Fragile Determination...(by Michael)

We once again embark on a path with our Ella that keeps me standing in contemplative wonder.  She has kept her food where it belongs for a good month now.  She hasn't, however, gained any weight.

Her nutritionist and Lindsay sat down this week and put together a plan.  We have to change her feeding routine in an attempt to get her to eat more food orally.  Within the past month she has shown in increased interest in table food...the plan is to modify her schedule of feeding tube feeds to allow her to be more hungry during the day and in turn, we hope, she will take more food by mouth.

Worth a try anyway.

Contemplative wonder.

I routinely find myself contemplating deeply about Ella.  I contemplate about her disease.  I contemplate about her fate.  I contemplate about what's happening inside of her body.  I contemplate about what it must be like to be her.  I contemplate about what I can do to help our little girl.  I contemplate about what has happened thus far. 

Amidst the contemplation streams in the wonder.  Not the kind of wonder that keeps one guessing; the other kind of wonder...the awe.

I am in wonder how a soul as gentle as hers has found its way to us.  I am in wonder about how God has allowed this disease into her body while at the same time He's given her so much. I am in wonder at how quickly things can change, for better or worse.  I am in wonder that she strives to do all she can despite her SMA.  I am in wonder at how full of life she really is.  I am in wonder at all those who surround us support us in so many different ways.  I am in wonder that our family has been through so much in such a short time.

Beside the contemplative wonder I must say that I am fortunate enough to witness the spirit of the human soul in Ella.  She is determined.

Despite her fragile state she remains determined. 

Despite her challenges she remains determined.

Despite her SMA, she remains determined.

Watch the video below.  Watch is several times.  Imagine the struggle her body must be going through.  Push the wheelchair with her.  Feel the weight of gravity pulling your shoulders down with each stroke.  Take hold of the goal she has in mind.  Allow yourself to breathe as she does with each stroke of her arms on the wheels.  

Fall in love with her triumph.

New Braces (by Lindsay)

Today I took Ella to pick up two new braces that have been custom made for her...her TLSO (Thoracic Lumbar Sacral Orthotic) and her KAFOs (Knee Ankle Foot Orthotics).

The TLSO is a back brace that will help to keep her spine in a straight position, as she is already developing scoliosis.  We will ease her into wearing it, as it is a little bulky and will take some getting used to.  But in about 10 days, she will be wearing it for most of her waking hours.

The KAFOs are leg braces to help her with standing.  Once they are on, the knees can lock, providing her with the extra support she needs to bear weight.  She still bends at the hips very easily, so it helps if she is up against a wall (we can pull a small table up to her there).  

Below are some pictures showing what Ella's posture is like with and without the TLSO as well as a couple pictures of her standing with the KAFOs...

Putting the TLSO on for the first time

It fits!

In her wheelchair without the TLSO

In her wheelchair wearing the TLSO

Sitting on the floor without the TLSO

Sitting on the floor wearing the TLSO

Back view without the TLSO

Back view wearing the TLSO

Standing at the table with her KAFOs (she could do this for about 3 seconds)

My favorite...seeing our Squishy standing so tall all by herself!!

Helping Hands (by Michael & Lindsay)

The three of them used to fit so easily into a picture.  We could sit them side by side and still get the surrounding items in the picture if we wanted to.  

They're getting bigger; they're getting taller; they're getting heavier; they're doing what kids do so naturally...they're growing.

While this is a welcomed phenomenon as we fully expected the children we had to grow, we didn't plan for one of them to require specialized equipment, let alone, specialized living arrangements.  

We began our child rearing days with the idea that our current house would act as a stepping stone to a larger house that could accommodate the three children we planned on having.   After Henry was born we were beginning to realize that maybe we might have to stay in this house, what with the economy the way it was heading and the fact that there was only one income paying the bills.  We did, however, keep it in the backs of our minds that we might still move.  Our third child was on her way and the prospect of finding a house with four bedrooms entered the scene again.

Fifteen months after Ella arrived the idea of moving was completely obliterated by SMA.  When we received that diagnosis for Ella our worlds were thrown in so many directions, all pulling us with equal force.

One year has passed since the diagnosis.  And as kids will do they have grown.  

Normally this wouldn't present much concern.  We have Ella in her own room and Ava and Henry share a room.  If Ella didn't have SMA, Henry probably would've had the solo room and the girls would be sharing.  Because of the equipment Ella needs the solo room must be hers.

