Sunday, September 10, 2017

Tulip Tales: Emma Jane

I am thrilled to be able to share this space today with my dear friend, Sherry. Sherry is one of those power house Moms that makes you wonder how she does it all. Sherry knows that raising children is the most important job we possess, and I have learned so much from her over the years about strength, resilience, and rising above adversity. Sherry has three incredible children, and this is Emma Jane's story.


I remember this carnival ride from when I was younger. It was a huge flat circle, and you stood up in it against the outside wall. Once the carnie got it started, it spun faster and faster, all of your weight pressing into your back, your body paralyzed by the centrifugal force, and it would continue until you were ready to scream for the ride to stop. Almost by magic, it would stop, and then - after swearing you would never ride it again - you would. 

That is the closest thing to how I felt leaving the hospital with my daughter Emma Jane after receiving her diagnosis of Type 1 diabetes. The paralyzing pressure would come in waves, pinning me to the wall as I struggled to breathe. And then, interspersed with the waves, little bits of relief. The day I felt like I finally understood what ketones were, and the days when I felt like I had played some small part in 24 hours of stable blood sugar, I’d fist pump in victory as I fell asleep, thinking “yeah, I got this,” only to wake up for a night check to see 3.1 on the meter - or worse, 1.2 - and we'd start spinning again.  Slowly, over time the light creeps in, that paralyzing feeling starts to fade out, your confidence builds, you feel stronger, smarter, and you can separate yourself from the disease. 

You realize that the very reason you hate Type 1 diabetes is because you can’t control it. No matter how strong you feel when the ride comes to a stop, you know it’s going to start spinning again. You just have to ride it out. Then, suddenly, a year has passed. You look back at photos of your child, right before the diagnosis - her arms so thin they look ready to snap, the dark purple bags under her eyes, and your heart can’t help but hurt. You know you shouldn’t feel guilty, but you do. You wince when you see that photo of her eating a huge apple, or drinking a mug of hot chocolate and visualize how high her sugar must have been. The danger was invisible to you then, and now it’s almost the only thing you can see.

Diabetes is real, and my precious child still has it. Somewhere in your mind you kept thinking it wasn’t real, that tomorrow you’d wake up and you wouldn’t have to put a needle in your child every time she ate a meal; you wouldn’t have to coax drops of blood out of her tiny fingertips a dozen times a day. You wanted to think that this wouldn’t last, but it did.  But you also lasted. You woke up each night when you should have. Maybe it took you a bit longer to roll yourself out of bed at 3 a.m., but you did it. Even more importantly, your child, the one who fought and screamed at you for hurting her on those bleached white hospital sheets, shes getting stronger. Braver. Now she’s checking her own blood sugar, she’s not even flinching when you stick her with that syringe, and she only winces slightly when the insulin is a little too cold.

Celebrate all of those tiny victories. Celebrate the time you nailed that bolus for that huge freaking cupcake or kept her from going low when she was out sledding for six hours. Reward your kid for when she didn’t fight you over a finger poke. Really, really importantly, reward their siblings for how they grabbed a juice box for you, for when her sister approached you calmly and said, “I think she’s low” and when you tested, her blood sugar was 3.2.

Every year brings new challenges, but it is important to recognize that living with Type 1 diabetes can also bring togetherness, new experiences and joy. Even though the ride won’t stop spinning, we’re all on it together.

Here is how it all began.

On the morning of September 3, 2011, there was a lot of excitement with back to school shopping for Emma Jane's first day of Grade 1. She was looking forward to seeing her friends that she had met in Kindergarten, and she couldn't wait to meet her new teacher. Our excitement quickly changed, when for fun, we took out my father in law's glucometer and started finger poking each person in our family, changing the lancet and going to the next person just like an assembly line to see what their sugar was. How exciting was that, we thought?! I remember the anticipation waiting for the meter to beep, everyone with their heads together trying to be the first to read the number as it beeped and the numbers popped up. 

Emma Jane was quick to put out her finger, as if it was a game she had to win. When the meter beeped and the numbers came up I leaned down to make sure I was reading it right. Must have been a mistake, I thought, and we tried it again. Same number - 29!  Hmmm...that's strange, I thought, and thinking nothing of it, figured we could wait an hour and try again to see if it changed. I went about my day not even thinking it was serious. A little past the hour we double checked and sure enough her number read the same thing - 29. Terry said, "Sher, I think you should call the help line at the Janeway just to see what they say".  

