Arboretum Fun...and Balance (by Lindsay)

Today I took the kids to the Morton Arboretum.  It's one of our favorite warm weather places and is only about 15 from our house.

I love the Arboretum for many reasons.  It's beautiful, for one.  And they have an incredible Children's Garden for the kids to explore!

But mostly, I love the Arboretum because it is a great place for a 300 lb. power wheelchair :)  Ella is free to cruise around as she pleases and she can access almost everything.

Almost.

We're finding lately that it can be a little challenging finding a place for all three kids to enjoy.  Playgrounds are getting a little tricky because Ella wants to go on everything (why wouldn't she?), but she's getting harder to assist when doing certain things (i.e. slides, monkey bars, etc.).  There are a few handicap accessible playgrounds in our area, which are great for her to cruise around in her power chair (like the Arboretum), but she still wants to climb and slide like Ava and Henry.

At the Arboretum today, if Ella's power chair wouldn't work for an activity, I could almost always take her out and carry her.  

I carried her across some of the tree house's wood bridges and also up to the lookout platform above the maze garden.  And I held her body with one hand and her head with the other, while I dipped her low enough to play with the smooth stones in the water play area.  

But there were some activities that we just couldn't do.  

Like climb up a ladder to then cross the rope bridges.  Or crawl across the spider web-like ropes.  Or take off our shoes and wade across the wet slippery rocks in the wonder pond.

But Ava and Henry wanted to do those things.  And they can.

So I was faced with the dilemma of allowing Ava and Henry to enjoy those activities while Ella sat and watched, or tell Ava and Henry that they couldn't enjoy the things that most other kids are able to enjoy.

Ugh.

Ultimately, I let Ava and Henry do two of the activities that they wanted to do.  However, I decided not to let them wade across the slippery rocks of the wonder pond because I knew that would be very upsetting for Ella to watch, as she desperately wanted to go in the water.  And I don't think she would have understood how dangerous it would have been for me to help her walk across those slippery rocks.

Luckily, while Ava and Henry were climbing across the spider web-like ropes, Ella was cheering them on from the sides.  And when they went up the ladder to cross the rope bridges, Ella and I waited at the end, looking at pictures of the Arboretum on my phone that I had taken so far during the day.

So I think it ended ok.  Ella didn't seem too upset about not being able to join her brother and sister those two times (although she did ask).  And Ava and Henry weren't too upset about not going in the wonder pond.  And all four of us had a great time overall at the Arboretum :)

I guess it's all about balance.

Here are some pictures from our day:

Petting a bearded dragon

Ava and Henry climbing across the spider web-like ropes

Ella playing the flower xylophone

Ava and Henry finishing their descent along the rope bridges

Love these kids :)

Always smiling :)

In the Maze Garden

The lookout platform above the Maze Garden (Ella is STANDING!!)

All done for today :)

The Work of Ella...(by Michael)

The complexities of the human body are astounding.  The ability for adaptation and compensation is what helps keep Ella functioning in the world.  The world, however, is a complex place.  It is full of tasks and things to accomplish.  The human psyche, with its need for independence and self-worth, interacts with the world's demands in order to fulfill itself.  We grow.  We mature.  We become self-sufficient.

The challenges of SMA are wide spread.  From nutrition issues to breathing ones.  From muscle deterioration to psychological battles.  From adapting to accepting the limits.   Physically, mentally, socially and spiritually--one stricken with this terminal disease faces challenges in each arena.

Ella is no exception.

She's three now.  She's more aware of her self as a person.  She is more aware of the SMA that challenges her on a minute by minute basis.  She realizes that she has to work harder than most to accomplish the simplest of tasks.  She is learning how to use what she has in order to access the world.  The learning will continue.

Ella has started therapies with Easter Seals this summer.  She goes to PT (Physical Therapy), OT (Occupational Therapy), and Aqua Therapy once a week for each.  Her Physical Therapist also works with her during Aqua Therapy.

The work done by the therapists through Early Intervention has set the stage for the continued therapies.  Ella learned much from her former PT and OT and she grew attached to them.  Her new therapists show a promise to continue and expand the good work already laid down.

I watched Ella in each of her therapies this week.  Again, I gained a new appreciation for my three-year old daughter with SMA.   I watched as she sat quietly taking in the new environments and new therapists.  I watched as she warmed up to both.  I watched as she focused on her tasks and put forth great efforts to accomplish the goals set forth for her.

I watched as she struggled.
I watched as she succeeded.
I watched my little girl fight against SMA.

I invite you to take a moment...and watch...

