Back from Pitt...sigh
Home again....
The trip to Pitt was not all we had hoped. Found out that Madi's infection is still "present". Postponed any further surgery until July. Meaning, of course, no growth til then.
In the big pic, not so important....but, still, think how YOU'd like to explain to your very bright eight year old that they won't just be "tiny"...they'll be "tiny" forever.
Noticed when looking at her x-ray that a hook seemed high up...very. Asked Dr. Deeney and he said "yes", it certainly shouldn't be there.
Seems that the hook, left unhooked since removing the titanium rib, has "floated". Straight up to lodge in her shoulder blade and is nestled in her muscle tissue in her arm pit. Explains that arm pit pain and cramping in her side.
Nothing can be done about it til surgery. Doc says just "understand her pain". Irony there, I am thinking.
No gym in school for the remainder of the year. Madi may be the only child on earth that would cry over that. Says it is another way she is "different". Only can participate in "controlled" atmospheres. Have YOU ever seen an atmosphere that is full of children and "controlled"? I haven't.
Good news: Madi can swim in chlorinated water and take a bath. Being a girlie-girl, the last was very important. The first was sweet, too, since Gramps spoiled her on the way home and found a hotel with a pool so she could SWIM until she pruned and wrinkled (see pic)! Once home, she indulged in a LONG bath. Made her quite happy.
All in all, making her happy makes me happy!
The Poem
Time Stands Still 2/18/05 RMF
These are the longest mornings.
Starting in the time that should be sweet dreams
I gently wake your clinging- to- me -body
and try to let your mind stay sleepy.
The muted "NOOOO" that slides from your lips
almost breaks my heart as much as the tears that slip from those eyes
just like mine.
Pink and Yellow Blankies are stuffed into the Hello Kitty Pillow Case
along with your "specials":
BunBun, Bear and Nana CareBear.
Ellie lies at attention
Your Seargent at Arm
Ready to cradle it when the IV stings.
Cozy stays with you.
I suppose some women wear their Victoria's Secret Silk Nightshirts.
But since your first surgery at 8 months of age, this has been
Your Cozy.
Camis and pj pants I now find to be practical and comfy
and you are cozy with one nightie sleeve wrapped around your right arm
the bodice clutched to your chest
as your hand rubs the silky smell of Mommy onto your right cheek.
You whimper as we pull Pooh slippers onto your cold toes
and I long for days of toddler-hood
when my Mohawk Indian temper, the part of me I have given you and sometimes love to hate,
made this journey loud and even humorous.
When you would cling first to headboard, then to door frame,
then to car door
until I pulled and pushed you kicking, screaming, biting into the too bright lobby.
Now, Pooh swishes the feet of your seven year old self down the small hall and I rub your hair
walking slowly behind you down the twisted stairs of the Ronald McDonald house
laden with Ellie and pillow and a backpack filled with Stuff We May Need.
This sanctuary of fellow soldiers whispers with the muffled sounds of others headed to battle.
There is the lonely father reading his paper at the table, too filled with dread to sleep.
A baby cries as Mom forces its meds down its tiny throat.
A young girl suddenly old enough to be a Mother
walks blindly in the barely there light,
readying herself for the first shuttle to take her to a hospital that she fears her baby will never leave.
We have all done this.
Sat stiffly on bedside chairs,
found a place where skin is touchable and held on for dear life.
Watched screens for peaks and valleys and learned to hear beeps and blips in our troubled sleep.
Tonight, I will do this again.
Today, you will do this again.
So we enter the car in the silence of comrades, Just Us Girls.
Travel the fifteen minutes to the hospital and park in the cave for cars.
Your silent tears fall onto cozy all the way and I choke back their companions held in my almonds of eyes.
You grip my hand and we enter the lobby, enter the elevator, scuffle into battle
onto the fifth floor where they know you by sight, then by name.
Sixteen times they have held up a clipboard and recited the name I chose with so much love.
A nurse they know you like meets you.
We like her because she never pretends this is about being happy.
She knows this is about just getting it done in your world
and she plays by your rules.
I answer none of the questions they ask because you know
and talk the talk of your medical walk on your own.
Weight, height, blood pressure, temperature.