The problem that faces us from the not too distant future is one of accessibility.  While we can still carry Ella up and down the stairs, she is becoming heavier, longer, and most importantly, more fragile.  As she grows she not only loses muscle function but her bones do not gain the density necessary to withstand normal pressure placed on them.  Scoliosis has begun to set in and that causes pain, discomfort, and precarious situations while being moved.   At some point she will have to be in her power chair for pretty much all her waking hours.  

Our house, in its current state, will not be able to accommodate her needs.

We've always known our choices:

• Find a house that we can modify
• Build a whole new house
• Modify our current house

We're starting to have to think about this decision more seriously because we feel this is something that cannot wait until we "cross that bridge" to tackle; for by the time we get to that "bridge", we will need something in place for Ella.  

We've had many people ask how they can donate money to help with the added expense associated with caring for Ella.  In response, we have created a donation website that will allow anyone to make a monetary donation that will go towards Ella's immediate and long term needs.

Each day that we live with Ella we find out more about what it means to roll with the changes...as she grows we must constantly change how we parent.  Knowing we have the love and support of so many people really helps us to be the best parents we can be to all three of our kids.

You may visit our donation site using the following link:

Donate to Ella's Needs

We've created a new "Helping Hands" page that also directs you to donation opportunities for SMA research as well as Ella's personal needs.

Thank you...

Michael, Lindsay, Ava, Henry & Ella

Her Place...(by Michael)

She ponders her environment.

She seeks out meaning from what she cannot do.

She watches other kids as they run.  As they jump.  As they play...free in their bodies to fly through space on monkey bars.  Free in their bodies to jump from heights that exhilarate them.  Free in their bodies to pull, push, slide, and maneuver themselves up, through, down, and around the equipment.

I felt self-conscious for her.

I felt a bit awkward for her.  

I felt alone in a large crowd of parents and their kids.

We found our way over to the baby swings located in the middle of the large playground.  Once Ella spied the swings she ramped up her power wheelchair to full speed in the wood chips and found herself there.  At last.  Her place...

Her place, where she can feel her body as free from gravity for moments at a time.   Her place, where she can experience the heights that often elude her; finding exhilaration in the experience.  Her place, where she travels through space gathering the sensory input she so desperately needs and seeks.

As I pushed her on the swing and saw her beautiful smile emerge with each "back-and-forth" the self-conscious feelings escaped; the awkwardness disappeared; the loneliness dissipated.

Her power chair sat idly next to the swingset, ready to take her when she needed it.  For the time being, though, she was flying free.  

I wondered how the Ranchview Community will embrace our Ella when she finds herself attending school there.  I wondered what her life will be like in school.  From what I gathered at the "start-of-the-year Ice Cream Social" she will be in a place that will take her in with open arms and loving hearts. 

Recovering from "ED" (by Lindsay)

I know some of you have been curious about how my recovery with the eating disorder (a.k.a. ED) has been going.  

I think the best way to put it is to say...it's been a process.  

I've been out of treatment for about 6 weeks now and there have been many ups and downs.  And then some more ups and downs.  

Since being discharged from the eating disorder program at Linden Oaks, I've been seeing both a dietitian and therapist weekly.  At one of my therapy sessions, my therapist told me that it is going to be very difficult for me to recover from my eating disorder.

Huh?

Yup.

And here's why...while ED is considered a "life-threatening" disorder, unfortunately there are many positive aspects that make it so challenging to break free.  I know what you're probably thinking...How can starving yourself have ANY positive aspects???

Well, here are the conclusions that I (along with my treatment team) have come up with (it's important to determine the positive aspects of ED in order to find new healthy ways to achieve the same outcome):

• ED is a coping mechanism for the diagnosis of SMA - there is a lot of emotional pain that came with the diagnosis, so I created a different kind of pain to deal with instead.
• ED is a distraction from SMA - having an eating disorder is like an addiction or obsession, it truly takes over your life and you have little mental energy left to focus on anything else.
• ED gave me control (or so I thought) - I felt very out of control with Ella's diagnosis, so I created something that I COULD control (until ED started to control ME).
• There were positive results that I could measure with a scale
• I felt like my identity became "Mother of a daughter with SMA" so I created a new identity for myself.

So my therapist said that in a sense, I need ED.  I need him to get through the days of living with SMA.  

And an eating disorder works in such a way that all of those health risks seem to be pushed to the background.  Those things could never happen to ME, right?  Wrong.

