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 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 mo...

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 ...

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. ...

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 activit...

HAPPY BIRTHDAY ELLA!!! Ella Sabine Casten Born:  June 10, 2010

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 t...