*************************************************************************************I’m nothing like the girl I used to be
"The need to heal him is overwhelming
Beyond sense and reason.
He is not my nightmare.He is my son… I am lost in him.
… Joe has severe cerebral palsy,and if there is no cure,I want to explore his world with him.
I want to paint it brighter colors.I want to turn the music up.
I want the world to know he’s special…He gives the world unbearable intensity.He gives me insights I could never have understood without hime, and he gives me heartbreak.To separate these two responses would be impossible. He is equally beautiful and terrifying.
We’re ghosts of ourselves by the time we get here.
It is another world, this network that collects us from the mainstream.
He doesn’t reach out. He never does.…he doesn’t say or do anything,… nothing to work with, that there’s “no initiative”.
I want to know my son.I yearn for something to believe in.
This sadness still swallows me whole as the moon.
He has a will
WHERE DID YOU FIND THE WINGS TO FLY?
He complains he can’t get a look in,and just can’t reach me anymore.
Love revolves around…signs of a past life that has lost all meaning.
Today I feel so lucky to hold Joe in my arms,and feel his heartbeat next to mine.
He feels my love.
My arms move for him, my eyes see for him; I bring the world to him.When I’m despairing, I always turn to him,to what I can touch and hold.
We are one. Quite inseparable.
We’ve lost an intimacy, Alex and I. We’re out of balance. He says I’ve disappeared into a world that he can’t access and that I only think of Joe these days. He says he feels left out, as if he’s running ahead or falling behind, as if we’re journeying without him. Alex says there’s no love anymore,no love life.…wonder how I ever got to war with my world … life’s a bitch!
Others say God chooses special parents for special children. Alex laughs when he hears this one. He says he still remembers his press trip to the orphanages in Minsk, where thousands of special children lay abandoned in iron cots, staring at the ceiling all day long.
We share one heart; we share one will. And sometimes we’re such separated souls
nothing worse than being with someone you love and watching the distance grow between you.…somewhere in the process we have shrunk ourselves. It’s too late to piece back together what is falling apart. Perhaps I don’t want to deep down. Perhaps there just isn’t the time.…like we’d been given “a life sentence”, with no explanation of what we’d done to deserve it.
ordinary days, the most extraordinary things can happen.…I need to find myself again.…it might help to write…
I don’t know if Sian knows what it means to me when I see the way she talks and plays with Joe, and when the sound of their laughter reaches me as I’m lying quietly listening, on my bed
…it’s amazing what hard work, love and faith can bring …it’s so important to appreciate what we have, while we still have it
I need to join the world again.
It is what I would have wanted for him had we been normal, and it is what, after countless sleepless nights, I still want for him now.
He is accepted....And to me it is enough. They don’t know him like I do. It’s the little things that make wonder. Sometimes I wonder if this happy child,that smiles and giggles by my side,might also want to die one day.Sometimes I wonder if the time just comes when it seems easier that way.
The world’s a topsy-turvy place,and despite all his best intentions,Superman still can’t move a muscle
it’s more important to be loved, than cured.
…one less barrier, one less thing to fight against.I am beyond the staring now.
Today I discovered that fear comes second to love.
The experts don’t see Joe like I do.…they don’t appear to listen to a word I say. nothing’s black and white,that kids can’t really be defined,and I’ve learned to take,one daybreak,at a time.
It’s hard to consider what is “necessary and adequate” for any human being.Especially my child. His is the life that sustains me,the blood that stops me growing old,his is the hand that when I die,I’ll want to hold.He’ll always deserve better.
The physical separation has a unique numbness to it.We can’t complete each other anymore.
I can’t stand the fact that I can’t heal him.
My whole world has cerebral palsy, wheather I am with Joe,or not.I’ll never give up……my heart’s become a warrior’s shield……I grow enough to know,that life is what we make it,with a child like Joe.…
when it was silver and nothing was broken,and there are times, just for moments, when silver turns gold.Life feels good enough to celebrate,exactly as it is.…I have arrived at a place called Acceptance.…life is reaffirmed. Generally the bad days don’t floor me like they used to.“Your lucky”, I say, “because you have two that love you, and to be loved is better than anything.”
For all life’s tragedies,I still believe in miracles.It’s him that gives me strength to fight for him forever,and the strength to claim my life back.…changed the way we see things… He’s changed the way we think and the kind of places we find meaning.…changed the way we grow.…we feel things more deeply……an inspiration…I have learned…never to underestimate children.I see that all kids are different,I see that all kids are special.Because sometimes, even if just for a moment,I wish you could imagine what it’s life for me.Just for a moment I’d like you to know,that within the shadow,there is a constant interference of light.…I wonder at how much he’s changed me, and the ways I’m so much stronger than I ever was before.…I appreciate far more.
If, without him, I’d ever have confronted life,and cared and fought for anything the way I have for him.
If I could have ever learned
all I’ve learned through my heartbreak…
Standing here a thousand things can cross my mind.
My heart has reshaped a thousand broken pieces,and for every moment I still want to heal him
there are a thousand when I know he’s perfect,
exactly as he is.
The most profoundly beautiful, and exquisite, moments I’ve ever had have been those I’ve spent with Joe.
…that my life is as big and as close as life gets,
and that I am truly,
We are still the proudest parents in the world!