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.