I sat in my classroom at my desk this morning, preparing for the day's lessons.  The room was quiet, only the clicking of my keyboard filled my head alongside the thoughts of what I was planning for the day's lessons as well as the ever present thought of my family. From the hallway there was the usual flurry of occasional activity as teachers and 5th graders (getting ready for patrol duty) rambled through the building and past my room.   As I completed putting a thought onto my screen I heard a faint knock on the door and then the voice of a young boy, 10 years old; one of my former students from last year say, "Mr. Casten". I turned and was a bit surprised to see him as he stood in my doorway.  On any other day his face was usually bright, carrying a smile only he could pull off, his eyes usually twinkled their blue color against his somewhat overgrown blond hair.  He, being the person he is, usually is quite animated...all of these qualities of the boy d...

Through every waking hour my mind is always filled, SMA never takes its leave. but for a moment I am still. I walk the path before me, travelling hand in hand. we trip and fall; we look to others, but for a moment I am still. The feelings come in waves, the joys, the tears, the puzzling why. plenty are emotions, but for a moment I am still. The world out there is filled with souls, traversing their own way. behind their eyes we may never know what tears them up inside... but for a moment I am still. When streaming past the fallen leaves, while trudging through the snow, as summer breezes kiss your face, and springtime again is known, take the time to hug your child, to kiss them tenderly... let your inner child delight in you... but for a moment just be still I am still. still as thoughts surround my head. still as walking paths we take. I am still as waves of me spill out. still as others find their way. I am still as I hold my children near. Fo...

A roller coaster of emotions. It is almost impossible to handle. But the ups are what get us through the downs. Ella's micro wheelchair has been a great addition. We're pretty sure we're going to get one for her (the one she has is a demo and she only gets to try it for two weeks). She's getting a little better at maneuvering it. She still can't turn or back up (when she runs into things), but I'm sure it will come in time. She's not quite strong enough to propel herself on the thick, plush carpet, but it's easy enough for us to change the flooring in those areas for her. This wheelchair has been a major "up" for us :) We took Ella to see her neurologist, Dr. Silver, earlier in September. We scheduled her to go to his MDA Clinic at Shriner's Children's Hospital in February (that was their first opening). Since her appointment with Dr. Silver, we've noticed some definite regression with Ella's strength. She's starting ...

We attended an SMA Fundraiser for a young girl in Naperville. Her best friend has, for the past five years, put together an event for her friend with SMA. When we signed up to attend, we e-mailed back and forth with the parents of the best friend, sharing thoughts and words of anticipation for the upcoming event. We were excited while at the same time, apprehensive. The reality of SMA would surely be surrounding us at the event. For the first time...we are leaving the privacy of our own home and venturing out into the world of SMA. Early in the morning we received an e-mail from the mother of the girl with SMA asking if they could show the "Ella SMA Awareness" video we created earlier this week. We, of course, agreed...humbly. Walking into a roomful of people, not knowing anyone personally, yet being recognized by many, was an experience we had never had before...for the first time we were welcomed into a world that, 3 months ago, we never even knew existed. People ...

This one is for you. While words can be eloquent, they are inherently limited. Experiences are the most powerful influences to us. We invite you to view deeply the video that Lindsay has created. Created for you~to experience Ella in your own way. We ask, with sincerity, that you share this video with as many others as you see fit. We know, from the depths of our existence, that we can help cure Ella and all the people affected by SMA... Click here to go directly to the YouTube video.

September, 2011 Dear Ava & Henry, The picture above was taken at your Thea Lillian's house in New Buffalo, MI on a crisp, clear Fall day.  I love this picture because it shows my three beautiful children looking out into the world.  A world that is very different from the one your mother and I grew up in. As you three look out over Lake Michigan, I can't help but feel a sense of awe for both of you.  You are young in this photo...Ava, you're freshly 4 years old.  And Henry, you, my boy, are just about to turn three.  Your sister, Ella, is 15 months old.  When this picture was taken we had known about Ella having SMA for just over a month.  In that time we have felt much of the human spirit.  We have felt the love and support of family, friends and strangers.  We have watched both of you respond in your own ways to what you understand to be happening with your sister. Ava~~We delight in how you cradle Ella in your arms, call ...

During physical therapy this past Tuesday, Ella's PT (Lynda) told us that it's time to officially start the process of getting Ella a stander and power wheelchair. We were hoping that her AFOs and knee immobilizers would help her enough to spend a good amount of time weight bearing, but unfortunately, she can only stand (with assistance) for a few minutes at a time before her torso starts weakening and she can't stay upright. Ella standing very well while wearing her AFOs and knee immobilizers. Lynda said she needs to be standing 2-3 hours a day to help her bone growth and respiratory health. So she'll need a "stander", which is basically a large piece of equipment that she straps into in the standing position so she can bear weight without having to worry about controlling her legs, waist, trunk muscles, etc. As long as she will be evaluated for a stander, we might as well start the process of getting her the power wheelchair, since that takes quite...