That'SMA Dad...(by Michael)

Today is August 26, 2013.   Two years and two weeks ago (August 12, 2011) my daughter, Ella Sabine Casten, was diagnosed with Spinal Muscular Atrophy (SMA) Type 2.  A life changing event for our entire family. 

While SMA ravishes the physical body, it leaves the mind untouched.  And oh what a mind it is!  Kids and adults with SMA are very bright; very intelligent.  The ability to adapt to a disease that methodically deteriorates their muscles, leaving them weaker as time goes by, is highly admirable...to say the least.

As SMA challenges the individual to perform daily tasks, their tolerance for frustration remains high...they persevere and fight, struggling through what amounts to extremely demanding activities; and they always perform these activities with a determination unmatched.  

Within the world of Spinal Muscular Atrophy, those afflicted would have just cause for viewing life in general as a cruel joke...; they do not.  The captivating personalities of people with SMA is nothing short of miraculous.  They naturally draw people in, bringing lightheartedness and a sense of peace to the relationships they form.  They elicit the help they need not so much by the asking, but rather by the love that so freely flows from their souls.

Being a father of a child with SMA has shown me a part of life that I otherwise would have never known.  Compassion for my child closely coupled with inevitable thought of her demise pulls my emotions in directions formerly unchartered.  Desperation for a cure, even a treatment, coincides and clashes with the reality of SMA we face day in and night out; repeatedly.

Caring for my children has become an endeavor of not only love but also one of captivation by their very presence.  I realize that the moment we have together is the only moment of its kind...it's precious and fleeting...as is life.

I created a video to honor the fathers who care so deeply for their own children who are afflicted by SMA.  Some dads in the video have lost their child(ren) to SMA.  Some dads are in the thick of the journey.  Yet, still others have raised their children and helped them attain adulthood despite the odds against them. As I put together the tribute I saw the images that were sent to me several times over.  I noticed that despite the fathers' experience with SMA, one aspect rang through as a common thread...

I invite you to find that thread...





First Day of School! (by Lindsay)

This morning I watched our baby girl leave our house on a school bus that would take her to her first day of preschool.

It was a moment of mixed emotions for me.

I didn't know what to expect from Ella.  Would she cry?  Would she be scared?

I knew that Ella has been so excited to start school, but I also knew that she was a little nervous about taking the bus by herself.

But in usual "Ella" style, she was a champ :)

She was all smiles this morning getting on the bus.  But once she was on the bus, she was very serious.  I know she was a little nervous, but I think she was also proud.  Proud to be a "big girl".

As the bus drove away, I had an empty feeling in the pit of my stomach.  I've never not had Ella at home when I was there.  It was hard to watch her leave.  She's still my baby, after all.

When I got back in the house it was quiet.  Very quiet.  Henry was still home (he starts preschool after Labor Day), but he's pretty self-sufficient.  

I didn't hear the usual (and frequent) words coming from our youngest child: 

"Mommy, I need help!"

"Mommy, I want a different toy!"

"Mommy, I want to go down the basement!"

"Mommy, I want a drink/snack!"

"Mommy, I need to go potty!"

"Moooooommmmmmyyyyy, I need you!!!"

It was strange not hearing that little voice almost constantly.

So I sat in the silence for a few minutes, thinking about Ella, wondering if she had arrived at school yet.

After a bit I went and played some Wii with Henry and then we had a snack.  

Then I dusted, vacuumed and washed the floors.

As it was getting closer to the time that Ella was to return home, Henry and I went out in the front yard to play a little soccer while we waited for the bus.

At last Ella arrived, and I saw a huge smile on her face through the bus window :)

She said she had a GREAT time at preschool, and then proceeded to tell me all about her morning.  I was so proud of our little Squishy :)

Here's Ella getting off the bus...

And here is Ella talking about her morning at preschool (with a little attitude, which I LOVE :))... 

Preschool (by Lindsay)

Ann Reid Early Childhood Center

Ella is starting preschool next week.  

She's so excited!  She can't wait to be a big girl and go to school like Ava and Henry.

I'm also looking forward to it :)  For the first time in six years, I will have a few hours to myself every morning during the week!  I'll get to run errands alone, do laundry alone, clean alone, and maybe even do something for myself once in a while!

But I'm also finding myself feeling nervous.  Not the kind of nervous I felt sending Ava and Henry to school for the first time.  That's normal nervous.

