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.
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.
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.
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.
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.
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.
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.
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.
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.
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.