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...

Lindsay and I sat in Ella and Ava's room after we got Ella from her nap. It was dimly lit by the afternoon light sneaking its way through the venetian blinds. Ella cooed her hellos as she does when she wakes from her nap to find both mommy and daddy looking down at her in her crib. I picked her up and we greeted her with our kisses and touches of affection. She happily accepted, being well rested, and motioned to sit on the floor with her books. Lindsay sat on the bed and I in the rocking chair. We looked at each other. There was a moment of silence. It was peaceful for a brief moment; the world outside made its presence unknown. It was different from any other silence we have experienced together. Lindsay spoke first. She uttered the words that have been recently swirling in and out of my own thoughts. When those words left her mouth and travelled across the small room, reaching my ears and grabbing hold of my thoughts, I couldn't help but stare deeply into her e...

That's how I feel most of the time. A constant knot of unease in my stomach. The kind of sick you feel when you can't stop worrying about the future, both near and far. The kind of sick that prevents you from falling asleep at night. The kind of sick that causes you to lose more than 30 pounds in a matter of months without trying. Now that the reality of SMA is starting to sink in, we're faced with not only the innumerable medical hardships Ella will face as well as the thought of losing her, but we're beginning to feel the stress of drastically changing our life as we know it to meet her needs. Among other things, a wheelchair... Not just any wheelchair, but a 300 pound power wheelchair. It will be an incredible piece of equipment for Ella. We can't wait to see the joy in her face the first time she tries it. Her physical therapist has stressed to us how important it is for Ella to be able to move around independently, both for her emotional and cognitive develo...

Coming to grips with a diagnosis of Spinal Muscular Atrophy (known as SMA) has just begun for our family. We sit in wonder of the complexities of the human body; the delicate dance that nature has instrumented in all of us. We cry over thoughts that seem to overwhelm us without warning. We leave rooms full of people to try to gather our minds and once more step into reality. We defend ourselves from the twisting knot that travels from our stomach to our heads. We look at Ella with a deep gaze that somehow penetrates the walls of SMA and brings us closer to our daughter; to our children. We teach Ava and Henry how to be gentle while still treating her like their sister. We let go of small pieces of dreams we had not so long ago and seek other dreams to grab a hold of. The lumps in our throats that form when we talk about Ella in terms of SMA cannot be quelled by anything except time. Coming to grips is a long way off as we see it. The SMA hovers; at times hi...

Submitted by Lindsay... Today Ella got her new AFOs (Ankle Foot Orthotics). To say we've felt mixed emotions about this day would be an understatement. On the one hand (a very large hand), we're getting something that will help Ella. The orthotics were custom made to hold her feet and ankles in the right position for proper development, as well as provide support for her ankles while we work on standing. She also got knee immobilizers, which will hold her knees straight while she practices weight bearing. All around, these devices will be wonderful for her. For Ella. But what about for us? Her parents … Seeing Ella in these "braces" will put an image with the disease. It will make the disease much more real for us. It will make Ella look "not normal." And what about when we go out? Will people stare? Will they ask questions? I took Ella to get some shoes to wear with her AFOs (not an easy feat), and luckily I went to a specialty children'...

On Tuesday, Ella had her first occupational therapy session. I was going into it with mixed emotions. We've had such an incredible experience so far with Early Intervention, and we absolutely adore Ella's PT, so I was thinking that there's no way we could be so lucky to get two outstanding therapists. I was wrong. Ella's OT, Aditi, is so knowledgeable about neuromuscular diseases. She is so caring and compassionate with Ella. We felt very comfortable with her from the moment she walked in our front door. Aditi was very impressed, and somewhat surprised, with how strong Ella is. She said she was expecting her to have a lot less function than she did. Of course, we were encouraged by that :) She explained to us about Ella's lack of "sensory" input from her muscles. Ella can feel anything and everything that touches her, however, because of her disease, she is unaware of her body position without seeing it. She said that if we close our eyes, we know ou...