This is the kind of nervous where my heart aches for Ella.  What is she going to say when other kids ask her questions?  The questions that I've always been there to answer?

"She's in a wheelchair because she has a disease called SMA and she can't walk."

"Those leg braces keep her feet in the right position."

"That tube gives her nutrition because she has a hard time eating by mouth."

It's easy for me to answer those questions.  I've done it a hundred times.  But what will Ella say?  Because of course she'll be asked.  The other kids in her class won't be rude about it, they'll just be curious.  And rightfully so.

I know her teachers will be there to help.  And there will be some other kids in her class with special needs, so hopefully all the attention won't be on Ella.

But I still feel uneasy about it.

I know how much Ella is looking forward to going to school, and I don't want her to feel upset when she really starts to realize that she's a little different than most kids.  That she's not in a wheelchair because she's too young  to walk.  She's in a wheelchair because she has SMA, and most kids don't have SMA.  

I know after a few days or weeks everything will be fine and the other kids won't think anything of her wheelchair.  They'll just see Ella for who she is.

A bright, sweet, funny, caring and incredible little person to be around.

I just hope and pray that it's a smooth transition for our baby girl :)

Walking the Walk (by Lindsay)

Yesterday Ella's gait trainer arrived and she is so excited to have it!

The gait trainer is a piece of equipment that allows Ella to practice walking without our assistance.

As soon as we put her in it, she started walking right away and had no problems moving the gait trainer on her own.  Our vendor said that within a few months she'll be a pro!

Ella will use the gait trainer daily at home and at preschool, which will help both her bone density and muscles :)

Of course Ella picked the color to be purple and it even has a removable tray for her iPad!

We're all very excited to have this new piece of equipment for Ella!

The Need to Fix...(by Michael)

It's a man's natural tendency; and  fatherhood brings it out on a daily basis, often time several times a day (or night).  Maybe it's something in our genetic make-up.  Maybe it's something that society has instilled in us.  Perhaps it fulfills an emotional need which, in turn, brings us closer to those we love; those we care about; those in our life.

It's the need to fix.  If your child loses something there's a certain satisfaction in finding it for them when it seemed hopeless.  When something breaks around the house, out comes the toolbox, the tape (often times it's duct tape), or the hammer (hammers fix everything!).  When finances prove to be a challenge, manipulating numbers and figuring it out is the order of the day.  When someone you love gets sick, the need to care for them, comfort them, and be with them until they are better resonates.

A father's place in the family can be precarious at times.  Balancing the societal expectation of being a "man's man" alongside being the "new-age, modern, sensitive" guy.  Each has its place and rewards. Within both realms the "need to fix" remains intact.

When a situation presents itself that cannot be fixed such as the toy being lost and gone forever, the broken household item that is beyond the scope of repair, or the ends not quite meeting for a particular month, we as men, who "need to fix", resort to "Plan B" or "Plan C". 

With "Plan B" we figure out a way to get outside help. By doing this we feel in control of who we seek out.  When we utilize "Plan C" we come up with an explanation that allows us to keep our pride intact.  Either one can be used, sometimes simultaneously.  In the end we have maintained our dignity and still feel that we "fixed" it.

Having a child with a terminal illness that has no treatments or a cure presents the ultimate "need to fix" feelings.

At first, one takes in the situation and finds a way to "come to terms" with the diagnosis.  We learn everything we can about the disease.  We take a deep breath and redefine who we are as a father, a husband.

Time passes.  The disease does not.  It's relentless in how it presents itself in our children.  Watching your child slowly deteriorate chips away at your sense of permanence, your sense of life itself.  The "need to fix" grows stronger. It's akin to fighting an uphill battle, getting one step forward while being knocked two back.  

Our sense of "fixing" gets distorted.  It becomes a challenge to maintain the equilibrium between the "need" and the "outcome"; for the outcome seems so distant.  We procure equipment...the disease remains.  We modify living spaces...the disease remains.  We adapt toys, games, lifestyle...the disease still remains.  While these "fixes" solve a problem for our child and our family, they do not fix the SMA...which hauntingly becomes the ultimate "fix".

Time passes.  We trudge on, "fixing" what we can and accepting that which cannot be made whole.  We are tested by the internal barometer which measures our participatory role in the family.  Fatherhood takes on a whole new meaning when your child faces a disease such as SMA.  

