This is the face

October 1, 2014. I was sitting in the passenger seat of the first car I ever bought (well, with someone) as we drove the 1.5 hours to a birthing center. In the backseat was my ten year old and my eight year old, quietly playing with their handheld game devices piled under pillows and blankets to keep them warm and preoccupied over the next several hours.

The night before, my water had broken. That was a surreal experience in and of itself because this was my natural birth. The other two, they’d been traumatic hospital births but not this one. 41 weeks and 6 days we waited for this kid. I was terrified the entire pregnancy that something was going to be wrong with him or something was going to go wrong. At my 20 week ultrasound, my blood pressure was so high they nearly admitted me but it was entirely due to the stress of seeing something on that day that would change what I was so excited about. Finding out he was a he was a relief too. One girl is enough.

And then… before I knew it an amazing (big) baby was mine. Everything that I wanted. Plump cheeks and a round head and that wonderful baby smell. He was amazing and everything I had dreamed of (literally, I dreamed of him several times before I was even pregnant). I think the kids were a bit overwhelmed and I know first time new Dad (but 3rd time real dad) was exhausted after supporting me through my completely natural labor, and my body was done because he was 10 pounds of plump smoosh … but he was amazing.

He continued to be amazing, even though he wasn’t meeting his gross motor skill milestones the way he should, so we had to do some physical therapy to keep him on track. He crawled, he cruised furniture, and even started walking earlier than the other kids in spite of that.

He was still amazing when three separate doctors told me he was nearly blind in one of his eyes and he needed both glasses and to patch in attempt to strengthen up that eye. But you know what’s hard? Keeping glasses on an amazing 18 month old. That is hard. And he was still amazing, even though he wouldn’t wear his glasses he compensated well for the lack of vision.

He didn’t talk – he spoke in his own baby speak. Nobody could understand him and his vocabulary wasn’t up to par. He was amazing as we brought him to speech therapy twice a week just to get 8 weeks in before we moved across the entire country. The first time he said “Banana” we threw a party. The first time he said “Mommy, what are you doing?” I cried… because it was amazing to listen to this little guy ask such a profound thing. He wanted to know what his Mama was doing, and he knew how to ask.

In February of 2017, he got sick. Very sick. It frightened me because his temperature was over 104 and amazing as he was, he refused to take any medication for it. He would scream and fight and make himself throw up (which he did when he was an infant too. He was always pretty spirited). I was scared for him, because every minute felt like I was struggling to decide if I should take him to the emergency room. Then he developed a rash all over his entire body, so to urgent care we went.

Oh, it’s no big deal. It’s just Hand, Foot, Mouth Disease. He’d just started daycare. Normal, childhood illness.

September 16, 2017 was a Saturday. I had to work that day. He was really lethargic and snuggly and I knew he was getting sick. I cuddled him and he napped with me off and on throughout the whole day and then I went to work.

“He threw up twice. But he doesn’t have a fever.”
“He’s really lethargic and sleepy, I’m going to let him rest. Still no fever.”
“He threw up again. Still no fever. Weird.”

Those were the texts that I got while I was at work, and the entire time my heart was sinking into the pit of my stomach because I knew. I’d known for months, but we said it was just the hot weather and the easy access to water that made him so thirsty. He was getting taller and that’s why he was appearing to lose weight.

So on my way home from work that morning on September 17th, I stopped by walmart and got a $20 device that would tell me if I was just being worrying Mom that I’d always been. I’d worried about him from the moment I knew he existed. I had to constantly pull myself back from thinking the worst thing possible because of how special he was to me. This device would tell me I was being unreasonable.

485

That cannot be right. Let’s check Dad… 58. Okay. Let’s check him again.

490

We took another trip in the car for him, but this time it was to a hospital. And quickly. I had to keep talking to him because I could tell he was going in and out of consciousness. We opted to go to a hospital closer to home than to a children’s hospital because of his behavior in the car. I knew if we didn’t get somewhere soon, something very bad was going to happen.

He was just in a diaper when I walked up to the counter holding him. He was awake, but he was so limp in my arms that he was heavier than normal. He was breathing so fast and hard, like he’d been running and playing.

“I think my son is a diabetic and is in DKA.”

The lady kind of looked at me weird. “You think? Is he a diabetic?”

“No, I don’t know. But I checked his sugar and it was almost 500…”

And then it was a whirlwind. Labs, IVs, IV fluid, a long trip in an ambulance to a children’s hospital and during that time the EMT was hovered over him, clearly afraid that my boy was about to do… something? Cardiac arrest? I don’t know but he seemed nervous. ICU for two days and four more days in the pediatric unit learning how to give insulin and count carbs and, and, and…

Every day I get to wake up and hope that I won’t walk into his room and he will be dead. 50% of the type 1 diabetics I’ve known have died of complications from their disease. His pancreas just decided to quit working, and for the rest of his life or until they find a cure he will have to deal with it. Every day. He won’t be able to eat, shower, swim, play sports, play with his friends, go camping, go on vacation, go to school, go to a friend’s house, to for a sleep over, go to his grandparents house, go to camp in the summer, stay alone for a long period of time, get married, have kids… and the list goes on and on, without thinking about diabetes. Do we have all the supplies? What if there’s an emergency? What if we count carbs wrong? What if he’s sick? Exhausting.

But he’s still amazing. He’s even MORE amazing, because every day he, without complaint, allows me to check his sugar. We give him insulin. He eats and drinks in his sleep when he has to. I’m not complaining, because this is what it is. It’s exhausting, but the technology is advancing almost daily and we will be at the forefront of those new devices that will help him live a longer, healthier life.

He’s a super hero.

This is the face of diabetes.