In the middle of this…

On 2/27, the day after my daughter was diagnosed with type 1, I was in the ICU with her when my phone chirped. Since we were in a lull, and I was mostly coherent, I checked what sounded like a tweet. Sure enough, here is what I saw:

Emma Tweet

Emma is one of my Running Press siblings. Her YA novel, CODA, set to release in a couple months, and the advanced reader copy I have is making its way around my classroom. The kids love it. Therefore, I felt it necessary to check this link, in spite of my surroundings.

I read, and found at the bottom of the post this question posed to Emma: 10. What else about the book might pique the reader’s interest?

She lists a number of things in response, and then adds some bumps for writers, including: “Eric Devine, my publisher/editor sibling, author of TAP OUT and the newly-announced DARE ME. I think he’s editing the latter right now, but if he has a minute I really want to know more about it.”

Now, here I was, in the hospital, my mind nowhere near writing or publishing, even though I was, indeed, in the middle of editing. But could I pass up this opportunity?

No. But at the same time, I’d yet perfected my elevator pitch of Dare Me. So what the heck could I do in 140 characters?

I flipped over one of the endless sheets of paperwork we’d received since Kaygan entered the hospital and I focused with all the creative energy I had for a few minutes and managed to come up with this:

tweet shot

I sent it off hoping for the best, praying I didn’t sound like an idiot, because Dare Me, while about all of these things, also has a wonderful undercurrent about family and friends and what we are willing to do for each other and how much we can sacrifice. And, as in all of my stories, there’s a search for one’s identity. But I couldn’t cram all of that into such a small description. And I didn’t have the time for multiple tweets. So there it went. And Emma replied:

emma response

That made me happy, and in that moment I needed a little happy.

Therefore, I sincerely thank Emma for providing an opportunity to speak about my work, which I just submitted the  last substantial edits for (fingers crossed). That means I’m moving into the fun territory of cover reveals and guest posts and all the promo that goes into launching a book. I am as excited as I was for Tap Out, but less scared. At least this time I know what to expect. That fear of the unknown always gets me.

And it’s fortunate that at this same time Kaygan is doing well. She’s responding beautifully to multiple injection therapy, and the paperwork is already complete for her insulin pump. Onward and upward.

And if there’s one bit of wisdom I’ve learned through this it’s that we are always in the middle of one thing when something else emerges. That’s life, and just something we must make room for.

The Rabbit Hole I Fell in Last Week

It is impossible for me to fully and articulately capture what my family and I experienced last week, mostly because I am still too emotional about the events. Therefore, I’m relying on a combination of Google images and pictures taken from my wife’s phone in order to keep this post shorter than the full-length chapter that my narrative of it would be. Long story, short: type 1 diabetes sucks, but family is stronger.

“D” day.

My five-year-old, Kaygan, had been “off” for a couple of weeks, sleepier and crankier than usual. But it wasn’t until last Tuesday when she was crying that she wanted me to take her to a doctor because she was so tired that it clicked. This is a classic sign of type 1, and I grabbed my trusty glucose meter and did what I had to. The result sent us to the hospital.

The E.R.

We were admitted rather quickly and the hospital’s meter confirmed the reading mine had displayed. My daughter was diagnosed with type 1. She cried, as did my wife and I, but we then pulled it together because this little face needed us to be strong.

Photo: Eric and I need to take a moment to thank the amazing staff at Albany Medical Center's Pediatric unit. Kaygan was diagnosed with type 1 diabetes last night, and we wouldn't be home resting comfortably and adjusting to our new life without them. Also, thank you to all our family and friends for keeping us in your thoughts in prayers. We are ready for this challenge with our super trooper!

Overnight

Sleeping in a hospital is near-to-impossible. Sleeping on the pull out chair, even more so. Sleeping on a pull-out in the pediatric ICU is a form of torture–you nod off only to be awoken by a beep of a monitor, a nurse checking vitals, a child crying. Fortunately, my wife swapped with me, so I could have a few hours in the cherished position next to our daughter. 

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The Next Morning

Kaygan woke up rested, and happy to be feeling better. She got to eat, something she hadn’t done beyond a few crackers in over 12 hours. However, she would soon find out, quite sadly, that this day was the beginning of an entirely new existence.

