"It's What We Can Do" (to say the least)...by Michael

Time is short. Attention is needed.  Some nights are long, loud, and test the patience of us all.  One night in particular, each week, we are hard-pressed for time, attention, and patience.

For the past school year Thursday nights had been particularly challenging for us.  Ella had two therapy sessions this day each week...one in the early morning and one in the mid to late afternoon.  Lindsay juggled the three kids between school and therapies in the morning only to get home and feed them their lunch.  Often, because of the timing of Ella's afternoon therapy, Lindsay would have her either skip nap or wake up early (never a good idea to get a 3-year old up before she's ready).

By the time I would get home from school I could tell Lindsay was frazzled from the demands of the day.   Sometimes one of us would have a personal appointment we'd have to attend to top it off.  

Dinner.  Bath. Stories. Bedtime.  The end of the day doesn't provide much energy for these tasks, and frankly speaking, handling a child with SMA all day is exhausting, to say the least.

A dear, sweet person by the name of Sue came into our lives through my work.  I taught one of her boys.  She is a kind-hearted woman with a sense about her that speaks to how well she raises her own 5 children.  

Sue put together a meal provider group for the "dreaded Thursdays" for us.  She elicited the help of many people in her community; the community in which I teach.  Each week, without fail, we were provided a nutritious, delicious meal.  Each week we knew that one major item off our "to-do list" was taken care of.  Each week we talked with our kids, while we ate, about the kindness and generosity of people in the world.  They grew accustomed to me bringing home a "special meal from a Lincoln Family".

"It's what we can do" said Sue when I saw her last and thanked her for caring enough about us to put forth the effort to provide for our family, along with so many others. 

'It's what we can do';  simple words spoken by a person who looks beyond herself.  Spoken by a person who seeks the good in what she has to offer; and through her actions teaches not only her own children what it means to be compassionate, but elicits others to do so as well.  

Those who signed up to help graced us with their culinary talents.  They brought to us notes of encouragement along with the love of a meal meant just for us.  Those who provided a meal provided more than just food for our bodies, they gave us food for our souls.  Those, who found it in their hearts to help lift the burden that we carry with us daily, have made an everlasting impression on our family.

As Lindsay and I take each day as it comes, as we tackle SMA as it thrusts itself into our lives relentlessly, as we recognize that there is something bigger at work here, we find ourselves grateful that there are people like Sue, and the many families who joined with her, to provide our family with a meal.  

We are grateful that God has placed them into our lives...thankful...to say the least.

The Dailey Method (by Lindsay)

Since Ella's diagnosis, we have been supported on so many levels and blessed in so many ways.  Sometimes it's hard to wrap our heads around the unbelievable generosity of others.

The Dailey Method is a workout that is a combination of ballet barre work, core conditioning, muscle strengthening, yoga and orthopedic exercises.  I had heard about it from a friend of mine, Kim (Ava took a ballet class with her daughter when they were two years old), who became an instructor at the Naperville location.  Other than that, I wasn't very familiar with The Dailey Method.

Last fall, we were contacted by Normal Moments (the organization that provided us with a weekly volunteer), telling us that The Dailey Method of Naperville would like to sponsor our family for Christmas (they usually didn't receive requests for specific families).  The Dailey Method of Naperville had heard about Ella (no doubt from my friend), and they wanted to help.

And boy did they help.

In addition to providing our children with the most incredible Christmas they could have asked for, Colleen (the owner of The Dailey Method of Naperville) gave Michael and I a free unlimited membership to her studio.

We were shocked.  We weren't expecting anything for ourselves, just the kids.  Colleen had come to our house to drop off the gifts for the kids and she stayed for quite a while getting to know us.  We instantly felt a connection.  At one point, Colleen said that she felt that she was meant to be a part of our family's life.

We thanked Colleen for her incredible generosity, and she went on her way.  Michael and I looked at each other, thinking, "Did that really just happen?"  We know how costly exercise programs could be.  After all, in the beginning of last fall, we joined a gym in order to help us gain the strength we will need to care for Ella as she grows.  But after only a month, we realized that it was not something we could support with our current budget, so we cancelled our membership.  So for someone that we just met to offer us something so incredible, it made us speechless.

We didn't start going to The Dailey Method right away.  With Ava and Henry's school pick-up/drop-off times and Ella's nap time, it was difficult for me to find a class time that would work in that schedule.  But recently (about a month ago), I decided it was time to make it work.  

The first class I attended was taught by Colleen.  When I arrived, I received the warmest welcome by her.  My friend, Kim, was also there :)  I didn't really know what to expect with this workout.  

All I can say is that it was HARD.  But hard in a very good way.  There were many exercises that I couldn't do.  Not because they hurt, but because my body was physically unable to do it at that point.

I was incredibly sore the next day.  But I kept going.  

The first week I went three times (that was my goal for myself, as I've never been much of a "workout" person).  But after those three times, I started to crave it more.  I felt so GOOD after a class.  Both physically and emotionally.  These workouts require a HUGE amount of concentration.  You have to focus entirely on what you are doing, which means it completely takes me away from anything else.  Any stress, fatigue, worry, etc. that I feel just slips away during these classes.

