alone we are rare, together we are strong

 i know these eyes...

the eyes of mother love.  a frozen snapshot of adoration.

a playful peek a boo moment encompassing her small daughter.

perhaps her husband is on the other side of the camera

and the smile i sense, but cannot see, is for him.

the look of love and utter acceptance,  

is for the small child.

i know.

i know

the compelling love

of a mother for her child.

 i have one son and i will look at him

with the same undying affection forever and a day. 

it might be sunday, certainly summer.

perhaps the sun is angling down down down

on this forever sepia moment.

if you look closer, closer still......

you may notice behind the cheery gingham pillow

 the mother deftly rights the child.

secures her place in the spindle backed chair.

i know the child.

the bend of her fragile neck.

the lifeless turned out feet that hang like a rag doll.

i know the disconnect.......the inability to feel the life

that courses down those helpless arms so that her impossibly small hands

are pinned on like mittens hanging from bright yarn,

swinging free around the neck of winter.

i know.

i know

because when i sleep at night

my bones cave in on themselves.

when daytime's buoyant hopes give way to darker dreams,

without gravity and reason, they collide.

i know the sounds of labored breathing,

the marathon attempts to wrench my body over,

like a set of crashing waves, forever breaking on my scattered night. 

i know i wake up each morning exhausted

and carefully walk in the cold pre dawn while the world

sleeps in their perfect bodies.

  to labor beneath a star punched sky until, finally,

fragile muscles consent to untangle

the bones of night. 

i know that i live in a body racked with pain

and when i walk into a room i find a way so seamlessly gracious,

to be last,

so you will not notice my awkward gait.

and why i so passionately put things together.

countless discarded pieces of china and glass

that once held the very voices of the families they served.

together,

in my eternal quest to keep my hand in the honey pot of

beauty and wholeness

as my body falls to ruin with each passing day.

that i teach with a fever pitch passion to secure a future

 where my artistic knowledge and skills live on

in the hands of others.

why i live each moment in wonder with the same compelling adoration,

undying affection and genuine fascination

 a mother carries for her child.

and why it is so intoxicatedly liberating

to write these words

to leave behind

the shallow fantasy that this blog was a safe haven

where i could beat this disease

and its ugly grip on daily life by not allowing it to breathe,

here, among us.

i know

the sepia relative above loved a child

that died in a handful of months as she watched helplessly

and never knew why.

and though enough years have past that our family has long forgotten their names,

 i know

the name of the disease that robbed them of sweet life. 

pompes

a rare genetic fatal disease identified in less than 10,000 people in the world,

of which you now know one.

today is rare disease awareness day.

alone we are rare, together

we are strong.

 

 

Comments

[deb @ talk at the table]

oh, Rebecca.

I want to say something profound.
But I don't want to leave and return .
I want to stay.
Maybe not saying anything, just listening, being here.

I wish I could wish away your pain.

you are so incredibly beautiful.

and that photo is both joy and heartbreak.

[Allegra Smith]

If love is the cure, you must be whole now.

[Sue fox]

And I am all the more stronger for knowing you,the beautiful yet painful reading of your words tears at my heartstrings.

Ours is the rare privilege to have come into the presence of such a gifted being, through your great awareness that this place of giving on-line would reach to far flung lands with a strong voice of love and hope.

If only we could cushion you so the pain was less, any way we can support you we are here!

Love Sue x

[Elizabeth]

I remember when you first posted that amazing photo -- and your words. Your words, your words, your words.

I wish I could wish away your pain. You are so beautiful and transcendent.

[Miss Robyn]

YOU are beautiful. I love you.

in awe of you and all I want to do is hug you so tight. xoxo

I love this photo. of Rebecca. my friend. xo

[deb taylor]

I am crying, holding, breathing all of you. Wishing, wanting, hoping. Rebecca...my admiration and respect for you is impossibly unmeasurable. You are so brave to share this with us here. Now. Forever. We are all changed because of you, some in small ways, others profoundly immense. You,my friend are rare and beautiful. And this photo radiates the pure delightful essence of you. I love you.

[lyle baxter]

I cant imagine what torture you go thru, but I am thankful for all the gifts you have to share with us . please pretend that you can take my hand! I am reaching out for you across miles . thank you for being there!

[Dawn Elliott]

Rebecca,
You have an eloquence...in your writing, your spoken words, and your daily life that seems so effortfless. Today you've allowed us us peek into your personal reality...to feel your anguish, as well as your strength and hope. This is absolutely wrenching, yet also beautiful beyond words.