Going into treatment was extremely difficult for me.  I didn't want to give up ED.  I knew there was a problem and that my health was in jeopardy, but I wasn't ready to let it go. 

After four weeks of treatment, I honestly didn't feel much different about letting go of ED.  But I DID break the cycle of unhealthy eating patterns, which was the most important thing to do.

Unfortunately, as time went on, I found myself slipping back into my old habits, trying to lose the weight I had gained.  I have developed this extremely intense fear of gaining weight.

My treatment team had started threatening me with going back into treatment, which is not an option for me.  I kept trying to convince them that I need to lose "just a little more weight", to which they replied, "It will NEVER be enough.  You'll NEVER be satisfied.  You have to trust US and follow your meal plan."  Even though my therapist said that on some level I need ED, she said we need to figure out other things that I can do to replace ED.

They also pointed out how distorted my body image has become.  My therapist had me take a long piece of string and make a circle with it on the floor.  It had to be the size that I think my waist is around.  After I did it, she took that same string and put it around my waist.  The string I measured out was 20 inches LONGER than my actual waist.  That was pretty eye opening for me to see that I have a very distorted view of my body at this point.

Well, I was still losing a little weight (intentionally), and I started noticing my energy levels were dropping again.  And I was feeling depressed.  So after my therapy session last Monday night I made the decision.  I'm going to follow my meal plan in it's entirety for one week (the most I've done since being out of treatment is four days in a row).  

Right now I'm almost done with day six.

And I feel incredible.  

My energy is back and I'm trying not to completely freak out about the weight gain.  The hardest part of the gain is that initially it ALL goes to my stomach (the WORST possible place).  The reason for this is when your body has been denied food for a long enough period of time and then you start to feed it again, the weight goes to protect your major organs.  It will eventually evenly redistribute in about 6-9 months, but until then, I'm kinda rocking the pregnant look :-/

But I'm really proud of myself for where I am right now.  It hasn't been easy.  In fact, it's been incredibly difficult.  But I'm starting to notice aspects of life that are becoming easier as I eat healthier.  And I'm starting to see that I'm not defined by my body.  It's OK to be a healthy weight instead of underweight.  It's OK to have some curves.  Actually, it's not just OK, it's much better :)  

So that's where I am now.  I'm not yet "recovered" and I'm sure it will be a while before I can say that about myself.  But I can say with conviction that I AM "recovering".

"Davids"...(by Michael)

Ella can be very shy.  Like any two-year old she likes to know the people in her life.  

Over the course of the summer we have been in contact with a non-profit organization called, "Normal Moments".   This is a family based business run in Naperville that finds volunteers to assist families in need.

The founder of Normal Moments is a mother.  Her daughter battled cancer for a few years and in that time their family received an abundance of help from family, friends, and the community.  In particular there was a friend named David.  He was the type of person who would be at their doorstep at the drop of a hat.  He did everything for them from lending a sympathetic ear while reserving all judgements to watching their house and pets.  He was instrumental in their survival during the hardest times of their lives...and he was always, always there for them.

Sadly, the daughter passed away from the cancer.  Her mother decided to reach out and give back to the community.  She developed Normal Moments and finds volunteers to help families in need.  She calls her volunteers, "Davids".

Our volunteer is a young woman named Erin.  She is regarded as one of the most reliable, capable "Davids" that Normal Moments has ever had.  We met Erin last week and set up a time for her to come and get to know Ava, Henry, and (especially) Ella.  A week after our initial visit, Erin was back at our house getting an "Ella Crash Course".

We showed Erin how to hold Ella and how to get her in and out of her wheelchair.  We had her place Ella in her swing and carry her around as we gave her a tour of the house.  We spent time talking with her, letting her get to know our kids, and planning how she will be able to help us.  

Yes, Ella was very shy at first as per usual.  She did, however, take a shining to Erin and a relationship, that we hope blossoms, has begun.

We find ourselves very fortunate to have found Normal Moments and their prized "David", Erin.  

Once again, we are amazed at how we are surrounded by people who truly want to help as they can.

Once again, despite how SMA tends to drag us backwards in so many ways we are making efforts to move forward in this way.

Once again, we fight the war that SMA has thrust upon us...and in this battle, our forces are now increased not only by one whose name is Erin, but by all those who volunteer and support Normal Moments.

Please watch the "Normal Moments" video...