The Happiest Place on Earth (by Lindsay)

A life changing experience.

I honestly don't know how else to describe our trip to Disneyland.

From the moment we arrived at our hotel, we felt like we entered into a fairy tale.

The weather was perfect.  Our accommodations were incredible.  The entire atmosphere at the resort was unbelievably positive.

But it wasn't until that first morning after we arrived, that I was truly overcome with joy.

It was when we went to check-in at the FSMA Conference registration.  That was when I was blown away.

We weren't the only family there.  There were others.  Many others.  Other parents.  Other children.  Other families.

Families just like us.

For the first time since Ella's diagnosis, we felt normal.  At this conference, it was normal to be affected by SMA.  And it was OK.

I could never put into words how incredible that felt.  How full my heart was with the purest joy.

And I've never seen Ella as happy as she was.  There is no question that she felt it, too.  She fit in.

The conference was amazing.  There were several social gatherings and many workshops to attend.  We learned so much from the presenters as well as the other families!

We were honored to be able to meet many of the top clinicians and researchers working diligently to find a cure for our children!  I was totally star-struck :)

And then there was the Kids Room.  Oh. My. Gosh.

The Kids Room was a GIANT room filled with many, many tables.  Each table was covered with toys and activities that kids could only dream of!  There were arts & crafts, dollhouses, playdoh, Wii stations, bubbles, movie stations, cars & trains, and the list goes on and on.  They also had a HUGE room for infants with Bumbo chairs, Boppy pillows, Pack n' Plays, and all of the baby toys you could imagine!  And if that wasn't enough, they had performances by magicians, puppet shows and storytellers!

And the entire Kids Room was run by volunteers.  Some of the most caring and loving people I have ever had the privilege to meet.

So while Michael and I attended the many workshops, Ava, Henry and Ella had the time of their lives in the Kids Room :)

We had the most incredible time during the conference and we were very sad when it came to an end on Sunday morning.  We knew those feelings of "fitting in" would quickly fade.

But we still had a few more days to spend at Disneyland Park and California Adventureland Park, and we were all very excited!

We were able to make it to each of the rides and attractions that we wanted to do and we all had a blast!  Everything was so magical, and I definitely got tears in my eyes a few times :)

When it finally came time to leave, all five of us felt the same.  We didn't want the magic to end.  But throughout the conference, we were filled with so much joy and inspiration that we think it will carry us through to next year's conference in Washington, D.C.!

We took so many pictures throughout our trip, so rather than posting them all here, I made a little video capturing our magical moments...enjoy! :)

It's Always There but So Are We...(by Michael)

The reality of SMA never really escapes us. 

The room fell silent and the air was sucked away by the gasps of disbelief.

The night before the FSMA Conference ended, a young child passed away (he and his family were at the conference).  We were told the devastating news just moments before the closing workshop, which was to be about the research being conducted to find treatments and hopefully a cure for this disease.  

Our thoughts and prayers go out to this family...

The reality of SMA never really escapes us. 

The FSMA Conference was an incredible experience, to say the least.  It provided us the opportunity to meet other families who have, and are, experiencing the same life circumstances that we are experiencing.  It provided an unprecedented opportunity for Ava, Henry, and Ella to grow.

The reality of SMA never really escapes us. 

Before the Conference, Ella did not particulary like using her power wheelchair.  While at the conference it was her only mode of transportation.  Upon seeing so many other people in power chairs she quickly became attached to hers.  Her skills, confidence, and self-esteem flourished as she was happier in this setting than we have ever seen her before.

The reality of SMA never really escapes us. 

Ava and Henry were surrounded by kids with SMA as well as unaffected kids.  They spent hours playing, talking, and interacting with kids that are going through the same things they are going through.  They found comfort and a new appreciation for their position in the family.

The reality of SMA never really escapes us. 

Lindsay and I learned much about SMA and ways we can better care for Ella.  And while the reality of SMA never really escapes us...we have a rebirth of hope, a new found appreciation for our youngest child as well as our older two, and a rekindled sense of optimism.  

We stepped into a world filled with SMA and all that it entails...lived amongst others, if only for a short while, who are feeling the same way we are; looked at our daughter Ella with new eyes--making the reality of SMA seem small, if not distant.  And while we know the ultimate reality of SMA still lurks--it comes up against the force of those passed, those now present, and those who are to come.  It comes up against the loving force of family, friends and strangers...all seeking to give people affected by SMA a chance.

_______________________________

Disneyland provided an added experience that will go unmatched.  Look soon, for a more detailed account of the entire trip complete with pictures...!