You are the perfect person to champion the awareness of Pompes Disease, and share with the world the daily struggle and toll it takes on so many innocent lives.

[Ms. Moon]

Your spirit has been honed to knife-steel sharpness, I see it in your face. It has been lit with glory hallelujah- I see that too. It has been polished like rocks in a running river.
Rebecca. Of course you have a rare disease. There is no one like you. The world couldn't handle too many of you. It would explode with the beauty.

[Meri @ Meri's Musings and Playing Along]

Here's the truth: I can't take away your physical pain or your body's betrayal. I can't give you a hundred years' more time. But when I see you, I don't see a woman with an awkward gait. I see total grace-fulness. A beautiful spirit. Creativity and compassion oozing from every pore. You are a rare woman, indeed.

[Kim andersen]

Your blog is not a shallow fantasy and never has been. There are layers to all of us, and you have peeled back another one of your own layers with words that are achingly honest. and once again, you lead the way for us to reveal more of ourselves. Thank you for your generosity of heart and self ..... And may mercy and grace dog your every footstep, as weary as they may be, all the days of your life. Every single one. Bless.

[Fran aka Redondowriter]

Ah, Rebecca, I read your post with tears in my eyes over what you deal with on a daily basis and for the beautiful photo of you. I have so often wondered what you looked like and what your disease was. I am unfamiliar with Pompes although very familiar with Parkinsons and Lou Gehrig's. Is Pompes similar?

All I know is that in the short time I have "known you," you have caused a very positive effect on my life. I love your words and your photos, your way of thinking.

I'm home now from the Holy Land so will be by to visit from time to time. I have many new photos of Mary in her variations to ultimately share.

[Margaret Pangert]

Dear Rebecca, Your photograph is so beautiful; you look so slim and chic like the Parisiennes. I was thinking that was you in the above photo holding the child: the eyes are so mischievous, playful. Your rare disease sounds something akin to MS, the muscles and nerves breaking down in stages. It seems so unfair as you are such a lovely, kind, creative person. But your gifts are something no one can take away: your writing, your seeing the beauty in the world, your abiltiy to connect with others. You are now and forever in my prayers. Love and blessings, Margaret

[jenny]

Oh shit, oh dear, rare disease, rare bird that you are, written so beautifully, whoa.
Thank you for sharing this even as hard as it must be. Strong spirit comes in handy and you have it.

[Stephanie]

You are rare indeed. You open your eyes to how unfair the world can be.

Yet, you continue in your strength and fight

and we are there to hold you.

x..x

[Leslie]

beautiful beautiful YOU. rare in more ways than one (and we could easily live without that one, couldn't we?)

[Kim Mailhot]

Oh Magnificent One ! Brave champion of hope and beauty ! No shallow fantasy but a place where all of your strength and love of live float easily in light and love.
Thank you for honoring us with the knowledge of all that you live with every day.
You have become all the more beautiful in my heart.
Light and love, Beautiful Rebecca.

[Sarah]

Oh Rebecca, I was so moved as I read this and am now, if it is possible, even more in admiration of you-your beauty, eloquence, kindness and caring towards all you meet, in the face of this condition. The photo of the poor mother and baby is the saddest thing I have ever seen and yet there is so much love there I could look at it again and again. I am so glad to know you.
xx

[noelle clearwater]

The Well of Grief

Those who will not slip beneath
the still surface on the well of grief

turning down to its black water
to the place that we can not breathe

will never know
the source from which we drink
the secret water cold and clear

nor find in the darkness
the small gold coins
thrown by those who wished for something else

~ David Whyte ~

I love you Rebecca. I am always holding you in the light. I offer you my deepest compassion and the hand of true friendship. Your courage and your beauty, your open heart, your sensitivity to others and your love for the beautiful sustain you.even on the darkest of nights, and these same qualities are a beacon to others. You are cherished and always will be.
Love to you,
Noelle

[rochambeau]

I so appreciate calling you friend Rebecca. Always your words are well put, but particularly so in this post. It is an honor to know one of the 10,000 people living with Pompes. In our world you are one of the especially special shining stars.
May grace continue to be yours. May your light to shine forth. May you sleep tonight and wake pain free. You are a miracle.

Love,
Constance

[gemma]

How blessed we are to know you. Quiet angels offer many prayers.

[Magical Mystical Teacher]

Soon I will be lost,
not able to find my way—
still I keep singing.

[Cinda Rae Oliverio]

((((((Sweet Rebecca))))) always in my prayers

[Boonie]

“The marathon attempts to wrench my body over, like a set of crashing waves, forever breaking on my scattered night” – I know that person too.

Take care my friend, Boonie