The 'Living Grief' I Carry After My Child's Diagnosis

The phone rang, it was the call we had been waiting for.

It had been years of challenging struggles with so many doctors to get this MRI done — to finally see what’s going on inside Noah’s brain. Everyone kept saying they wouldn’t find anything. My gut told me otherwise.

I picked up the phone. The doctor introduced himself and then said,

“Are you sitting down?”

It was almost comical…something you hear them say in the movies. But this was our life, and for a moment my heart stopped beating.

I sat down.

“It’s not good news I’m afraid.” He started to list the damage and I heard only parts…”brain stem… irreversible.”

He said, “He could have seven months or seven years…we just don’t know.”

Noah was 2 years old.

I discovered so many things after that call. That he shouldn’t have called me, that I should have been given the news at the hospital…so many things. But there it was. Devastating news delivered to me right in the middle of a normal day at home.

I walked back into the lounge room to be greeted by my little man.
Everything had changed, and yet nothing had altered. He wanted to play and I wanted to sob.

I did sob. For two weeks I sobbed, played, made bottles, sang songs, sobbed some more and snuggled him while he slept.

I felt like my heart was broken. Like we were now living on death row. There was no way of knowing how or when it would happen…but that the big “D” was coming.

I couldn’t name that feeling. He was right there in front of me — the same little person, but every single thing had changed.

It was grief…but he was still very much living.

“Living grief” is what I came up with to describe how I was feeling.

I went through the first four stages of grief: denial, anger, bargaining and deep sadness.

The fifth stage, acceptance, came as a choice I made and it changed our whole world for the better. I remember so clearly; it was about two weeks after the phone call. It’s vivid, so much so that I can hear myself saying this in my head to this day.

I thought, “Right, well I can’t carry on feeling this way and give him the life he deserves. So I better accept it.”

Now, I am not saying that this is what should happen, or that this is what happens for everyone, but this is what happened for me.

I made a decision, and that was to honor the life he has, whatever timeline that is, by living it with joy, acceptance and all the tears, hugs we need to get us through.

And so, that’s how we live.

Noah has a living life list, not a bucket list. The difference being, we are not waiting for the end. We are instead celebrating and living life now.

We seize every opportunity to make memories.

We make time; we don’t sweat the small stuff.

We cancel appointments to sit in the sunshine instead.

We make up stories.

We bring smiles to people (a Noah initiative), and we sing at the top our lungs in the car with the windows down in traffic to see if we can make other people laugh.

My grief is absolutely not even close to touching the grief of a parent whose child has already grown their wings. Not even close. Not a whisper of that knowing.

It’s a living grief. It comes at times you wouldn’t expect. You can be having the most amazing day…and boom. It hits you. Sometimes it floors you and sometimes you can swallow back the tears and be grateful to have this moment with them instead.

It’s a grief that hits you when someone asks your little one, “What do you want to be when you grow up?”

It’s a grief that comes unexpectedly when people talk about high schools and you have no clue if you will get there.

It’s a grief of not making long-term plans.

It’s a grief of the 100 days at kindergarten when they make them look older in their photos for fun.

We choose to live in what is. What today is. We choose to live in laughter, in joy, in the sadness when it comes, in the silliness and the absolute love that knows no bounds.

We live in the moment and we truly know each day is a gift.

Only this morning when I dropped Noah at school, and his teacher and I were discussing what’s going on this week with all the hospital things, Noah said, “Let’s just do today shall we, start there.”

How utterly perfect is that.