EWW: Sick kids and new lives

This weekend it will be one year since a diagnosis changed our lives...again.

In 2015, I wrote the words below when one of the kids was in hospital again. I can’t even remember this particular hospital trip. They all merge into one. My youngest was sick around this time too and we didn’t know if he had the same condition Eddie did.

We certainly didn’t know that in five years we’d still be going to hospital regularly. This time with a new condition.

I wrote then:

I’m in hospital with my son. We have been here all week. I have been too tired to write a coherent blog post but my brain is still a jumble of words. I have written bits and pieces over the last few days. Here are some feelings. Some things I’ve been thinking. Not particularly eloquent, but I wanted to put them out there anyway.

There are some lovely words.
Ya’aburnee is a word commonly used in Lebanon, it is Arabic, and it is difficult to translate. It is the wish that you will die before the one you love. Simply: You bury me.
Unsurprisingly, it is a sentiment that lives mostly in the hearts of mothers. I have watched my two babies fragile in their hospital beds, fighting for breath, too many times now. Each time Ya’aburnee escapes from my lips as a whisper, a fervent prayer.
It is the same every time – when my babies are at rest, their chests still straining but their eyes closed, I too close my eyes. I picture them at peace and content with loved ones, partners, children, grandchildren, friends, cuddles, kisses, travel, wine, cheese, trampolines, laughter, happy tears, celebrations. I picture them proud watching recitals, performances, gigs, shows, races – karate, swimming, guitar, ballet? I picture them at graduations, awards, writing CVs, creating art. I picture them with a faceless love by their side who brings them as much joy as their father brings me. And I imagine them saying “your Nanna used to say…” to their grown children in remembrance of me. And even though I’m gone, they’re not broken by my absence. They have their own beautiful lives now. And they look at their babies and whisper ya’aburnee.

-

If a woman’s work is never done a mother is never allowed to rest. I am told to rest. To sleep. To “have a cup of tea”. I hate tea. It tastes like dirt. I am fuelled by coffee.
I am anchored to my son’s cot. I am a lumbering ship. Slow. Not in the best condition really. But determined. I need things to be repeated, I don’t understand what the doctors say to me the first time around. I cry in private. It is too hard to rest. When I sleep it is through sheer force. My body drags me down into the ground and it’s dark and cool and then a cry launches me up. My body acts before my brain does. I am here, it’s ok, I am here. I will rest later.

-

This place is misery. Surely, there is no sadder more isolated place than the children’s ward in a hospital. Mothers rock even when their babies aren’t in their arms. Fathers have red ringed eyes. Their shoulders are tense. Their footsteps are the heaviest. Nurses are patient but parents are quick to anger. There is so much crying, screeching, babies in pain – but I think the worst cry is the lonely, desperate crying in the night of parents who just want their babies to be better. Torture is not being able to fix your baby. To not be able to hold them because of tubes and monitors and chords like delicate ropes that feel like they’re strangling you. To stand with teeth clenched, nails digging into your arms, as strangers work, speaking a language you don’t understand, too busy to translate, on your precious baby – it is some specific type of Hell. But there is so much humanity here too. The doctor who gently sings a lullaby to your baby as he tries to get a line in. The nurse who gets you a hot chocolate just because you look like you need one. The texts and tweets and calls and financial support because Heaven knows nothing is more terrifying that not being able to pay your bills when you’re in here. The man at the coffee stand who remembers your order and starts making it so you don’t have to speak through tears. The other parents who nod and say “need anything?” No energy for themselves but they are machines with one setting – to care for their babies, and anyone else who needs it right now. Because we share this Hell together.

-

I will get to leave. My baby will be ok. But some won’t. And I weep for them. Nobody should ever have to bury their child. Every time I leave hospital I have a renewed dedication to frantic, compulsory empathy and compassion for others. The world is too mean too often. We have to be kinder. Always. Gentle. Always. Because some people never get to leave here.

I’ve been thinking about previous hospital visits a lot lately. This time last year I was at home with Eddie thinking he wasn’t his usual happy self. On Saturday it will be one year since we almost lost him. Since the doctor in emergency shouted “Has he had insulin?” and I said “what for?”

He looked at me like I was crazy.

“Diabetes!”

And that’s how we found out he was Type One. I asked how do you cure it? What next? I smiled for my baby and hid in the toilets and sobbed so hard I thought I’d drown. I got gastro on the ward and had to sit my youngest next to an iPad with facetime on it while I vomited for a day. A virtual babysitter stepping in as I lost it all.

We spent a lot of time on the ward. We were desperate to go home and terrified to leave.

Then it was six months on.

And now it has been a year.

Today we try a new piece of tech. It will hopefully let off an alarm when he drops in the night so we don’t have to keep waking up every few hours to test him.

We got to leave but we never leave.

Ya’aburnee sweet Eddie. The bravest kid I know.

I want to say a special thank you to all of the paid subscribers here. You make it possible for us to ensure Eddie has a continuous glucose monitor (they’re not government funded) and you help to pay for all the times I can’t work because I’m in hospital with him. I can never thank you enough for supporting my work. Thank you. Thank you. Thank you.