Temporary life, lifelong love

A poem for our 11 month old son, recently diagnosed with a rare genetic disorder, Mucolipidosis Type 2 (ML2), which will take him from us in early adolescence. 

To those lucky enough to have healthy babies, cuddle them, kiss them, love on them and enjoy them as much as you can. 

To those unlucky parents who know they will one day soon have to say goodbye to their babies, love them with all your might, love them enough to last a million lifetimes. 

 

"Don't count the days, make the days count." 

We love you GG, in this lifetime and into the next. 

 

Slowly, realisation has set in 

Not because I want it to 

Because reality exists 

Even when I hate it 

Even when I can’t accept it 

And even more when it’s the worst thing I can imagine 

I thought having two kids would be hard 

Not because of having two under two 

Because how does your heart do it 

Split love down the middle

Share it equally 

I learnt it doesn’t 

You just grow an entirely new heart 

And both hearts grow side my side

Exponentially over time 

For months I’ve hoped 

Optimism my filter of choice 

Whatever it is

We will get through it 

We will divide 

And we will conquer

I never considered 

The end result would be only one of those 

We will divide

From one another

Because we won’t conquer 

Loving this deeply shouldn’t be allowed 

Heartbreak this strong should be cut short 

It’s unfair 

It’s soul destroying 

It’s cruel

 

How can you create a singularly unique love 

Born from your own womb 

Fed from your own body 

And somehow he’s still not mine

All of that love 

Not enough to save him 

Not enough to fix him 

Not enough to keep him 

It’s been over a month since finding out 

You, our beautiful little boy 

Will always be our beautiful little boy

Never a rowdy kid

Never a troubled teen 

Never a flailing young man 

Never a father 

Never a husband 

Never, never, never 

And it’s so goddamn unfair 

If love could save you

You’d be the healthiest child alive 

You’d walk 

You’d run

I’d will it into reality that you’d fly 

But love can’t save you 

And in your absence 

This love will undo me 

I anticipate the decimation 

Not being able to breathe

Without you

Not waking a single moment 

Without missing you

Not having a single thought  

Without your memory intercepting it 

As you lay in my arms now 

In milk drunk bliss 

I mourn losing the very sweet soul I am holding 

I’m not ready 

I never will be 

Our temporary life together 

Has to become a lifelong love 

In this life 

And the next