A Run From Pennsylvania...(by Michael)

     Walking the path of SMA with Ella has shown us much.  One aspect that we speak of often is the unending support we receive from so many.  When speaking or writing of "the many" we will often say, "family, friends, acquaintances, and strangers".  I'd like to speak of one particular "stranger"; whom, by the way, is no longer a stranger.

     Her name is Katherine and she lives in Pennsylvania.  We had never met Katherine.  We never knew her at all.  She, likewise, never knew us.

     Katherine is a runner.  She runs all kinds of races.  She trains, from what I can tell, constantly.  She braves all sorts of weather and terrain.  To run as she does requires commitment, determination, stamina, and a passion for it. 

     We met Katherine through Facebook.  You see, there is a group of people, a rather large group, of people who are runners.  The unique part of their running is that they "run for others"...they run for those who cannot.  We heard of this group through a friend and decided to check it out.  We "signed up" Ella to have a runner.

     Katherine is Ella's runner.

     Katherine runs for Ella.  She posts pictures, stats, notes, encouragement, and anecdotes for us to read to Ella.  She will often send Ella her medals, running numbers, and other articles from the race day!  

     Ella loves Katherine.  Whenever I tell her, "Ella, your runner, Katherine, has left a note on the phone." her eyes light up and her little body shakes in excitement.  I read the entry and show the pictures.  I ask Ella what she wants me to write to Katherine.  Invariably she responds, "I love you, Katherine!"...and so I write it, along with some of Ella's tidbits.

     Katherine is no longer a stranger.  She is now part of ELLAwareness for SMA.  In fact, she now posts SMA facts and shares Ella's story through many of her entries, thus spreading the word to whomever reads her posts.

     Katherine may be many miles from us; she may have once been a "stranger" to our world; yet now, in such a short time, she has run her way into our lives...and we are thrilled to have her "running for Ella"...

     Thank you Katherine... 

A Glimpse of What I See...(by Michael)

Showering our children with love.  Filling our house with grace.  Bringing smiles to our lives.

Ava, Henry, and Ella have a mother who has dedicated herself wholly to them.  I have a wife who loves me.  The world has a person who brings it "cookies and flowers" in that she spreads joy wherever she finds herself.

Lindsay Casten.  Born on December 24th, celebrates her birthday amidst the holiday season.  A season which she holds dear to her heart.  A season that is highly favored in her eyes.  She finds a joy during the Christmas season that I have yet to find in another.  

The joy that surrounds her is more than the Christmas carols, candles, and cards.  It's more than the fire, the hearth, and the decorations.  It is a simple yet complex feeling that shines forth from her.  If you catch her in just the right light, at just the right time, you can see the beauty of the season in her face.  Her eyes sparkle just enough to catch yours--and her smile captivates.  

When we were dating, engaged, and first married we often talked about raising a family.  The warmth and security felt during those discussions brought us to bring our first child, Ava, into the world.  We lovingly brought Henry and Ella soon after.  We were a family of five.  

The diagnosis of SMA (Type 2) brought with it more than we could have ever imagined.  It added a dimension to child-rearing that eludes most families.  I can tell you what it means to be the father of a child with SMA...to be a mother, though...I can only relay some of what I see in Lindsay.

Although Lindsay watches what SMA does to Ella every moment of her life, she perseveres in taking care of her.  She treats her just as she does Ava and Henry.  Her sense of fair play and parental judgement is not clouded by the disease.  She finds ways for Ella to participate in every part of our family life.  She finds toys and games, furniture and equipment, that will be suitable for Ella.  She has organized Ella's daily life in such a way that Ella thrives within it.  She disciplines her with a firm yet loving hand, as she does with Ava and Henry.  She dresses her in clothes that bring out the natural beauty of Ella despite the bulky braces she must wear.  Within a day of caring for all three children she manages to keep the house beautifully clean and the dinners deliciously cooked.  She shops for food, clothes and whatever else we need, all the while as she works through the challenges of SMA.  At the end of the day she reads to our kids before bedtime, is able to give me some time, and then curl up with her book to be taken away in the story of her choice.  

And this is just a glimpse from me to you.

Today is Lindsay's birthday.  I can only hope that as she traverses through the day and through the holiday season she can see that how incredible she really is to us; how wonderful she is to have around, and how grateful we all are for her.

With Love,

Michael, Ava, Henry & Ella (Sasa & Doublestuff, too!) 

That's Right, Who Wouldn't? (by Michael)

My intention was to go to Wendy's with Ava, Henry, & Ella.

I pulled onto the entrance street of the restaurant only to see a boarded up building.  A sign flapped in the wind and read, "Closed for Renovations".  The three kids and I were disappointed; but more so we were hungry.

Without thinking I said, "We can find another Wendy's or McDonald's or something."  Once the word "McDonald's"  left my breath all three kids screamed, "YAY" and Henry said, "I just saw one over there and it has a playground!!"

The McDonald's playground.  Every kid loves the McDonald's playground.  Who wouldn't?  You get to take off your shoes and climb, jump, slide, and be silly knowing that a McDonald's meal was either just enjoyed or is coming soon.

Who wouldn't?  

This is SMA.  A child who has every mental capability fully intact.  A child who has every desire as any other child.  A child with the urge to play, to move, to command her world...but cannot.  Not for lack of will.  Not for lack of desire.  Not for lack of creativity.  But for lack of motor neurons.

Despite not having the climbing, sliding, and jumping available to her, Ella wanted to sit on the McDonald's playground.  She wanted to be a part of it in some way.  Many children stopped and stared at us.  They glanced at her wheelchair then back at her and back again.  They were undoubtedly trying to figure it out...for to them I'm sure she certainly looked like she could easily get up and walk. Each time they stopped I said, "Hello" and Ella followed suit. 

She wanted me to stay with her, "In case someone knocks into me and I fall." she told me.  So I did.  Other parents watched us interact and when our adult eyes met there came a smile of encouragement from those I saw; for they knew that whatever my child was suffering from, it was something serious.  

I sat and played with her while Ava and Henry played all over the playground.  She enjoyed herself as we sat there.  She danced her little "sitting wiggle" dance, she giggled and laughed, she leaned on me and hugged me, she scooted so her legs dangled over the side, and of course, she wanted her shoes off--just like everyone else.  

I didn't want to go to a McDonald's that had a playground.  Or if it did have a playground I didn't want to allow my kids to play there...I thought it would be too hard for Ella; or maybe I thought it would be too hard for me.  I knew this was unfair, to all of us, so I set aside my feelings and allowed my kids to be kids...to be who they are; SMA or no SMA.

I guess it's about meeting SMA where it's at and then taking hold of it, owning it, and working with what you have.  How funny that a three-and-half year old just simply knows this.

Our First ellaWEAR Public Event (12/7/13)!!

We're so excited 

to be a part of this holiday event. 

We will have a booth set up with all of our ellaWEAR Jewelry 

alongside 20+ other local small businesses.  

If you're in the Chicagoland Area 

stop by and find some 

creative, original, and unique gifts!  

Of course, all sales of 

ellaWEAR Jewelry 

will benefit Ella Casten's housing needs.