goal is flexible management of the disease. We have target ranges and we do our best to stay in those ranges. Sometimes his CGM looks like a roller coaster with huge swings and other days it is just a bumpy road. We never know what the day will bring.
I know more break throughs will come in the treatment of this disease (maybe his brother will be able to help!) and each breakthrough will make life easier for my son.
But in the meantime, we continue to make peace with what each day brings. We count carbs, track A1C’s and glucose levels, and keep up with changing CGM’s and insulin pumps.
And we live the mantra “Child first, Diabetes second” as best we can.
Volunteering at a recent rainy JDRF OneWalk in Baltimore