We face it with our child.  We take a hold of their hand, gaze into their eyes, and see the beautiful person they are.  We keep them safe as we hold them with a gentle tightness.  We come to understand that "fixing" this may not necessarily be physical in nature, although that is part of it. We learn over time that our presence in the life of our child is what we are called to experience.

The frustration that accompanies this disease for those afflicted with it are enormous.  The ability to overcome these frustrations and love their own life is nothing short of admirable.  Imagine learning new physical skills and losing them over time. Imagine having to rely on machines to keep you alive.  Imagine having a terminal illness.

When one stops and thinks about it, one realizes that the "need to fix" is more about the "need to attend".  Attend to the needs of your child.  Attend to the needs of your spouse.  Attend to the needs of your other children (if you have them).  Attend to the needs of yourself.

There will be plenty of opportunity in a lifetime to "fix" things.  Some things in life are quite "fixable".  Some things are not.  Some things in life call us to attend rather than fix.  

For me, I am embarking on a new chapter of how I define myself in terms of SMA.  

I must attend.

Pass It On...

Please share with someone who might not know about 

Spinal Muscular Atrophy...

Closest to a Cure...(by Michael)

August is SMA Awareness Month

What does it mean to be "made aware"?  How does one tell another of a life-threatening condition?  Where does one begin?

Spinal Muscular Atrophy is nothing short of a devastating disease that has been named the #1 genetic killer of children less than two years of age.  Remarkably it has also been named the one neurological disease of over 600 that is closest to a cure (NIH, NINDS).

Closest to a cure.  Those words ring chimes of hope in the hearts and minds of each and every family that has lived, is living, and will live a life with SMA.

Researchers work tirelessly, putting to use their extraordinary intellects, unequivocal talents, and sheer compassion for those they are trying to help as they reach deep into their chosen fields making SMA the #1 neurological disease closest to a cure.

Doctors and therapists, from a variety of disciplines, show genuine compassion while working with people who have SMA.  They teach and learn, they offer a kind of help available nowhere else.  Forming meaningful relationships with families while fulfilling their role as physician, therapist, or medical assistant.

Organizations exist that otherwise people might not know about.  From financial assistance to family support, these organizations generously provide without hesitation.  The people behind the organizations love what they are doing and it shows each and every time they interact with families.

Families directly affected by SMA network via Facebook, Twitter, YouTube, e-mail, and a plethora of other social networking avenues.  They help one another, encourage each other, celebrate the triumphs, and cry at the defeats.  When a person passes away due to SMA, child or adult, the community mourns with an emotion that personalizes the death.  Whether we knew the person or not...sadness unlike any other enters.  Being touched by such a devastating disease runs deep into the psyche, deep into the emotional tank we all have.  We look to those words again in our hearts and mind...closest to a cure.

Family and friends learn of the disease through those that live with it.  They react in a variety of ways; in the way they know best.  Unbeknownst to them they provide more than just support.  They provide a place for us to continue to live a happy, healthy life despite a terminal illness staring us right in the face.  The value of a friendship or family member is the blessing that provides us with a place to rest our hearts and heads. 

Those directly affected by SMA, the kids and adults who have this disease, are truly what brings about the awareness.  The strength, resilience, bravery and fortitude echoed through the years by every person afflicted with SMA is a miracle in and of itself.  The debilitating disease is relentless.  It can work through the body quickly or slowly, or a combination of both over a period of years.  It present challenges that many people wouldn't even think about...challenges in being able to do the simplest of tasks or any task at all.  And while the body slowly atrophies, the mind is sharp as can be.  A person afflicted with this disease, each and every one of them, is brilliant.  Their minds are a beautiful miracle; their souls are more so.

Yes, 1 in 40 of us are carriers of the recessive gene responsible for SMA.

Yes, 1 in 6,000 live births are affected.

Yes, SMA is the #1 genetic killer of children under two years old.

Yes, the National Institute of Health (NIH) named SMA the #1 neurological disease closest to a cure.

Yes, SMA is considered a terminal disease.

Yes, the facts are there. 

As August comes to us, we step back to look at the life we have.  We are thankful for the moments that grace us.  We are in awe of those who fight for us, with us.  We step back and know that the awareness we may spread could, in some way, help those stricken with Spinal Muscular Atrophy.

On August 10, 2013 please join in the candle lighting event.  Light a candle for those who have lost their lives to SMA and for those who are still fighting for their own life.

Please share.