"Me" Time (by Lindsay)

Ever since shortly after Ella's diagnosis, people have been telling us how incredibly important it is to make time for "us"...time for Michael and I to be together (without the kids) as well as time for us to do things alone.

Well, it's easier said than done, especially with Ella's growing demands and needs.

But lately, we've making more of a conscious effort to get out for little breaks.

We try to get out for a date night at least once a month.  We both have bible study groups that we attend at church on a weekly basis.  We try to make time to go to the gym at least one a week.

And I'm taking a gymnastics class.  Yes, gymnastics at 31 years old.

For those of you who knew me growing up, you know that gymnastics was a passion of mine for quite a few years.  But it's been 15 years since I've performed any of those skills and figured it was probably not something I'd ever do again.

Until recently.

A little over a month ago we signed Ava up for a gymnastics class (thank you, "Casten for Cookies"!) and we found out that they have an adult tumbling and trampoline class for those who are 18 and older.  I was immediately curious about this class and asked the woman working at the gymnastics club about it.  She said it's a ton of fun and it's for adults of all ages and experience levels.

So I signed up.  And I can't even begin to describe how much I love it.  I don't know if it's because my body is remembering how to do the skills I once did, or if because it completely takes my focus away from SMA, ED, and all other stressors in life, or if because it reminds me of simpler times.  But it's incredible.  So incredible that I just signed up for another time, so I'll be doing it twice each week instead of once.

Here is a video taken this afternoon of me doing a round-off followed by three back-handsprings...I'm honestly blown away at what my body is allowing me to do after only a little over a month of taking this class.

Anyway, Michael and I are truly finding value in "me" and "us" time and we're going to be looking to incorporate more of it into our lives.  We're going to start adding more dates to our "Care Calendar" if anyone is interested to help out with the kids if there are times when both Michael and I would like to get away for a little break :)  

We have the Care Calendar set up so that if only Ava and Henry need to be cared for, it is open to anyone we know.  However, if Ella is involved in the care, whomever watches her/them must be a "Personal Helper" (those who have been trained in and have experience with Ella's care). 

Here is a link to Ella's Care Calendar: www.carecalendar.org  

The calendar ID is 115107
The security code is 6639

*Personal Helpers, we will email you a reminder of your unique security code.

Thank you so much for your help!  You have no idea how much we appreciate having a little time away :)

"I'm Walking!" (by Lindsay)

Yesterday I took Ella to the orthotics clinic where she has all of her braces made.  It was a simple follow-up appointment to see how her TLSO (back brace) and KAFOs (full-leg braces) have been working out for her.

Scott, her technician, said that her braces seem to be working well for her and he gave me a couple suggestions on how to continue to get the most out of these braces for her.

Scott was watching Ella stand at a chair with the braces on (with my support) and he had a curious look on his face.  He asked me if she could move her legs in a "walking" motion if I hold her up.  I said she could, but she needs a lot of support.  He then said he wanted to get something and that he'd be right back.

When Scott returned, he had this strange contraption-brace-type-thing in his arms, which he called an RGO (reciprocating gait orthosis).  Basically, a person's legs are strapped in and it goes up their back for support.  Once they're in, the idea is that they lean on one side, which causes the opposite leg to move forward.  Then they lean to the other side, causing the other leg to move forward.  That is, walking.

We tried it on Ella (it was quite the challenge to get her in it!) and stood her up.  With all of this support she was able to stand on her own in the middle of the room!

We then took Ella out into the hall and I crouched behind her to help her lean from side to side, making her feet "walk" (she isn't strong enough to lean by herself at this point).

Scott is letting us keep the RGO for a while to see how we like it.  We definitely know Ella likes to walk!

They Share One Another...(by Michael)

September 24, 2012 would have marked my late sister's 52nd birthday.

Julia Anastasia Casten was born on September 24, 1960 and passed away at the tender age of 48 on June 27, 2009.  Her death followed our mother's death of just one year earlier (June 25, 2008).

Julia was much like Ella.

Julia fought against Hodgkin's Disease, Breast Cancer, and compromised breathing for more than half of her life.  Ella fights Spinal Muscular Atrophy Type 2.

