Put up your feet my friends, grab a cup of whatever tickles your fancy (I prefer wine, but that is just me). This is a long one!
It has been one whole year since Adam’s diagnosis.
Over 3600 needle pokes to his little fingers.
Over 800 injections.
Approximately 90 site changes.
Lots and lots of Dex changes.
I wasn't sure what this milestone would mean for me/us. Honestly, we haven't talked about it with Adam. Maybe it's because I didn't want to make a big deal out of a sad day. But Denise just reminded me of something that I had never thought of before (really!) We SHOULD celebrate! Because this is the anniversary of the day his life was SAVED. Okay, I cry just writing that, but it is so true.
We don't have any big plans because this is a ridiculously busy week for our family, but I think we should do something this weekend. We will be up at my parents' cabin with family, and I just realized that we went to the cabin over Labor Day weekend last year after Adam got out of the hospital too. I'm thinking a bonfire and s'mores are in order.
I never really properly told his “diagnosis” story, so I thought I’d share that today. It’s been on my mind so much lately as I’ve been going through old pictures – automatically classifying things as “before diabetes” and “after diabetes.”
I began getting suspicious that something was really wrong with Adam when we went out to dinner and he drank 4 cups of milk in one sitting. And he was still thirsty. He’d been wetting the bed…and sleeping a ton. I would joke on Facebook about how he’d randomly fall asleep in the strangest places. That summer there were countless pictures of Adam sleeping. It’s sad to think about it now.
That night, I googled. Google can be a mom’s best friend or her worst enemy. That night, it was my worst enemy.
As I searched…I kept hitting on diabetes. I was thinking, “Steph, you are projecting this hypochondriac stuff on your kid. He doesn’t have this.” But I kept looking at diagnosis stories. And somewhere, someone mentioned a “sweetness” to their child’s breath. I went upstairs and smelled his breath as he slept. And damned if it wasn’t sweet. I didn’t want to say anything to my husband, because that would make it real. I still didn’t want to believe it. But I knew.
The next morning, he slept in. I knew I was going to take him to the doctor. I snuck into his room and cuddled in bed with him. I was literally thinking, “This is the last time life will be normal for us. Our life is going to change.” I just KNEW it.
On the way to the pediatrician’s office, I happened to glance down at a few empty water bottles in my car. They were from my local grocery store and happened to have JDRF labels on them. I thought to myself, “This is a sign. I know he has Juvenile Diabetes.”
In the pediatrician’s office, his urine was tested – lots of sugar. The nurse came in to prick his finger. When the number popped up, the nurse wouldn’t look me in the eye. I asked what the number was, and she showed me. It was 550. Tears sprung to my eyes. I didn’t really know what it meant, but I knew it was bad.
Our beloved pediatrician came in, and all she had to say was, “I’m sorry.” She gave me a huge hug and said she just about started crying when she saw his numbers. She’s been with us through the cleft lip, the reflux, the cataract and now this.
When I got into my car, on the way to the hospital, I looked at those JDRF water bottles on the floor again and I thought how incredible it was that so much can change with just one tiny drop of blood.
On my way to the hospital, I called Jason at the airport and stopped him from getting on his flight for work. I called my mom. I called my dearest friend. All while Adam is sitting in the backseat of the car, pretty much bewildered at what is going on. Heck, even I had no clue about how much his life was going to change.
I watched him get his first injection of Levemir and his first injection of Novolog. He was hysterical. And it blew my mind that I was going to have to do this every.single.time he ate anything from now on. For the rest of his life.
One of my most vivid memories from that fog that was the hospital was when I went down to the hospital pharmacy by myself to pick up Adam’s prescriptions. The pharmacist plunked down two huge bags in front of me – those two bags held the items I would need to keep my son alive for the next month. I started crying as I handed over my credit card and I think the pharmacist was a bit freaked out. I cried as I walked back to Adam’s room and just kept on crying. It was the first time in our 3 days at the hospital that I cried. Once I started, I couldn’t stop.
I look back on all that now…and I still cry when I think about it. But I am also hopeful for how much we have overcome and how in just one short year, we are pumping, CGM-ing and kicking diabetes’ ass when we can. Adam has gone from a hysterical child getting pricked and poked every few hours, to a kid who can explain to an adult how to test his blood sugar and do it correctly right in front of them.
He’s a kid who says, “Eh, it doesn’t hurt that bad.” A kid who doesn’t flinch when I test him in bed or change infusion sets. A kid who asks “How many carbs are in that?” before eating something. He’s truly my hero.
Thinking back over the last 5 years – his cleft lip, his ridiculous reflux that required 2 medicines to control, his cataract, THE ‘BETES – I realize that we are living in this place called Life Is Hard. No one gets a free pass, everyone has their very own special challenges in life. But it’s a beautiful life, an amazing life, and it is Good.
There are so many lessons to be learned. I know that Adam was brought into my life to teach me that life is not perfect…yet it is perfect all the same.
When I was pregnant with him, and found out he was to be born with a cleft lip and perhaps palate, the world seemed to stop turning. I wanted to go back, start over in my perfect pregnancy with my perfect little family with no issues. I was afraid I wouldn’t love him when he was born because he looked different. I was afraid the joy of birth would be taken away because he wasn’t technically “perfect.”
And oh, how wrong I was. Falling in love with that sweet boy’s face with the little notch taken out of his lip. He was sweet, he was mine and he was perfect.
It was my first lesson in giving up on “what I think life should be” and what life just is. Accepting it. Celebrating it. Living it.
I won’t ever give up hoping for a cure for Adam. But I will help him live is life as if diabetes is just an afterthought, something that hangs in the background while he does all of the things he wants to do. I will make it easy for him. I will bear the burden. Because that is what us D-moms do.