"Silly Juice" to make you sleepy after you puke most of it up.
They don't even ask if you will ride on "that bed".
They know this is our trip. Your legs straddling my waist (o how they dangle now),
your cozy-wrapped arms in a strangle hold around my neck,
Your face next to mine inhaling my repeated "You are my girl. You are the best girl.
I love you forever, I love you for always, I love you no matter what."
"To the moon and back?" you ask.
"To the moon and back" I insist.
They don't take you from me, and for that I am always grateful.
I am engulfed in a Funny Bunny suit, as dubbed by you and loved by nurses who have learned to love you.
I place you softly on the hard bed and my stride and hushed words keep pace with it
as others surround us on the way to a room with a color on the door to match the color on your wrist band.
(This you always check, you seem terrified that they will get the colors wrong
and you will get the wrong surgeon, the wrong operation).
Your Dr. Deeney is there. Tall and affable even in scrubs and mask.
Hard to believe this man with hands as big as your head will perform miracles in your tiny body.
In a voice that has become a panicked wail,
You ask that they check to see that your Sleepy Medicine is bubble gum flavored
(For you, it has become a journey of details).
They hand me the bubble of plastic that will be your sleep and I make myself do this, again.
Place mask on this loved small mirror of my face and count to ten in my sturdiest, tenderest voice.
You look so beautiful in this room of ugliness.
They let me kiss your cheek, pull cozy from your softened clutch of a grasp,
and then, someone whom I think must have a face I don't remember, leads me back to the waiting room.
Bunny suit off, garbage that it is now, I am a "regular", so no one tells me what comes next.
I go alone to the elevator, back to the fifth floor and sit in silence with noise all around me.
Time Stands Still.
Morning into noon into afternoon.
On worse than imagined days, into early evening.
Punctual visits from a too friendly nurse with meaningless "she's doing fine" reports.
Then, there is your Stilt of a Surgeon, filling the doorway with his never-tired smile.
His "she's doing fine" I believe.
They can never get me to you soon enough.
The recovery room nurses know you, too.
They know that you will wake and look for me.
They know you will do that faster than any other child in this Dante's Pit of a room.
(So much crying, screaming, vomiting, flailing about. I am sure that this is what Hell is like).
None of that from you. You point nurses to babies that need mommies
and tell the big big boy next to you that he should stop screaming, his tummy will feel better soon.
Your nurse shakes her head when she sees me, "She is amazing, again". She tells me what I know.
I place Ellie under your IV arm, wrap your cozy on the pillow next to your cheek
and find a stool for my shaking legs to fold under.
My thumb and forefinger endlessly loop in a small cursive "l" on your forehead and you somehow smile.
Your eyes close in peaceful sleep in this noise-wracked room
and all the tears I have held back on this long day spill down my cheeks.
The nurse smiles and pats my shoulder as she hands me the kleenex box.
This, too, she has seen before.
-end-
An Introduction
Madison May Draper appears, in many ways, to be a very normal eight year old girl.
She is in the third grade where she is a great student.
She loves American Girl Dolls, scrapbooking and DANCE class!!
Madi, however, is quite different than most other eight year old girls.
She has had 22 major surgeries due to severe congenital scoliosis.
(visit www.iscoliosis.com) for further medical information.
Madi is part of the Children's Hospital of Pittsburgh Titanium Rib Project under the direction of Dr. V. Deeney. Pittsburgh may be home of the SuperBowl Champs, but it isn't home to Madi...she travels about eight hours for each appointment and/or surgery. (for more information about the Titanium Rib, visit www.veptr.com).
As Madi's Mom, I feel blessed in many ways. Strange ways, perhaps, to Moms of "ordinary children" (although, I think, perhaps, I have yet to meet an "ordinary" child)!
Madi is a bundle of energy... a non-stop fighter and top notch sales gal on all accounts (from candy bars for dance company fees to girl scout cookies). She is comfortable with people of all ages and a fierce friend. She remembers everything and everyone and finds a smile inside her that shines on the outside no matter what she is feeling.
Madi wasn't supposed to run or skip or dance. She wasn't supposed to walk. She wasn't supposed to live very long.
She is full of life.
She is my life.
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