Wednesday, August 31, 2011

One Year

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.



  1. Thank you for making me cry at 5:30 in the morning!!

    Happy D-aversary!! May your smores be gooey and your numbers not be screwy ;)lol yeah, it's early.

  2. Hope you all have a great weekend :) Thanks for sharing.He is blessed to have a great mom like you.

  3. Love your positive outlook. I always am so happy to hear when someone can see that life is still good. So very good. We have our babies. Regardless of the diabetes details. Thanks for sharing your story.

  4. This is the only time I will intrude on Stephie’s blog because it really belongs to all of you….but on the 1st anniversary of Adam’s T1D diagnosis I just wanted to acknowledge my wonderful daughter, what a wonderful mother she is, and how she’s handled all of this with such Grace and Fortitude, in part because of all of your support for each other. You all have such an overwhelming challenge dealing with this truly unpredictable disease, day by day, sometimes hour by hour in addition to the ‘normal’ challenges of everyday motherhood. And in spite of the challenges, you are all still able to find and celebrate the joy and wonderful things in life.

    I am a huge fan of glassybaby ( so in honor of my daughter, I have given her these four glassybabys…..Grace, Fortitude, Hope(for a cure), and Angel (to watch over her and protect her). If you have a chance, pls check out the website, if only to check out their meaning and origin and all the beautiful colors. They are truly beautiful when lit and give off kind of an inspiring glow that warms the heart. They are all named for special reasons, some fun, whimsical, emotional and unique for their goodwill purpose.
    Stephanie's Very Proud Mom.

  5. I am sitting here at work reading your post.
    Tears in my eyes.
    You truly are amazing and Adam is a strong little boy because of you.
    I admire you for many things, Steph

  6. oh stephanie what a beautiful post. i am glad the time was finally right for you to share adam's diagnosis story, and you told it so vividly. congrats on making it through the first year!

  7. Such a beautiful post filled with love!

    I knew it with Jack, too. I got chills reading that part of your story.

    Here's to many more years of living life to its fullest!!!


  8. Such a beautiful post! I am crying. I get it. You are doing so great teaching him how to live life to the fullest with diabetes as an afterthought. Yes, that is what us D-Moms do and you are amazing! Enjoy your weekend celebrating Adam's life! He is a miracle and such a trooper. I think your Mom should post more often too and I'm going to check out the glass babys now!

  9. Beautiful! Lots of love to you all on your first Dversary!

    ...and enjoy those smores!! :-)

  10. Thinking of you and your family on this first year "d" anniversary. Lots of love and blessings coming your way from Ohio.

  11. This crying thing must be contagious.

    I love the way you described it. I hate that it ever had to happen, but every time I hear another story like this, there are so many things that hit so close to home. It must have been so strange having a sense of what was about to happen.

    When you were describing the pictures of him falling asleep the summer before he was diagnosed, it reminded me of the pictures I had posted of Liam on our family blog guzzling water during his first t-ball practice. I joked that his water bottle was his favorite part of t-ball, and just a couple weeks later... not so funny anymore.

    So glad your sweet boy is showing D who's boss and you are here doing what you do. I hope you do decide to celebrate this. More cake?

  12. what a beautiful post and thank you for sharing your story. Congratulations to you all for doing such a fabulous job for the past year. You should all be very proud of yourselves and I hope you all enjoy the campfire and s'mores!!

  13. You and Adam are amazing! What a good post. Isn't it amazing how God prepares you? I knew too. I just knew. It was so hard, but looking back, I'm grateful that He was helping me through. Love you!

  14. This was a beautiful post! You should think about submitting it into a diabetic magazine!

  15. Beautiful.

    Absolutely beautiful.

    One year down...a lifetime to go.

    Praying alongside you for a cure.

  16. Now I am crying and I cannot stop. I'm so very thankful for the day Adam was saved and I am also so thankful for your friendship and the bond that we have as d moms and as friends.

    Thank you for sharing your story. Same - Same