I am you, and you are me

Full of Life has often been described by parents as an extended family, a safe place where families can share in their journey with others who have an unspoken understanding, who have walked that path and felt the highs and lows.

This poem written by Morgan Turpin, a mother of a child with Dravet Syndrome, encapsulates the unique bond that mothers (and fathers) who have a child with additional needs share. The strength, courage and sheer determination that drives us as parents to fight for the best for our children, even when our backs are against the wall and all we feel is fear and frustration. So here’s to you, the parents, on an incredible journey with your warriors, please remember, you are not alone.

“Mama’s We’re in this Together”

The world we live in can feel so lonely

But I’m here to tell you that you aren’t the only

Mama who feels this way, you see,

For I am you, and you are me

In that awful moment when you got the news

I’ve been there too, I’ve walked in your shoes

As you wondered and feared what their life would be

But they told you only in time will you see

When the online searches paint a picture so grim

I’ve read the words, I’ve felt them sink in

When all you want to do is scream

Or somehow wake up from this awful dream

When you can’t sleep with all the words that you’ve read

Swirling on repeat inside of your head

As you think “no this can’t possibly be”

“not my baby, this can’t happen to me”

Time seems to stand still, like everything has changed

The whole world feels so different with the news you have gained

The dreams and the hopes that you had, gone away

Consumed with feelings of mourning, all night and all day…

And then when you somehow muster the strength

To put up a fight, to go any length

“Things will be different for him”, you pray

He will beat the odds, we will find a way

That hope is a force that is guiding you through

This I know, you see, ‘cause I’ve felt it too

And I have also felt that hope crumble and fall

With each failed treatment, each time you get “the call”

The monster shows up, and says “I’m still here”

And once again, you sink back into fear

I have lived through those highs, I have lived through those lows

I know how this roller coaster goes…

Sometimes tears fall with joy from a new milestone

Or sometimes from pain, feeling so alone

Feeling like your life is passing you by

Watching him suffer, not understanding why

Feeling like everything is a fight,

But vowing to advocate with all of your might

They will not win, I’ll make them see

Just how important this child is to me

You push for services, to help them grow

You don’t take it for an answer, when they tell you “no”

You summon a strength you didn’t know existed

Eventually you’ll win, because you persisted

Then you rally for the next battle to be won

Because, you see, your work is never done

Each night when you finally lay down in bed

A million thoughts are going through your head

Those feelings of guilt that live within you

“Am I doing enough?” I live with them too

Wanting the best life can offer for this little boy

Hoping he feels love, hoping he has joy

And those feelings most don’t talk about, when you want to give up

When you have lost your fight, when you throw your hands up

When you say “there’s not much more I can take, I feel as if my heart might actually break”

But then, you gaze into your child’s eyes

And all of a sudden you realize

That they are the strongest person you’ve ever met

And you will spend your life fighting for them, you aren’t done yet

Those feelings you feel, I’ve felt them too

You are me, and I am you

We are both in this together, you see

Our tribe of mums is as strong as can be

I want to leave some advice for you

You are stronger than you know, this is true

You will never be alone in this world, you see

For I am you, and you are me.

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