Most people think the life of a potter is full of sexy Demi Moore/Patrick Swayze moments sitting at the potter’s wheel, four hands becoming one in the clay as the form you’re making grows from a lump into a shape that makes most people raise their eyebrows. “Uhm, honey…what was it we were supposed to be making again?”
Not even close, people!
It’s long hours, which for me meant late hours and hard tedious work that had a tendency to bully any other non-clay thoughts right out of my head. Full disclosure? I can be a terribly inattentive parent the two weeks before a show. Unless you’re a sweet little sugar who shows up in my studio at 2:00am to sit on my stool for a chat.
In the many weeks before our December open house, I noticed an increase in such late-night visits. I chalked it up to her missing me and needing some mommy time, so I’d let her perch on a stool and watch me work. She’d also pee, get a drink, and chat a little more. I always put communication with my girls above all else – including sleep and homework. They feel like they’re getting away with something big, and I get to know just what’s up in their precious little noggins. It was time I cherished and it felt like our little secret. The daddy’s didn’t have to know.
In the midst of show prep, we had a fun photo shoot for an international girls’ magazine called Kiki Magazine.
We were both to be in the magazine, contributing how-to’s to the Art Bin section. Her feature would be a how-to on friendship bracelets, which she had been making to sell at our open house, and I had been asked to make heart-shaped tie dye shirts. After a decade of making tie dye shirts at Girl Scout camp, I finally had it down! Both submissions were to be published in the January/February 2012 issue. She walked in looking so stinking COLORFUL that they did a few photos of her sporting an armful of her creations.
Over some unremembered number of weeks, I noticed the size of her drinking cups at night were getting taller and taller, the trips to my studio and bathroom increasing. “Honey, that’s a sign of diabetes, you know.” Even so, I think, “Nah.” Life continued to be crazy with hours spent in the studio a blur, heat in the house intense as I sent round after round of pots through the firing process, and my brain fully focused on setting up a show and presenting my body of work so it would be enticing enough to leave my house, finding new places to live and be loved. This bread boat in this photo was one of those pieces, and I was fortunate enough to be included in a show alongside my friend and mentor’s serene porcelain work.
The weekend of our show was a huge success. She sold enough bracelets to purchase her own Kindle Fire, and I sold enough pottery to pay off some big bills. That was December 5th/6th. I kept my displays up and my sales continued for another week. Still mildly nuts, and almost ready for Christmas morning.
On Tuesday, December 13th, She came home from dad’s house and something was definitely different. I checked her height with a quick embrace, pulled her arms away from her side and proclaim that something was off, that she seemed taller, but still. Still. As soon as dad left, we went to our measuring door and sure enough she was taller! So. We let it go another day, but I still make a call to the nurse at our doctor’s office for a weigh appointment on the 16th before school. The Wii scale says she’s some 5 or so lbs off. I secretly think it’s more.
Thursday night, she emerged from the bathroom with her hair in a turban, wearing nothing but a spaghetti strap tank, which was weird for that cold December night. And then she turned her back on me. Crap! Crap! Crap! “Mom, is it weird that my bones stick out like this?” Panic rising. My baby is sick. “Well, honey, remember we have that nurse weigh-in tomorrow morning. You have lost weight. You sort of, kind of, look like a little bird now, don’t ya think? We’ll see what they say in the morning, okay?”
I cried all night while my husband tried to console me. I knew. Pip had diabetes. After much anxiety, morning came and I called her dad to tell him what was up and for him to prepare to get a call from me later. I was ready. I had symptoms written on a note with the dreaded word DIABETES!!! scrawled at the bottom. She stepped on the scale.
10 lbs gone.
10 FREAKING lbs. I handed the note to her nurse and said, “Call him.” Then I lost it. Such a terrible moment. One of the veteran doctors offered me shelter in a nook around the corner, and I choked out a chirpy, “I’ll be right back sweetie.” There were nods and knowing, and an appointment made at the satellite office where our favorite doctor lives. The short ride to school was filled with me trying to keep my shit together. “Mom, do I have diabetes? I lost 10 lbs. My friends are going to worry.” “You might, but then again you might not. We’ll see Doc Bill at 4 o’clock and deal with whatever comes, okay?”
