I thought a lot about what should be the last poem I posted for Poetry Month. Should I go with hope? accepting your lot in life? the poem about the little girl who still counts her dead siblings as alive when asked “how many are you?”, for certainly all the families that have lost their child still count them, they’re still here among us, not one forgotten by those who’ve loved them. Should it be about how happiness is a crystal ball that becomes fractured and we should be content with the pieces that we find? Because, absolutely all our families find things to be happy about…a step, getting out of the hospital, a spoken word, a conversation on the Tobii.
But, as I sit here, tired, tired of all the little things and big things that come with Rett syndrome- which medication is best, weighing the pros and cons of back surgery, going on Facebook and seeing who’s in the hospital, who’s made it home, I feel resolute. I am not going to bow my head to Rett syndrome. There are parents out there who have to be so much stronger than I to face each day and there are days when we are all at our wits end.
Our hearts are battered, we are beaten down, but each and everyone of us stands up. We are like the soldier carrying their fallen comrade across enemy lines, to safety. And we face Rett syndrome everyday, determined that it will not beat us, that we will find a way, whether it is for our children or for those to come, to make a difference.
No matter what is sewn into the tapestry of Life or written on the scroll, we are Human. We have been gifted the ability to face our fears, fight them head on, to Hope beyond all reason that adversity can be overcome, we challenge what Fate seems to have in the cards. Like Robert the Bruce and the Spider tale, we find our inspiration in the smallest things; the coward who throws away Opportunity? We pick up that sword and carry on and will one day win. We’ll beat Rett syndrome. It’s just a matter of time. And so, I’ve chosen “Invictus” Our heads may be bloodied but they remain unbowed.
Out of the night which covers me,
Black as the pit from pole to pole,
I thank whatever gods may be
For my unconquerable soul.
In the fell clutch of circumstance
I have not winced nor cried aloud.
Under the bludgeoning of chance
My head is bloody, but unbowed.
Beyond this place of wrath and tears
Looms but the Horror of the shade,
And yet the menace of the years
Finds, and shall find me, unafraid.
It matters not how strait the gate,
How charged with punishments the scroll,
I am the master of my fate:
I am the captain of my soul.
William Ernest Henley