Welcome to the club

“Love is the answer for the questions we have. Love binds us and tells us it will get easier. Every second, minute, day, week, month – it’s love that keeps us going."

Emily Writes reaches out to other parents of children with type 1.

A few nights ago, a mother messaged me. She was worried about her child. I’ve had so many of these late night messages from panicked parents.

My child won’t stop drinking water. They keep having accidents. They keep wetting the bed. I know what’s coming. I tell them to go to the hospital.

Sometimes I hear back just hours later, other times it’s days.

Welcome to the club. We’re all parents of kids with diabetes now. The type 1 tribe. The new normal.

Six months ago, I was holding a needle and trying to find a spot on my child’s tiny sunken belly to push it into. His father was holding him down, as well as a nurse.

He was screaming. Begging me. “Please mama! I’ll be good!” I was sobbing, and I kept thinking, Can’t we wait until he’s calmer? But we can’t. Because if he doesn’t have this life-saving medicine, if we don’t learn to give it to him, then …

He kicked my hand, and the needle fell to the ground. Pain radiated; my finger felt like it had been shocked. The nurse injected him. He lay in a tiny ball crying. I sobbed, holding my finger. My husband stared up at the ceiling desperately trying to stop the tears from falling.

Later, my husband and I injected ourselves in the stomach with saline. We wanted to know what it felt like. With a ring of fat on me, it still felt painful. He winced as he pushed the needle into his taut stomach. Our son had lost more than 10kg from his already tiny frame.

The nurses were so kind that their gentle hugs and pats and support would always make me cry. I couldn’t work out how we could all cry so much. How were there still tears? Over the last six months, I’ve realised there are always more tears.

And when I see these mothers on my screen, about to fall, head first, down, down, down, into this deep well, there’s so much I want to tell them about being a type 1 mum.

NOTHING IS THE SAME
Six months on, my finger won’t quite straighten. It hurts at night, hurts after typing. It just isn’t the same. But nothing is the same. I don’t need this tangible reminder of that, but somehow it fits.

Our son is different now. He is fuller, he looks more like a strong boy. But he gets tired easily. He’ll be so excited to go to an event, then will suddenly turn ashen and say, “I think I need to go home.” He can predict his falls now.

His best friend is his fiercest protector. When another child said not to pick up his medical equipment because “you catch it!”, she yelled, full force: “It is NOT contagious!” She stands in front of him, like she will do anything to protect him. And sometimes when they play, he rests his head on her lap and she reads to him. She knows inherently his need for rest. His fears. His hopes.

I want to tell those new to the club that it will change every day. That it’s no straight line. I want to tell them that our family is a marching band now, falling into a beat. Starting to know exactly what to do. Hate this tune but getting to know it in our bones. We mess up but are back on track immediately. No room to dwell on mistakes, we keep in step.

I want them to know that in the blink of an eye I cry and cry and cry – still. At the injustice of it all.

They say it gets better, and it does and it doesn’t. Some days, it’s all second nature and you just do it like brushing your teeth. Other days, he says, “I don’t want to die”, and you’re bowled over, king hit. You’re back there in the bathroom at the hospital, face pressed against the wall, trying to breathe. Just breathe.

I want to say join the clubs. Join with others. Find diabuddies!

My son is so fortified by being with other children going through the same thing. Nobody knows what you’re feeling better than a type 1 mum or dad. The community is a blessing.

They are mums who know how hard it is and want to share the load. We are there for each other
at different times; each of us has a turn. We carry each other. We proudly watch our children grow.

My husband and I have turned towards each other. Around our children. Around us have been more whānau, more friends. The team at the hospital are a lifeline; my husband adores them. He feels as if he is getting a school report every time we see them – it’s for this very reason I say I’ll watch the kids during clinic. We love our son's teacher aide so much. She is calm and clever, and she brings out the best in him.

We are enveloped by people who want the best for him.

We married each other again. Clung to each other. Cried in each other’s arms. Somehow became stronger. Sometimes I’m overcome with how grateful I am to have him by my side doing this with me.

Our youngest tells his brother, “I love you the most. You’re my best friend,” every day. We say “I love you” a lot. We say I love you then I love you and then I love you, I love you, I love you. We fortify ourselves against all of this with I love yous. I love you so much.

And that’s what sits alongside the part of our fridge that is just for medicine. So much love. Love that gets you up in the morning. Love that’s there in the depths of night when you’re so afraid you can feel your heart beating. Love on the days when it’s all routine. Love on the days when it’s so confusing and you just don’t know why this hasn’t worked and why did his levels do this? Love is the answer for the questions we
have. Love binds us and tells us it will get easier. Every second, minute, day, week, month – it’s love that keeps us going.

I want to tell them so much, these new mothers. If only I could say it all.

You’ll see your child anew, and they’ll astound you with their courage, their bravery, their strength. Then look at yourself – because you’re now all of these things as well.

Emily shared her story in the Winter 2020 issue of Diabetes Wellness magazine.

Subscribe to Diabetes Wellness today to receive your copy.

To read back issues, visit here.

Inspired by this story and have one of your own to share - read more here.