'I thought I knew what grief meant. Then my husband died in bed beside me.'

Grief is a word I’ve heard so often. I always thought I understood what it meant but now I realise I had no clue.

Grief is going grocery shopping, putting something in your trolley and realising he was the only one who ate that. Grief is being in the car on a perfectly ordinary day and his favourite song coming on the radio. Grief is hearing something funny and for a spilt second thinking how you can’t wait to tell him, then remembering you can never tell him anything again. Grief is being scared that people are going to get sick of you talking about him soon. Grief is checking the mail and receiving his death certificate. Grief is watching the dogs stare at the door and not knowing if they understand that he’s never coming home. Grief is the terror of one day forgetting his voice, his laugh, and the way he looked at just me. Grief is calling the phone company to cancel his account and being told “we need to speak to him.” Grief is realising you don’t know how to empty the vacuum cleaner because that was always his job. Grief is the ache in your heart, the lump in your throat, the tears in your eyes when you think about a future without him, knowing you’re going to be OK, but wondering how.

I remember the exact moment I started grieving. Maybe it should have been less of a surprise. I did marry someone with a chronic illness, after all.

I knew the severity of cystic fibrosis from the minute Matt and I got together. That’s because I have CF, too.

That’s right. We met in the children’s hospital.

(I still cant decide if our love story is adorable or tragic. Maybe a bit of both.)

It wasn’t until years later that we got together. He’d grown up a bit and wasn’t the annoying kid I used to know. Things moved quickly and after a double lung transplant each, a wedding, a house and two dogs. Life was good.

Until it wasn’t.

Matt had shown no signs of being sick. He’d just started a new business and was so busy and I was so proud of him. Matt called me one day from work to say he was heading to hospital because he couldn’t breathe. I was a little bit worried but after a transplant you’re so immune suppressed that it’s easy to get infections. I thought he’d go to hospital, get some antibiotics and be home for dinner. Instead, that night he ended up in ICU and exactly a week later we had a meeting with the doctors. I don’t remember a lot about that meeting besides two words.

“It’s fatal.”

No. Not Matt. Not us. This happens to other people. But I guess to other people we are the other people.

How could my husband, who was full of life and fun and humour, just a week before, now be laying there with no chance of getting better? How could I have just weeks to say goodbye? Nobody could answer those questions. Nobody knew.

From the moment Matt was given his prognosis he decide he wanted to fight. His 30th birthday was only months away and he desperately wanted to get there.

Fight he did. A week turned into a month, which turned into four. At the end of February, we were told Matt would be coming home. Not because he was better, but because there was nothing more the hospital could do for him. Essentially he was coming home to die.

The time that he was home was the most difficult but the most rewarding of my life. Watching someone you love wasting away before your eyes is completely heartbreaking. But watching his grace and his dignity was completely inspiring. Matt and I spoke about all of the wonderful things we’d done together. We told each other exactly how we felt about one another. It hurts my heart when I think about how he laid in his bed and planned his funeral. But he did it with so much class. The love and the pride I felt for him was something I’d never experienced. So when, on 31 March, a month after he’d come home, he passed away in bed next to me, my heart was completely torn in two. I am so grateful we had that month. I have no doubt how he felt about me, and I know he knows I adored him. I feel so privileged to have been trusted with his life in those final days. I feel so lucky I have had a love like ours, even in a time like that.

Matt was a month shy of his 30th birthday.

I don’t want this just to be a story about grief. I want it to be about love and living life and the amazing gift Matt received of four extra years. As much as his transplant wasn’t a cure it was still undeniably life-changing. We did things we never thought possible, and it gave us hope, which is something it’s hard to have a lot of when you’re as sick as we were.

If you take anything form this please let your loved ones know your decision about if you want your organs donated. And please hug them a little tighter. And dance. The one thing Matt said when I asked what he’d change? Dance more.

So dance. And think of Matt while you’re dancing.

Please visit Donate Life and join the Australian Organ Donor Register today.

For more from Kaila, follow her on Instagram via @lovelydinosaur_