Where Do We Begin? (by Michael & Lindsay)

Ella Sabine Casten
August 12, 2012
Diagnosed with SMA Type 2 (August 12, 2011)

We looked at each other and said, "Now what do we do?"

"Summer of 2011"

Today, August 12, 2012, marks the one year anniversary of Ella's diagnosis of Spinal Muscular Atrophy Type 2.  A progressive, degenerative, neuromuscular, terminal disease.  

No treatments.
No cure.

The past year has brought with it much--to say the least.  To look back over the past 365 days and nights is difficult yet necessary.  It promotes growth and helps us to embrace healing.

There are so many aspects of our lives that changed in light of the SMA diagnosis.  Where to begin?  The one place that holds all of the answers...

God.  
From the moment we knew that Ella had this disease--to this very day--we have turned to and away from God.  Our faith has been shaken.  At times we fearfully and humbly approach our Creator in search of comfort; answers; guidance.  At times we turn away from The Almighty in anger; despair; loneliness.  We do believe, however, that in His wisdom lies the path we must follow and in His grace, compassion, and love for us we must trust.  

Now where?
The dreams, the expectations, and the future that has changed...
We were just like any other couple starting a family.  The past year has shown us without a doubt that "life is what happens when you are busy planning it"...in other words, we just never know what will happen...ever.  There was the expectation that our kids would grow and become independent.  We now face a lifetime of caring for our youngest on a level that we never expected.  The way we set up our lives; emotionally, financially, and otherwise has now been altered dramatically.  

And...?
The day-to-day of caring for our family...
Exhausting is an understatement.  Quite honestly, we sometimes do not want to go to bed because we know that the next day will bring more of the same.   Watching Ella suffer on a daily basis; watching her as she loses skills or struggles to drink water; hearing her cry because her head has flopped backwards and she hasn't the strength to right herself.  Having to adjust every so often for the atrophy and strength loss she encounters.  Trying to find ways to accomodate her needs only to have them change suddenly.  Waking throughout the night worrying about her survival, our survival.  Watching her sleep and seeing her body twitch, not from dreams, but from the disease that is claiming her life.  Making attempts to give Ava and Henry the quality attention they so much deserve yet often do not get from us....and worrying about them.  All of them.  Constantly.  

Which leads us to...?
Ourselves...
The toll that comes from having a child with a terminal illness is suffocating on many levels.  Most markedly on an emotional level.  We have armed ourselves with defenses to avoid thinking about what a terminal illness really means yet the armor is penetrable.  When our guard is let down the sinking feeling in our stomachs then fill our whole body.  Sometimes it makes one feel dizzy, light-headed in a way.  Often times we have to remind each other to take a break, to let things be, to relax.  It's not so easy, though.  The combination of feeling the paternal responsibility and the compassion for another human being who is suffering, along with the witness of how they are suffering, proves to be too much. Take those emotions and add the physical drainage of lifting and carrying Ella; pushing and adjusting her; helping and guiding her movements, fetching for her and cleaning up behind her and you have a life that leaves little room for much else.  Hence, we spiral into "ruts" that we feel have no end.  It feels like it will never stop...even when it does, we will never be the same.  Ever.

Taking us where...?
The kindness.  The generosity.  The love.
You.
All who read our blog.
All who embrace us.
All who provide us food.
All who impart to us gifts.
All who pray each day.
All who think of us.
All who relieve us at times.
All who donate to research.
All who donate to Ella's needs.
All who write us notes.
All who play with our kids.
All who work by our sides.
All who we've never met.
All who call us just to check in.
All who distract us when we need it the most.
All who wipe our tears on their clothes.

When we decided that we wanted to share our story with as many who would listen, we had no idea how those who did listen would also respond as you have.  You have shown us that compassion, generosity, and genuine caring is what life is truly made for.  We are a fortunate family to be surrounded, far and wide, by the love and care afforded to us.  If not for you, young and old, near and far, we would still be asking ourselves, "Now what do we do?"...much of our strength comes from the collective love and concern that we feel.  

Which leads us back to...?
God.
It always comes back to Him.
Ella came into this world through the grace of God.  He placed in her immeasurable gifts.  We can look at our lives right now and go on and on about how difficult it is and will continue to be...and while that may be true we can also say, without reservation in our hearts, that we are privileged to have been given the opportunity to be the parents to such a wonderful gift to the world.    

