Beauty and the Beast (by Lindsay)

This past Saturday we were blessed beyond belief by the members of our incredible prayer line at our church, St. Timothy Lutheran.

They wanted to do something special for our family, so they ended up purchasing tickets for us to go see the Broadway play, Beauty and the Beast, at the Cadillac Palace Theatre downtown Chicago, followed by dinner at the Rainforest Café. They also bought beautiful costumes for the kids to wear to the show, hired a limo driver (to drive our car so that we could accommodate Ella's power wheelchair), and gave us some extra spending money for the kids to buy souvenirs.

We cannot even begin to express our gratitude to the prayer line members for this truly magical day! Our entire family had such a wonderful time!! I even cried at the end of the show...Beauty and the Beast was my absolute favorite Disney movie as a child :)

The only thing that the prayer line members asked for in return was that we take lots of pictures to share...no problem!!!!

Thank you, dear prayer line members!!! We love you so much!!

The kids all dressed up and ready to go!

The kids with our wonderful limo driver, Mike Caro

Our family :)

Michael and me

Outside the Cadillac Palace Theatre

Inside the theater, enjoying a beverage before the show

Such a beautiful theater!!

The Playbill

Getting close to show time!

Quick kiss :)

The girls

Michael enjoying his beer

Almost time to start!!

Rainforest Café with their souvenirs from the show

Fun family picture :)

In the gift shop while we wait for our table

Dinner time!

Michael and me

Balloon animals!!

A Moment in Itself...(by Michael)

She sat at the bottom of the basement stairs, waiting for me to come and bring her upstairs.  As I walk each step the thoughts of what needs to be done always runs through my mind---what is she wearing, is her feed running, is her TSLO on, are her AFO's on, does she have pants, shorts, dress, what angle is she positioned in as she waits??  All these questions help prepare me for lifting her as safely, gently, and effectively as possible.  

I reach the end of the stairs and she did her little "jumpy dance" in anticipation of being whisked away.  I answered all the questions in my mind and feeling prepared and ready for the lift-off I commenced in the routine.  I squatted next to her chair and made the necessary movements to be able to scoop her up out of the wheelchair.  This "scooping" approach to moving her is basically getting my two arms under her legs at the knee and supporting her back, neck and head with the other arm as I lift.  Sometimes she'll put her arm around my neck; other times she won't.  In the end she is in a seated position in my arms...almost like a cradle position.

She stopped me, though, before I even slipped my arm under her legs.  "Pick me up like you used to. You know, from the front." she said.

"Mmmmm...I'm not so sure about that yet.  I'd hate to hurt you."  I replied.  Up until this point and since the first surgery some 9 months ago, we have been doing the "scoop".

"Mommy did it today and it was fine." she told me.

"Oh," I said, "well then let's try!"

I repositioned myself in front of her and squatted down, grabbing her around the sides.  I squeezed gently yet forcefully enough to get a good grip and counted, "One, two, three", and on three I lifted.

I held her tightly as I brought her to me and readjusted my hands and arms to give her the proper support.  I had her body right up against mine. Letting out the breath I used to pick her up smoothly I began walking up the stairs.  Lovingly her head drew toward my face and she rested her cheek on mine.  

I stopped mid-staircase.  The warmth and softness of her cheek on mine sent a wave of emotion throughout my body leaving me no choice but to hold her body even closer to mine.  She moved slightly and I could smell her hair.  I pulled her closer to me and let out a sigh of contentment.  I was holding her like I used to so many months ago.  I couldn't get enough of the feeling.

I let out an "Awww" and she said, without moving her head, "What?"

"It feel so good to have you so close" is all I could say.

She snuggled.  I took in a deep breath and thanked the Lord that I was able to hold her this way again. The trek up the stairs continued and by the time we got to where were going a tear invaded one eye and quickly made the other eye follow suit.  

Sometimes when you least expect it there comes a moment that reminds you of how blessed you are; there comes a moment that can only occur once yet last a lifetime; there comes a moment when the moment itself is all there is.

  

A Question of Pain...(by Michael)

There's a presence of trepidation that surrounds our days.  A feeling that pain will be lurking around every corner.  The expectation that everything will be all right eludes Ella.  She knows she must be carried, moved, and repositioned throughout the day and night.  She also knows that for much of her life pain has been present.  And not only present but increasing in prevalence and severity.  Naturally she expects that any movement involving another person will result in discomfort---if not full-blown pain. 

Upon the removal of her cast we experienced the deafening cries as we carried her from the examination room (where the cast was removed) to the x-ray room.  These particular x-rays required her legs to be in certain positions that would allow viewpoints that would otherwise have not been attainable while in the cast---which meant that repositioning must take place.  The doctor's office is a relatively small space within a larger building and her screams echoed through the waiting room and hallways as I carried her from one place to the other.  I wanted to put her back in the cast, get into the car, and take her home as if nothing ever happened.  I'm sure she wanted that as well.

Taking care of her now has presented us with a host of challenges.  Transferring from chair to toilet; from chair to changing table; from bed to bath and back again has been a brutal experience.  Figuring out the easiest ways to get pants on, socks on, and her TSLO (torso brace) on has come at a price paid by her discomfort.  Finding ways to ease the itching that the cast left behind; searching for ways to reassure her that the pain will subside at some point while simultaneously convincing ourselves too that indeed it will.  

SMA is a brutal disease in that it slowly, methodically, and deliberately harms its victims.  It captures the young (with the exception of Type 4 patients) and plays its cruel game (for all Types...1-4).  It challenges parents, siblings, extended family, and friends to face up to it with strength, fortitude, and courage.  It hides like a coward in the depths of the neuromuscular system yet presents itself openly to the world. Its victims are highly intelligent, amazingly resilient, admirably brave, and undeniably endearing...one cannot help but fall in love with them.

Up until now we haven't questioned the pain.  But alas, we are beginning to do so.  Can it be a combination of true pain intertwined with psychological pain?  Could it be that since Ella has felt nothing but pain for so long she has unconsciously developed an expectation of it?  How does one get into the head of an almost 6-year old and ascertain what's really happening?   And...how does one work through what they find out to be true?

Ella is amazing in that she is beginning to "work" with us to find ways to more gingerly handle her physical needs.  She makes suggestions, asks questions, and has begun to use her words rather then her raw emotions.  We have a ways to go, mind you, yet the path we are on, at this point, is a path of positive healing.

We know that there will be surgery in her future. Getting her body to align properly to optimize breathing is what our goal has been.  Hip alignment was our first step.  Doing what we can to correct the scoliosis will be our next.  And while we haven't had much conversation about scoliosis corrective surgery thus far, we do know that it lies on the horizon.  In the meantime we will continue to nurture our family...firmly standing in the belief that our love will help us to endure all that will come to pass.

A snapshot of how perseverance plays a role in Ella's care can be exemplified by the dramatic difference from one surgery to the next with her hips.  We met a rather bumpy road after the first surgery and with the love and support of so many we have traversed through the second surgery.  Our hope glimmers within our hearts that the decisions we have made thus far will benefit our Squishy.

Ella's hips after first surgery
(left hip bracket is slipping out due to many unforeseen factors)

        Ella's left hip after second surgery
(A new bracket which corrects the slippage and provides 
maximum support for proper alignment)

Time is what will reveal the fruits of our efforts and God is who will move us forward...may time move quickly and God reveal His will.