Here She is in a photo that was taken a bit just prior to diagnosis. We received it after diagnosis. Wow. Just wow. In August she weighed 66 lbs at her well visit. Tiny, but that was just her. Or was it?? No sugar in the urine in August.
Back at school, I quickly ducked into the nurses office for a chat and waterworks come hard and fast. I got the ‘go home and pack a bag sweetie, you’ll be there at least 3 days’ chat. Then, as if it were the most normal day in the world, and I secretly knew life was going to change forever, I meet my high school friends for our scheduled lunch. It was at this lunch where one friend waved her hand in my face dismissively, saying, “Oh diabetes? Well, that’s no big deal, it’s so manageable.”
“Excuse me, waitress? Can you tell me where my REAL friends are?”
Now, I know she didn’t mean anything by it, because, I mean, how could she possibly know what she was talking about? Right? I wanted to punch her in the face. And even when I see her now, I’d like to explain to my sweet, albeit ignorant, friend just how wrong she was.
4 o’clock came and we’re in the doctor’s office with Dr. Wonderful who had already seen us through enough horrible in this kid’s life! He looked at her blood glucose and checked the sugars in her urine, made a quick glance my way, and then poured on the compassion. “Sweetie, I’m sorry but you have a lot of sugar in your urine and blood, which means you have diabetes. You have to go to the hospital now so you can get the help you need. We need for them to confirm it for sure. It’s going to be okay.”
Dad took our sugar into the lobby to wait for me, and the doctor and I cried together. Looking back now, I can imagine how helpless he felt. He shared with me that he was worried all day, knowing that that kind of weight loss means two things: diabetes, or cancer. The week prior, he lost one of his young patients from a terrible chronic illness. It could be worse. It can always be worse. Oh, but come on…can’t you give her a little cancer instead? Cause, you know…that’s more curable than diabetes is. This is a real thing my friends. We all think it. Some of us even say it out loud. Unthinkable, I know.
The hospital stay was 6 days long. Parents of CWD are forever checking boxes next to lists on forms. This is my own list of experiences that are likely to occur (and did for us) in the hospital following a T1D diagnosis. I have no time to make stupid little boxes just to make this post look pretty.
Socked feet on a dirty ER floor
Sleeping with her in the ER’s narrow bed
Peeing on a stick
You Can Do This! perkiness
Did I say needles?
Blood on the sheets
Feeling totally stupid
Late, late, late nights with mom
16 visitors at once
Diet Cokes & Jello
Tegaderm allergy? Crap.
You learn mom, I’ll sleep
Donuts for breakfast? You bet.
Fish and veggie breakfast for mom? Best husband ever.
Effing cold air
Doctors talking it out
1 mean nurse
Babies in cribs getting poked
A new Dx’d boy comes and goes in 3 days
Teams of people loving on your kid
Lenny the Lion
I know about Eli Lilly
Now I’m really going to “know” about Eli Lilly
Botulism? She did, really? Really.
A future lost
Chronic fatigue you say? Yes. I say.
Let’s go home, kid.
This was the first time that my ex-husband, husband, and I had to juggle our time with our daughter who was staying in one room, one bed. I stood my ground as mom and stayed every minute of those 6 days. It was awkward. I knew it was just the beginning of awkward. I hate awkward.
This someone special would sneak into her room every night until her 6 pagers lit up her belt, making it too hard for her to stay.
There were bright spots peppered throughout our stay. Bright spot #1: Pip found out she was going to be Kiki Magazine’s youngest cover model – and the first with Type 1 Diabetes! We unveiled the proof to her and she thought it was a joke played on her by her Step-dad who is wickedly good at photo shop. Bright spot #2: Lane had auditioned for the role of Veruca Salt in a Willy Wonka, Jr. production. Instead, she was given the role of Charlie. An international cover-model and lead in a play? They were gifts. Gifts so precious that would lift her up in the coming months when life with diabetes would feel hard. The play was a gift because it forced us to continue to live life and take diabetes on the road. It also gave me a glimpse into her life on stage and a talent that surprised us all. It was also the first time that I turned to one of her friends and said, “Will you please take on the role of caregiver during breaks backstage and make sure she drinks this?” It was her way of proving to herself that she can do anything she wants to do while diabetes rides on her shoulders.