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Supplies and Education

I have had type 1 for 23 years. When I was diagnosed, I received an injection and was sent home, told to come back the next day. My daughter was seen by an Endocrinologist, a team of Pediatric med students, a Nutritionist and a Certified Diabetes Educator, who came loaded with swag, like the bear pictured above, books, and lots and lots of medical equipment. We learned–or had refreshed–the ins and outs of care, and Kaygan began to realize that all the things I do, she would have to as well.

d art

Home Sweet Home–Kind of

Less than 24 hours later we were home. Mostly because of the incredible staff at Albany Med. But also because of the combined experience and knowledge my wife and I possess. She’s been with me since I was 16, so she’s as much of an expert, but both of us had to pull out all of our parenting skills once Kaygan was settled and had her first meltdown. The words that haunt me: “I don’t want to do this!” I don’t blame her. Because no one does. But damn it, we have to, and we had to help her come to terms with this.

Our other daughter

Through all of this our eldest, Grace, was amazing. Supportive, encouraging, caring–every attribute a parent wants to see from his or her child. But the next morning, after going to school, we got a call from the school nurse. Grace was puking. A lot. So my wife went and got her. We parked her on the couch, and then proceeded to put up a wall of disinfectant between her and her sister. A new type 1 patient and puking do not mix. Thank, God, Grace understood. She truly lives up to her name.

Visits and Trust

My in-laws came to stay with Grace so that we could visit the school nurse, principal and her teacher. I’ve been on the other side of reviewing 504 plans, but never have I realized how much trust and faith go into these documents. As parents we have to believe that the school will follow what we’ve discussed and put in print. Fortunately, I have absolute faith in my daughters’ school.

Coming around

Following the visit and then shopping and then soul-searching, my wife and I were thrilled to see the turnaround in our girl. She was eating and adjusting to the fact that injections–or “polka dots”–follow meals, and finger sticks or “finger pokes” are an ongoing affair. Somehow, in such a short amount of time, it was becoming routine.

Photo: So happy to have my little girl back to "normal"! She made a new friend in Rufus, the diabetic bear! Hearing that giggle and watching that wiggle around the house is awesome!

Bowling and Beyond

Sunday came and we finally left the house as a family, attending a bowling benefit for the brother of boys in our girls’ school. We walked in, nervous for the physical drain the activity would be, but happy to be back with the community, who was, at that moment, supporting a family that is plagued by much greater medical problems. It was humbling and reassuring. And yes, Kaygan did get a strike.

The Tooth Fairy and our sneaky dog

Sunday night we settled in, prepared to tackle the week, and Kaygan lost a tooth. In typical fashion she was excited for the fairy and the money, and my wife and I put one more thing on the list. I tucked the girls in and as my wife said good night, Kaygan requested her tooth, which was in a plastic bag on the couch. I found the bag being inhaled by our chocolate lab, Nola. The tooth was gone. I panicked, found a bag of popcorn and ripped off a piece, hoping it would pass. I put the impostor tooth into the special pouch for the fairy and then told my wife what had happened. She demanded we search again. With my sad-faced dog looking on, amazingly, the tooth emerged, on the coffee table, and very clean. Happily, I admitted to our daughters what I had done and we had a good laugh, thinking what the fairy would have brought for a kernal.

And, I don’t know, something in that bit of normalcy–for our family at least–made me feel as if we were turning a corner. A slight one, but a new path for sure.

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Monday

Kaygan returned to school. Nerves fried, my wife and I hung on. And all went well. The entire school was thrilled for her return and she came home beaming. She bounced around the house had her finger poke, took her polka dot and proceeded to play and dance with her sister. Just like she’s done in the past. But now, a week later, in better health than she’s experienced in a while.

It’s a beginning of a life that will hold ups and downs in a way that not even I, with my decades of experience, will be able to comprehend. But my wife and I will try, because that’s what you do for your children. Whatever it takes. Every day. 

I’ll post to update on Kaygan and, of course, writing. But it’s obvious to me, even at this early stage, that my perspective has been altered. And that is fine. We live, we learn, and then I write. This is our life, and thanks for taking the time to follow along.

Interview Thanks

I had the pleasure of being interviewed by Elizabeth Snouffer of diabetes24-7.com. She stumbled upon my first novel, This Side of Normal, while researching for support groups for adolescents with type 1 diabetes. She found my work and was compelled to share.

I sincerely appreciate the opportunity, as it allowed me to answer questions about diabetes, writing and life in general. Of course, Elizabethwas gracious enough to let me plug Tap Out  as well, so that was just fantastic.

If you are interested in the interview please check out her site. If diabetes is a subject that is near and dear to you, I would also suggest liking her facebook page.Elizabeth clearly puts great effort into supplying a blog with pertinent and meaningful content on life and diabetes. Support her work. Thanks.