I've spent some time reading new blogs this week, new amazing challenges, families facing what seems to be the impossible. The fight between life and death for a child that is a reality for many of us. You question sometimes is it better to put it all out there, to expose yourself in your most hurt, dark and painful moments. How will our words be taken? Will they be digested and dissected into a million pieces? Will we find words and comments of comfort or face heavy criticisms? Will our words be twisted and used against us? Are we better off remaining silent? Are we even helping the world at all by sharing our lives, exposed and raw? We network with other parents, talk to others that have children similar in special needs and conditions. We hope to give hope and inspiration to those sitting on the sidelines, serving as example that you too can rise above some really difficult times, to demonstrate there is such beauty underneath a child that cannot speak, or walk, or sit. At the same time we do crave and need a certain amount of support to get through the day. And some days we're a bit easier to knock down than maybe the next person. But we continue to get up and dust ourselves off regardless and move on because we know in the end we're advocating for the most precious things in our lives.
I stumbled on this poem titled a Litany for Survival in touring a blog. I've read it four times now, including this post. Thought about it, considered it, and it spoke to me in a different way each time. Like this layered message. I am one that can no longer indulge in the passing of dreams of choice. It took only one life altering event, and I feel robbed of them. Like they were stolen without warning. My dreams are no longer my own, they exist only for Noah. I do reside and live with fears. Many of them. Fears for the future, fears for safety and quality of Noah's life, fears that the world will be unkind to him or us as a family, fears that someone will stumble across my blog and dissect into a million pieces when it's intent was just merely to offer support to others, describe what our life is now like, and share with the world this beautiful blue-eyed little boy that survived against the odds. But as the poem suggests:
"and when we speak we are afraid
our words will not be heard
nor welcomed
but when we are silent
we are still afraid
So it is better to speak
remembering
we were never meant to survive"
It is better to speak, and not be silent. As special needs parent, I don't want to close that door. I want everyone to know what this is like, I want to share Noah's story, for better or for worse, I want to offer hope, or let you share in our sadness or joy. There are so many beautiful blogs out there filled with inspiration, hope, love and faith. And most importantly God. Regardless of the scrutiny the medium of a blog offers, the fears that somehow your words will be taken sideways or backwards, or misunderstood. I commend all that are brave enough to do it. That put themselves out there to suffer any potential scrutiny. We make ourselves vulnerable and find ways of such expression that only we can bring in sharing special needs with others in the community. We should not be silent, for most of us we are our children's only voices. Their journeys deserve to be told. Our lives shouldn't be hidden in the closet like a disease trying to be contained. God would indeed want us to share our special children with whomever came across our blogs. There could be someone out there needing a message in something they read in a blog. Whether that be advice, help, support, or information on equipment or therapies. That is what it should be all about. Don't be afraid to write, don't remain silent, our children are counting us to be that voice.
A LITANY FOR SURVIVAL
For those of us who live at the shoreline
standing upon the constant edges of decision
crucial and alone
for those of us who cannot indulge
the passing dreams of choice
who love in doorways coming and going
in the hours between dawns
looking inward and outward
at once before and after
seeking a now that can breed
futures
like bread in our children's mouths
so their dreams will not reflect
the death of ours:
For those of us
who were imprinted with fear
like a faint line in the center of our foreheads
learning to be afraid with our mother's milk
for by this weapon
this illusion of some safety to be found
the heavy-footed hoped to silence us
For all of us
this instant and this triumph
We were never meant to survive.
And when the sun rises we are afraid
it might not remain
when the sun sets we are afraid
it might not rise in the morning
when our stomachs are full we are afraid
of indigestion
when our stomachs are empty we are afraid
we may never eat again
when we are loved we are afraid
love will vanish
when we are alone we are afraid
love will never return
and when we speak we are afraid
our words will not be heard
nor welcomed
but when we are silent
we are still afraid
So it is better to speak
remembering
we were never meant to survive
- Audre Lorde, The Black Unicorn
Love,
Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.
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