Some days I have to remind her of that moment in her life, when she was in a raging honeymoon stage while transforming herself into a poor little boy who won a golden ticket. And for a moment, we forgot all about diabetes.
Below is a post from Posted Dec 20, 2011 6:48 p.m., 4 days into diagnosis and still at the hospital. If I had written more of an emotional entry into our CarePage for my Pip, it would have said something about not being able to catch my breath, or how I wanted to, but couldn’t cry in front of her for the future I had imagined for her that was forever altered (lots of babies that she wanted), and that the immediate future had to be re-imagined (babysitting for other people’s lots of babies). Instead, I did what I do best and hit the ground running to write out our plan, which has always helped me wrap my head around a change in our life that results in a new plan, and to share what her day will be like so I don’t have to repeat myself to countless friends who really wanted to know about her new life. So many things have changed. Reading this takes me back to her making decisions on whether or not to eat based on getting another shot. Pumps are magical wonders and make life delicious and spontaneous. Well, sort of. Here goes:
That’s what Pip is feeling like today. Another day of education has left us feeling drained and overwhelmed. We need manila folders, binders, and file cabinets for the amount of paperwork we have!
Met with the dietitian, diabetes educator, and social worker for the second day. Today’s lesson was all about paperwork and getting registered with Juvenile Diabetes Research Federation, BCMH, another Ohio facility that helps families with diabetes and also tons of support literature to plow through.
We chatted up the dietitian about food choices throughout the day and when was the best time to eat what. Like a snack at school, which is right at the end of a bolus injection timeframe, and just 1 hour before a lunchtime read and injection for carbs consumed for lunch. That snack will be a no-carb option, which will be easiest to deal with. Unless glucose is high and she needs insulin anyway – might as well factor in carbs!
Will meet with the dietitian and diabetes educator again tomorrow to go over real life situations, and our daily routine. For the first few weeks, we’ll have to check glucose more often and report in to the hospital every day so the doctors can establish good carb ratio and correction factors for when we formulate insulin.
Here’s what a day at school will look like when Pip goes back on Jan 3rd. This will only happen for the next few weeks, then we get more regular.
8:00 a.m. calculate breakfast carbs, check glucose, calculate insulin, give insulin, and eat right away.
11:00 a.m. Check glucose and make corrections if glucose is too high. this is where she can eat a carb snack if she needs insulin, and a non carb snack if she doesn’t need insulin. Why get a stick if you don’t need it?
1:40 p.m. Check glucose, decide whether or not she needs just insulin for carbs, or does she need a correction (if she didn’t get one at snack time.)
3:40 p.m. Check glucose before getting on the bus!! if glucose is low, eat some skittles! Drink some juice or some starburst to bring glucose level up. Can’t bottom out on the bus!
4:40 p.m. Check glucose, give insulin, eat snack
7:40 p.m. Check glucose.Calculate dinner carbs, calculate insulin, eat right away.
9:30 p.m. Inject Lantus, long-acting, insulin for overnight.
Midnight: Check glucose, correct with insulin if too high. Drink a little juice if it is really low.
3:00 a.m. Check glucose, give insulin if high, drink a little juice if it is low.
8:00 a.m. START ALL OVER!!!
That’s our first few weeks at home. WE CAN DO IT. So, to anyone who says, “Aw, that’s nothing!” We dare them to try it themselves. But trust me…you do not want to be in our club.
When the first few weeks are over, we’ll skip the three hour checks of glucose levels after giving insulin, and skip the overnights. Still a pincushion, but better for sure!
We never, ever, ever, ever, ever skipped the overnights. And still don’t. Risk her life? Not on my watch.