After those first three classes, I have been going almost every day ever since.  I love having The Dailey Method being part of my daily routine.  I've found times that work for our schedule, and I bring the kids with me (to the Kids Room) almost every time.  And they love it, too!  And every person who has worked in the Kids Room has been phenomenal (and impressed) with Ella!

In addition to the workouts being incredible, the people are amazing, too!  It truly is a family over there.  Everyone knows everyone else, and it is such a positive environment!  Every time I go there, I am greeted in the kindest way and I feel like I am such a part of this close-knit family.  It's absolutely wonderful.

Michael will soon be joining me in my daily doses of Dailey (this summer).  I can't wait for him to feel the many benefits of this workout!  Not only are we making ourselves physically stronger to help care for Ella, we are making ourselves emotionally stronger.

I will be forever grateful to Colleen and everyone else at The Dailey Method of Naperville.  I could never thank them enough for their incredible generosity that has helped me in so many ways.

Ella's Wheelchair Lesson...(by Michael)

Every so often Henry asks Ella if he can ride in her wheelchair.  She almost always says "yes".

The other day I watched him as he tooled around the house.  Each time he passed me he would smile.  He maneuvered the small 7lb micro-panthera chair quite well.  He enjoys his time in the chair, knowing he can get out of it any time he pleases.

As I watched him make his rounds and get himself into and out of some precarious positions I began to think of the experience he is gaining having a sister with such extreme special needs.  For Henry (and Ava alike) it's all they know.  Ella's disability is simply part of who she is...and they accept it without question or reservation.

I continued watching him.   My mind raced to the future...I imagined Henry in elementary school.  I imagined him having a classmate with a disability.  I imagined him being an advocate for that classmate.  The scene that unfolded in my mind placed Henry in a position he has found himself in at home with Ella.  A position that calls for him to be compassionate and caring, even for his own sister that he fought with moments earlier.  A position that calls for him to be helpful and sensitive to the needs and feelings of another.  It was a moment for me that filled my soul with pride for my boy.

Ella has taught us much in the 3 years she's been with us.  She has elicited our patience, creativity, and compassion.  She has demonstrated her perseverance and determination.  She has brought to our family an experience that few and far between actually get to have.  While our daily lives are hard, to say the least, and stressful, to put it mildly, along with being a bit scary in its uncertainty, we are graced with the experience of having to care deeply for a young girl who has challenges many of us would falter under...and in that experience we become more than what we were before her life began.  

Henry has come a long way over the past year.  He, too, has his challenges that became our challenges.  He, too, works through them, just as we all do.  He, too, will continue to face life as it comes to him...yet I feel he will face it with a somewhat different perspective than many of his peers.  I look forward to watching him develop into that strong, sensitive, caring man that I envision him being as I watch him play with the natural play of a child while in Ella's wheelchair.

Quickly Approaching...

The 7th Annual IL Walk-n-Roll is quickly approaching and we'd love for you to be a part of this spectacular event that raises money to help fund research for treatments and hopefully a cure for SMA.  

There are two ways you can participate (see links below).  General information for the event is as follows:

Walk-n-Roll

June 8th, 2013

Independence Grove Forest Preserve 

in Libertyville, Illinois. 

Registration starts at 8:30 am and kickoff is at 10:30 am

Below you'll find the direct links to:

"Donate"

(this is a donation to our team)

"Join Our Team"

(this will register you for the event as well as 

guide you to becoming a member of our team)

Click Here to see Ella's Home Page

(ELLAwareness for SMA)

We hope you can participate and as always, we are so very grateful for your support!

The Casten Family

Strength...(by Michael)

Summer is just around the corner. It's been a long winter.  We find ourselves fortunate that Ella made it through the winter without getting anything more than the sniffles and a cough.  We kept on top of her respiratory treatments, we did our best to keep Ava and Henry healthy, and people were cognizant of Ella when and if they had a cold and were around her.

It's hard to believe that Ella will be three years old this summer (June 10th).  To say that she has shown us much of what life is really about would be an understatement.  The challenges that she has faced, continues to face today, and will ultimately face in the future, have been handled by her with grace.  Watching her adapt to the disease housed in her body as she goes about her day is truly inspiring.  All too often we take our health for granted.

Lindsay started The Dailey Method just recently.  I will begin when school lets out for the summer.  From what Lindsay has told me and from what I can see with my own eyes it promises to be just the kind of workout that we need.  It will build our stamina, our core, and our overall strength.  

We need this type of strength.  A strength that will allow us to lift and "manipulate" Ella in a variety of situations.  A strength that will allow us to help her without hurting her.  A strength that will provide us with stamina to be with her, day in and day out and throughout the night.   A strength that will make sure we can not only take care of Ella as she grows but one that makes sure we can keep up with our other two!

The summer is fast approaching.  We have plans to do the 7th Annual Walk-n-Roll, celebrate Ella's 3rd birthday, attend the FSMA Annual Conference in Anaheim, CA (and while we're there visit Disneyland), celebrate Ava's birthday, as well as our 7th wedding anniversary.

Yes...we'll need the strength.