Julia brought a unique perspective to the world.  Ella brings her perspective too, eliciting smiles from all whom she meets.

Julia fought hard and was determined in every aspect of her life.  Ella fights everyday to overcome the limitations placed upon her and her determination is admirable.

Julia was a beautiful girl, inside and out.  As is Ella.

Julia had two siblings, parents, and friends that loved her dearly.  Ella has all of that in abundance.

Julia loved to talk and be social.  Ella has a vocabulary and social skills unlike any other two-year old.

Julia and Ella never met.  Had they met I'm sure they would have shared a bond that would run deep into their souls.  I do believe, however, that they know one another.  They are part of each other.  Through the mysteries of life and death, the present and the after-life, I firmly believe that their spirits have crossed...and somehow they share one another.

As Ella grows, as she becomes older and more aware of who she is and what her life will be like, the similarities that she shares with Julia will prove to be to her advantage.

Julia was an inspiration to many, a friend to all, a woman who knew what she believed, and a soul that persevered through extremely trying times.  Ella is most certainly Aunt Jules's niece...

Rest in peace, Julia.

Love,
Michael

Swift & Severe...(by Michael)

The seasons are changing.  The beauty of Fall will be upon us shortly.  With it comes chillier temperatures, cloudy days, and the promise of a winter ahead.  The promise doesn't end there.  Colder weather also holds in its clutches the promise of sickness.  For us, it's a matter of life and death when it comes to being sick...Ella's life.

SMA renders its victims so very vulnerable.  It robs them of the ability to effectively fight illness.  Simple colds.  Routines runny noses.  Run-of-the-mill coughs.  All, and more, present such a threat to children afflicted with SMA.

As the season changes we are hearing that more and more kids with SMA are becoming ill.  It's par for the course.  It challenges the parents, the medical profession, and the children themselves when an illness progresses to the point of hospitalization; which is often the case.

One thing that remains constant throughout the "sickness season" is the support that is offered through so many avenues.  SMA Families rally around each other offering advice, experiences, and practical knowledge.  Friends of people who have a child with SMA are cognizant of their own illnesses and exercise caution when planning on being around a child they know has SMA.  Family members pitch in and help take care of the daily grind that is life.

While the first frost has yet to come the season ahead is looking us squarely in the face.  Being part of the SMA Community at large affords us access to other families who struggle with this disease.  One in particular is now dealing with pneumonia...we pray for health and healing as their two year old fights for her life.  Our thoughts are with the parents as they have taken their child to the hospital to get the absolute best care they can for her.  We follow their updates closely, knowing the feelings they are encountering.  

SMA leaves its victims vulnerable.  The change from health to sickness is often swift and can be deathly severe.  It's a reality that every parent whose child has SMA must live with.  It's scary.  It's intimidating.  It's awful.  Yet, it's what we have to endure; for the love of our children, for the hope of a treatment or cure, for the chance to spend one more day with our beautiful children.

The Eyes Upon Me...(by Michael)

About four years ago I sat in a classroom with Jessica, who is pictured with Ava, Ella and Henry, earning credits beyond our Education degrees respectively.  She is a teacher in my district.  We didn't know each other but we had the commonality of teaching in District 205.  We become acquaintances.

At that time, Lindsay and I had our first baby, Ava.  She must have been all but 6 months old.  The spark of life, that was to be Henry and Ella, lie waiting in the apple of our eyes.  SMA was nowhere to be found in our world.  We had never heard of it and wouldn't hear of it for a few years to come.

When the class was over, Jessica and I went our separate ways; back to the lives we had built with our spouses.  Occasionally we would see each other at District functions; for the most part, though, our lives remained separate.

As the story goes, Lindsay and I brought Henry into the world and 20 months later, Ella joined us.  Fourteen months after her birth our worlds changed forever as we were given the diagnosis of SMA for Ella.

Almost two full years passed when I received an e-mail from Jessica.  She reminded me of our acquaintance and offered to raise money for Ella through an annual "Bar Bike Rally" that had been in existence for the past 21 years...this upcoming one being the 22nd Annual.