Destination: Disneyland (by Lindsay)

We are taking our first big family trip!

We're going to Disneyland in California!!!

Every year, Families of SMA (FSMA) holds a conference for the families who are affected by SMA; doctors, researchers and other professionals will also be there.

We were unable to attend the conference last year (it was held in Minneapolis, MN), but this year we started planning our trip last fall as soon as we heard that it was going to be at Disneyland!

At first, Michael and I thought it would be best for just Ella and us to go.  After all, what would Ava and Henry do at an SMA conference?

But then, I was talking with our friend, Rachel Sepe, who is also going to the conference (her daughter, Scarlett, has SMA and is a good friend of Ella's), and she strongly encouraged us to bring Ava and Henry as well.

Rachel also has two older children (Isabella and Gavin, both unaffected by SMA), and they had a blast at the conference last year!  Rachel told me that there are so many activities for all three of the kids to do while there!

So that settled it.  We decided that our entire family of five would head to Disneyland :)  

We'll be flying to Los Angeles.  The conference runs four days at the Paradise Pier Hotel in Disneyland.  We decided to stay three extra days after the conference so that we can spend more time at the parks, and then we'll fly home.  

We've never taken a trip like this with the kids before.  To say we're excited would be an understatement!  

As excited as we have been, I was really stressed out at first.  How do you travel with someone with needs such as Ella's?  And all of her equipment???

But we've talked to a lot of people and we've made a lot of phone calls.  And everything is falling into place.

We will have escorts when we arrive at the airport who will take us from the curb all the way to our gate, which will be a HUGE help.  Some of Ella's equipment will be checked, while some will be going with us on the plane in case of an emergency.  Luckily all five of our seats on the plane are in a row :)

We have a handicapped shuttle reserved for us for when we arrive in LA that will take us to the resort.

Our hotel room will have plenty of room to accomodate our family of five as well as all of Ella's equipment.  We are so happy that FSMA booked the conference at the Disneyland Resort!  

We've put a lot of effort into preparing for this trip, but I'm sure it will ALL be well worth it!  

We're so excited to meet many other SMA families in person and to create memories that will last a lifetime!!

June 10, 2013...

HAPPY BIRTHDAY

ELLA!!!

Ella Sabine Casten
Born:  June 10, 2010

She's Got a Friend in Them...(by Michael)

June 10, 2013 marks Ella's 3rd birthday.  Looking back on the summer of her diagnosis, 2 years ago, feels like a short gaze.  Much has happened since Aug. 12, 2011.  Some heartbreaking and some heartwarming.

The diagnosis itself broke more than our hearts...it left an impression on our very existence that is constantly changing each day, each hour, each minute.  The inflow of people, expressing their love and kindness, brought us from a depth of despair to a height of strength.

We watched our little girl struggle the first year after her diagnosis; taking the "SMA Plunge" early in her life by losing skills, mobility, and overall function.  Twenty-percent of Type 2 kids take this "plunge" early in life while the other 80% take it later in childhood.  As she traversed this frustrating, debilitating time, she always smiled...she always was strong in spirit.

Ella's awareness of her disease began to creep its way to the surface of her reality over the past 8 months.  Despite the limitations that she has become keenly aware of, she knows how to ask for help in a way that elicits it from all walks of life, all ages, all creatures (Sasa helps tremendously!).

Play is a challenge to orchestrate.  A degenerative neuromuscular disease presents ongoing hurdles to overcome, for the one afflicted as well as for the caregivers and siblings.   Through creativity, ingenuity, and perseverance we, as a family, have done well to adapt our surroundings and expectations to fit the needs we must fill...for all of us.

Activities of daily life, including dressing, bathing, hygiene, eating, and simply moving around, take considerable energy and strength from all.  Through discovery of adaptive equipment, exercising, and knowing that we must do what it takes to care for our child, Lindsay and I make it through each day.  We are usually exhausted, physically and mentally, as we sit to reconnect after the kids are in bed.

She falls.  Not unlike any other toddler..with one exception...she cannot stop herself.  She cannot brace herself.  She is at the mercy of gravity...100%.  After tears are wiped away and a good long hold-n-hug has commenced she always wants to try whatever it was that precipitated the fall once more.

Her bravery is admirable.  Her perseverance tireless.  Her love of life infectious.  

Through it all she has Ava and Henry...by her side...laughing, playing, crying, fighting, teasing, consoling, sharing, and singing.  

And at least once a day, usually many times a day, Ella tells us that she loves us.