We are no strangers to the Janeway. I have spent many hours and more nights there than I can count. The staff, nurses, doctors, and rehab team are no doubt our second family. Everyone there knew us, as we have a twin that was born 13 weeks premature and weighed only 2 pounds each. They spent 6 months in ICU and NICU and we had been back many times for surgeries, therapy and appointments since their birth. When Emma Jane was born, she was a ray of sunshine in a whirlwind of emotions. She was healthy. She spread happiness on our darkest days and she completed our family.

I called the helpline at the Janeway and I knew the routine. I said to the girl that I was a bit alarmed because we were all fooling around checking blood sugars and my daughter's came up over 29, what should I do? In my own mind I really didn't think it was serious. I had no clue what it could have meant or what would happen next. She quickly replied, "Mrs. Jones, you should pack a few things for her and bring her right in right away".

I look back on that day and I was so naive. It was as if time stopped, yet things were happening so fast around me. Emma wasn't sick and I kind of felt foolish going to emergency. Gosh was I wrong! I checked in and they were expecting us. They rushed us to the room inside and I remember texting Terry and saying, "It must be serious, they took us right inside to triage." They immediately started an IV and gave Emma a needle, telling me they were trying to get her number down. This was routine. The nurse at the desk picked up the phone and I could hear her ask if they could send the doctor down from upstairs as they had just received a 5 year old girl, Diabetic. I sat by Emma's bedside and I felt a flood of emotion rush over me. Diabetic? We are the only ones in this room.. was she really talking about us? I called her over and asked if she had just said Emma was diabetic. She tried to reassure me that the doctor was on the way and would speak to me soon. I knew what this meant. It wasn't something a band-aid could fix. This was serious.

That day is forever etched in my memory. I can't erase hearing the nurse say those words. It echos over and over in my mind. Your child is diabetic.Your Child Is Diabetic, YOUR CHILD IS DIABETIC. It's life threatening. There is no cure and she will live the remainder of her life battling this disease. I can still close my eyes and see Emma crying. What were they saying? It was hard for me to hear. I can't imagine what her 5 year old mind was trying to process. She cried with every needle poke. Laying in the hospital bed with her sad eyes screaming at me to make them to stop hurting her. I couldn't stop them, this was our life now. How could we go on giving her several needles everyday? I would be the bad Mommy, always giving her a needle. I put my head down and cried uncontrollably. I felt overwhelmed. I wanted to blame someone. Did I do this? Was it something I did during pregnancy? I even blamed God. "What did I do to deserve this", I repeated over and over in my head. Surely God knows my plate is full already?

Here we are, over 6 years later. Some days I'm not sure how we got here, or how we have survived this long. We have overcome and faced many challenges, hospital stays and scary moments. Emma has gotten braver and more mature. Her understanding of her disease has grown much broader, but we continue to take it one day at a time. When the sun rises and our first blood sugar reading is done, then our day is based on that. Life with Type 1 diabetes is unpredictable and just when you're getting comfortable, it throws an axe at you to make sure your not slipping. One thing that remains constant is our family's support for each other and for Emma. We will fight this battle with her until there is a cure. Every day we pray for a cure. Until then, she will always be our spunky, beautiful, fun loving, bubbly little girl.


Sherry, you are one incredibly strong mama. I know that your family has been through so much, but I look at your beautiful, happy children and I know you are doing something right! 

Emma is so mature, so responsible, and so kind-hearted. She has always had a connection with Brennen and she is so very sweet to him. She is an all-around good kid - as are all three of your children! They are all thriving and doing incredible things, and that is a direct reflection of the way you and Terry have raised them. I know that some days are easier than others, and that some days you feel like you are absolutely drowning, but don't let the hard days overwhelm you. Take it one day at a time. Ups and downs are what life is all about! 

Thank you for sharing Emma's story. I love how you say, "living with Type 1 diabetes can also bring togetherness, new experiences and joy. Even though the ride won’t stop spinning, we’re all on it together." So true, and so relatable, no matter our journey.

If you would like to be featured on Tulip Tales, please email me at:  Please include a brief description of your child and their condition, along with any pictures you would like to share. I will contact you with specific questions.


No comments:

Post a Comment