The concept is brilliantly simple.  Gather a group of people who love to support others while riding their bikes from one establishment to another...enjoying the fruits of each establishment along with the comradery of peers.  Throw in some raffle prizes, adorn the participants with matching shirts, and you have yourself a wonderful fundraiser.

We humbly and graciously accepted Jessica's offer and she set the event in motion. 

On September 15th we brought our whole family to the first establishment of the bike ride (Stulgin's Park Boulevard Tavern in Villa Park) to meet the many people who came out to show their support.  We later found out that traditionally the participants are not aware of whom they are helping.  They are usually told this information after the day is over at the last establishment.  Watching the expressions on the participants' faces as they interacted with Ella brought joy to our hearts.  Ella loved seeing the people; she even requested to sing "Old McDonald" with a former co-worker of mine from Hephzibah Children's Association where I worked some 14 years ago (thanks Rick, for singing with her).

I spoke to the group of 200+ people before they embarked on their afternoon journey that would take them through Villa Park and into Elmhurst.  After thanking them for their time and generosity--not only for us but for the many before and after us, I found an opportunity to speak to them about SMA.  As the words were flowing from my lips to their ears about the statistics, the etiology, and the prognosis of this disease, it felt surreal to mention Ella's name in that context publicly.  The place fell silent and as I looked out into the crowd I saw each person standing seemingly perfectly still.  It was as if their bodies were on "pause".  What most captured my attention was their eyes.  Every pair of eyes were on me yet they were not looking so much at me, they were looking from their own souls into the soul of Ella and all those were have been, are, and will be affected by SMA.  I noticed sets of eyes filling with the tears of compassion as I spoke of her disease.  I witnessed sets of eyes that clearly were hearing about SMA for the first time and they exuded an almost disbelief that this is the first time they've heard of a disease that is considered the #1 genetic killer of children under age two; and that 1 in 6,000 live births are afflicted with SMA; and that 1 in 40 of us are carriers of the recessive gene responsible for SMA.  I saw eyes that, upon my last few words, shifted their gaze downward, possibly thinking of an experience that had been brought back to them through this experience at hand.  We all have struggles.  We all have loss.  

We all have something else...

...each other.

Through no efforts of her own, Ella has brought so many people together and shown us, time and again, that there are beautiful people out there who will help.  Whatever may shine through the eyes of those we come in contact with, it was apparent to me, on this day, that behind those eyes there resides one spirit...a spirit of hope.

Our family deeply thanks those who participated in the Bar Bike Rally.

Thank you Jessica.

Sincerely,

Ella's Family

***************************
The video we made for the Bar Bike Ride

"Her Hope"

Music by Glass Pear ("One Day Soon")

An Answer Must Be Given...(by Michael)

She was taken in to have her diaper changed.

Lindsay picked her up from her wheelchair while Ava and Henry looked on from the small picnic table where they were eating their dinner.

An ordinary scene around the Casten household.  Nothing new.  Nothing fancy.  Just Ella being taken in to have her diaper changed. 

Henry looked at me.  I returned the glance and was about to tell him to finish his dinner when he spoke, "Why does SMA make you not walk?"

My head tilted a bit at his question and I said, "What?" as my eyes squinted a bit.

He repeated himself with a bit more conviction, "Why does SMA make you not walk?"

Ava turned from focusing on her plate to focusing on me.

Henry stared at me, waiting for my answer.  I had to answer him.  He wanted to know.  He's almost four years old and he wanted to know why SMA makes a person not be able to walk.

I know the answer to this question.  I could probably go on and on about the mechanism SMA employs to rob its victims of the ability to walk among other "taken-for-granted" abilities many enjoy.

I knew I couldn't go into neurons, and signals, and atrophy.  It wouldn't have worked for Henry.  Sure, he might've said, "Oh" and left it at that but it wouldn't have truly satisfied his curiosity.

I looked at him and spoke,  "It makes it so your muscles don't work."

"Your muscles?" he inquired.

"Yes."  I responded.  "Your muscles make you move.  And SMA makes your muscles not work."

Ava chimed in and said, "The brain doesn't work."