One year has passed us by.  We still have Ella with us.  She is thriving, growing, and becoming her own person.  She delights us with her playfulness, intrigues us with her intelligence.  She amazes us with her adaptability, and challenges us with her needs.  She dazzles us with her beauty, and fills out hearts with her sweetness.  She entertains us with her humor, and loves us with her heart.  

Light a Candle (by Lindsay)

Tonight (Saturday, 8.11.12) around the world, people will be lighting candles in honor of all the SMA angels and warriors out there.  

If you are able, please light a candle at 8:00 pm in honor of Ella and all of the other children affected by SMA.  

And if you are up to it, feel free to take a picture and either tag us in it on Facebook or email it to us so we can show Ella all of the support :)

Your Threads...(by Michael)

There's facts.
There's statistics.
There information.
Then, there's more.

SMA Awareness Month has been a wonderful influx of facts, statistics and information.  All seeking to raise awareness, increase knowledge, and hopefully shed light about SMA to a part of the human population that has never heard of the disease.  Ultimately, the pursuit for a treatment and/or cure lies at the root of it all.


I woke early this morning with Ella, as per usual.  She's somewhat of a "slow waker" and likes to sit for a few minutes holding hands, "charging", or just being silent in the morning light.  Today we went through our morning ritual and my day started.

When I logged onto Facebook I read that a young child with SMA had passed away.  The child had contracted an infection and within a week had multiple-organ failure.  The child now rests peacefully as the parents try to somehow come to grips with it all.

SMA.  It weakens a body to the point of a cold or a simple infection becoming a life threatening situation.

SMA.  It tears at the fabric of life since its target is the young, the vulnerable, the innocent.

SMA.  It forces families to hold dearly to hope; steadfast to change; all the while armoring themselves with a cloak of strength to carry on despite the pain each day brings.

One-third of the way through SMA Awareness Month and all of the statistics, all of the facts, all of the information seems secondary right now.  I've spent the better part of my day thinking about the young child who so quickly lost life to SMA.  I've thought of the parents and how they must be feeling having lost their child.  I've thought of what it really means to care for someone who is terminally ill.  I've thought about SMA and its agenda.

One-third of the way through SMA Awareness Month and I realize that what drives us all is a desire to survive.  Our mechanisms of achieving survival come in as many forms as there are people; yet the common thread of self-preservation and preservation of those we care for spins its way through us all.  Many times the thread reaches to those we have never met.  From these extended threads comes the miracle we so desperately long for...the continued miracle of people coming together to once and for all find treatments and/or a cure for the disease that imprisons our children and takes them from us much to early.

As I was putting together the facts, statistics, and information for ELLAwareness For SMA to share with our corner of the world this month...I noticed that four stats/facts always stood out for me:

• 1 in 6,000 live births affected (approximately)
• 1 in 40 are carriers (approximately)
• #1 genetic killer of young children
• #1 neurological disease (of about 600) closest to treatment and/or a cure (according to NIH)

Of course there is more that one can say about SMA...how it occurs, the quality of life it leaves, prognosis, etc. The four  preceding facts however seem to say so much to me...especially the last two:

• #1 genetic killer of young children
• #1 neurological disease (of about 600) closest to treatment and/or a cure

How can we not find a cure for this disease?  

The young child I read about this morning, along with the many other children who have died from SMA, brings an ache to my heart for all who suffer from SMA and their families.  

The young child I read about this morning, along with the many other children who have died from SMA, shows us that a statistic, fact, or a piece of information is only part of what is really going on here.

The young child I read about this morning, along with the many other children who have died from SMA, are (in my humble opinion) the most powerful, albeit heartbreaking, awareness we can have for this disease.

If you read this post before the evening August 11, 2012 please light a candle at dusk (on the evening of 8.11.12) for all those who have passed from SMA; for all those who suffer daily from SMA; for all those who care for those affected by SMA.

If you read this post after August 11, 2012 please ponder deeply what it means to survive and think about how far your thread spins into the lives of others.  Reach into your own soul, your own being, and ask yourself...

How can we stop the #1 genetic killer of young children...?

100,000 Pageviews in One Year (by Lindsay)

This Sunday (8.12.12) will mark one year since Ella's diagnosis of Spinal Muscular Atrophy, type 2.  

"Ella's Corner" was originally created to inform family and friends of Ella's progress, but it has become so much more! In under a year, we have had over 99,000 pageviews!  

Our goal is to hit 100,000 pageviews by midnight on Sunday (100,000 in one year)!!  

Please share Ella's blog with anyone you see fit.  Spreading awareness creates knowledge, which can help lead to a cure!

