‘Over the last six months I’ve realised there are always more tears.’ In August, Emily Writes wrote about the tough months following her son’s hospitalisation and diagnosis. This is what’s happened since.
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. And 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.
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 protecter. 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.
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.
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.
And someone says “Oh I know heaps of people with that – it’s not a big deal” and someone else says “Oh my friend’s cousin’s daughter had that and they just found her dead in her bed”.
There’s a name for it: Dead in Bed syndrome. And you just think my god, that’s the best name they could come up with?
The other night he went to the zoo for a sleepover for other kids like him. His dad took him. Ever since a woman attacked me in a Facebook support group – somehow refusing to believe a columnist they hate is also a human – I avoid all of these events. But I love that they do them. I eagerly await their return so I can see his happy face, see how fortified he is by being with other children going through the same thing. My husband likes it too, and I’ve been lucky enough to make one-to-one friendships in private messages on Instagram.
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 have a turn. We carry each other. We proudly watch our children grow.
My husband and I have turned toward 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 his 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.
Join The Spinoff Members for as little as $1 to help us continue our work and cover the stories that matter. Get a free Toby Morris-designed tea towel when you contribute $80 or more over a year.
The Spinoff Daily gets you all the days' best reading in one handy package, fresh to your inbox Monday-Friday at 5pm.