Henry looked at Ava the same way I looked at Henry when he first asked the question.  He turned and asked of me, "Where's your brain?"

I told him that your brain is in your head as I pointed to my head.  I then continued, "Ella's brain works just fine.  Her muscles don't work."

Ava took the liberty of demonstrating for Henry.  She tilted her head waaay back and began talking, "Sometime when Ella puts her head back like this, she can't get it back up.  Watch what I do, Henry.  I can move my head back up.  Ella can't."

Henry mimicked Ava and seemed to understand the limitations placed upon his sister by SMA.

The questions are coming.

The answers are complicated.

The feelings are stirred.

The emotions are tested.

The life of a parent with a child with a progressive, degenerative, terminal disease pounds itself on each member of the family; it effects each person in such a personal, indescribable way.  

Lindsay and I have a heavy-laden responsibility to ourselves, to each other, to Ella, and to Ava and Henry.  A responsibility that we never imagined would present itself to us.  A responsibility that will determine much of how each of them lives their life in the midst of what life brings to them.  They will understand more about compassion and understanding; patience and even-temperament; the human body and its frailties than many of their peers.

The questions are being asked.

The answers must be given.

I can only pray that as I continue, as we continue, to answer the questions presented by our children surrounding a topic that no child should have to be discussing in the first place, that our guidance, our explanations, our answers to the innocent children will suffice to satisfy their curiosity, bringing an understanding of how this world works.

Her Hope...(by Michael)

Capturing some of Ella's most recent life moments, we have put together a short video.

A Delicate Road...(by Michael)

Her language skills have developed quite nicely.

Her ability to navigate social interactions continues to grow.

Her desire to participate increases daily.

Her awareness of herself and others is rising to the surface.

Up until now we have really had to confront, in terms of Ella, the physical aspect of Spinal Muscular Atrophy; the loss of muscle function, the disproportionate growth, the ever-present awareness of how to lift her, hold her, and keep her moving through space to gain that all important sense of kinesthetics.  We manipulated our house, our cars, our whole environment.  We've educated ourselves, Ava & Henry, our family, friends, and caregivers on the specifics of caring for Ella.  We've taken on new sleep patterns that resemble those of parents with a newborn child.  We've adjusted how we schedule our day's events to accomodate her feeding schedule.  The list of physical changes and challenges goes on and as time rolls into the future, the list will grow.

The psychological aspect of SMA has been challenging as well.  As adults, Lindsay and I can work through the psychological battles that SMA engages us in; we can and have taken steps to "put our oxygen masks on first" so that we can help our children.  We have sought out ways to work closely with Ava and Henry to ensure, to the best of our abilities, that they are well cared for in an environment that places many demands on them...probably too many for such young children. 

The time has come to really begin to look at ways to work even more closely with Ella and her psychological make-up.  She's a smart child, well adapted in her abilities to observe, communicate, and express herself.  She is becoming aware of her limitations in comparison to her siblings.  She is becoming more contemplative in her reactions to not being able to participate in certain activities.

We have a delicate road ahead of us.  One that doesn't rely on equipment or accommodations, but rather on an arsenal of psychological understandings, empathies, and determinations designed to guide her through difficult times as she grows. 

Times of loneliness and isolation.

Times of bitterness and anger.

Times of desperation and despair.

She's still a child at heart; a child in mind, a child in body...yet her body won't allow her heart and mind to fulfill their childlike desires of running, jumping, swinging, or climbing...not to mention actions we all take for granted such as combing ones' hair, dressing oneself, or even bathing oneself.

Our responsibility takes on a new dimension as she grows older; along with the typical child-rearing practices all parents are subject to we find ourselves also faced with a challenge that neither of us have any experience in dealing with.  

We are fortunate.

We are fortunate that God has gifted us with Ava, Henry and Ella.  We are fortunate that He has placed family and friends along our path.  We are fortunate that our Creator saw it fit to place, in Ella, the ability to psychologically grow in a way that lends itself well to us being able to parent her, nurture her, and provide for her, both physically and psychologically, for the duration of her life.  

The road is delicate...soft to the touch and fragile in its design.  We rely on God's love for Ella, our love for her, and the love of so many...