Thank you so much for reading!!

Our Thought Is...(by Michael)

The fact that SMA does not affect an individual's intelligence or cognition fills us with such gratitude.  Ella is bright.  She's funny. She's there.

She interacts with Ava and Henry, she finds humor in situations, she plays make-believe.  She knows what she likes and what she doesn't like.  She is aware of her environment and all it has to offer.

She is also becoming aware of her condition.

Lately Ella has been asking to do things that she physically cannot do.  She wants to stand.  She wants to walk.  She wants to run.  She wants to jump...

...by herself.

She has been more contemplative lately when she sees others doing these things and it's sometimes hard to know exactly what she's thinking.  



Lindsay and I sat at her Early Intervention meeting this week and among many other goals set for her by the team was a goal for social-emotional therapy. 

Our thought is that Ella might benefit from a therapy that can help her address her anxieties, fears, wants, and physical development. 

Our thought is to equip ourselves with strategies to use to help her overcome any feelings that may bring her spirits down. 

Our thought is that while SMA causes limitations in what she can do physically we need to continue to find ways to show her that there are others ways to accomplish the same goal; that there are alternate avenues she can use.  

Our thought is now that she is understanding language more we need to have good communication skills and common language with her to be able to help her.

Our thought is that there needs to be a strong trust between her and us so that she can tell us exactly what she is feeling as she gets older. 


We're looking forward to the many goals that have been set by the Early Intervention Team.  They have done wonderful work with Ella and us this past year.

We're looking forward to increasing her independence, introducing more food by mouth, getting her standing for longer periods of time, among other goals.


And now, we will begin the journey into her pysche to help her as much as we can as she continues to live with Spinal Muscular Atrophy Type 2.

Pulmonary Appointment (by Lindsay)

This past Friday was Ella's pulmonary check-up with Dr. Prestridge at Children's (she goes every three months).  


Overall, everything looks great.  Ella is breathing well and doesn't appear to be working too hard for breaths.


Dr. Prestridge did notice that Ella's chest shape is becoming slightly abnormal.  Her chest has a normal square shape on the sides, however, there is a slight protrusion developing toward the center.  This is due to her muscle weakness.


We talked about how Ella wakes up frequently throughout the night.  Dr. Prestridge thinks this could be because her bipap settings need to be adjusted again.  So we are going to be scheduling another sleep study for these settings to be evaluated and possibly have her pressures increased.  


Finally, Dr. Prestridge suggested a new therapist for us to visit who specializes in chest therapy.  There is a 4-6 month wait to see this woman, but she said it will be well worth it.  So we will be contacting this person on Monday.  


Overall, we were happy with the appointment.  We're hopeful that maybe changing Ella's bipap settings will allow us all to get a little more sleep at night!

Words...(by Michael)

Sitting around a table with former co-workers from Hephzibah Children's Association in Oak Park, IL after completing their "Walk for Ella" event we were handed an envelope.  Inside was a card that expressed the love and care afforded to us by our Hephzibah Family along with the magnet that is pictured above.


Words that sink deep into one's soul if you only let them.


Words that remind us what truly matters in our lifetime.


Words that invite us to fill our hearts with more "ones".


Words that allow reciprocal love to exist.  For it speaks of those we love and those who love us.  


Words that speak of the people currently in our lives, those who have passed, and those who are to come.


Many people have told me that Ella has touched so many lives.  She has provided inspiration to others.  She has given strangers cause to stop and smile at the sight of such a young child faced with the challenges of SMA and holding her grace and dignity all the while.


Each time we take Ella out in public and she is in her power wheelchair, the faces of those who see her ceases to amaze me.  Some look away but most look adoringly at her, bringing a smile alongside their gaze as they pass by.  Kids are the best to see for they still lack the social etiquette that tells us not to stare.  They continue to hold their parents' hand while they turn and twist their body to continue exploring every aspect of Ella and her chair; often times they start being "dragged" by their parents who are actually unaware of the childlike stare taking place.  Inevitably the child will ask the parent if they "saw that" and/or make a comment like, "that's so cool".  The response of many parents is refreshing as they say things like, "Yes, she really does well in that chair" or "She is such a brave girl".


I wonder if some of those kids or adults speak of Ella later in their day.  I wonder if questions are asked of the adults what the answers might be.  I wonder if seeing Ella for the brief moments in their lives will make some sort of a difference.  


I wonder...