I sat down next to Ella. She was on the couch, wedged in the corner for support, unable to really move from the spot.  We talked a bit, my iPad on my lap.  We played a game together (Angry Birds). My mail program "dinged" and I received a message from www.curesma.org.  The article was about the current clinical trials that are moving forward these days.  In a nutshell they have made wonderful progress with the intravenous injections of the gene therapy approach!  They are looking forward enthusiastically to the CFS (cerebral-spinal-fluid) injection approach...which has great potential. This isn't really new news in our house.  The SMA Community looks eagerly to the folks heading up this research, our fingers crossed, prayer lifted, and hopes ignited.   This hope...ignited by this research...is what keeps us going day in and day out.  We look to the promise of a horizon void of SMA; a sunrise of the day when this disease no longer robs our chil...

There are so many things I do every day that I had simply taken for granted.  When I wake up in the morning I swing my legs and feet to the floor and stand up.  When I leave the house and forget something, I quickly run back inside, retrieve the forgotten item, and go on my way.  If I need something from a cupboard or shelf, I simply reach for the object, grasp it, and bring it toward myself.  The list of what I took for granted can go on and on. Ever since Ella's diagnosis of SMA I have had the rare opportunity to help someone who cannot take the "everyday things" for granted.  In fact, many of those things elude her.  We find a way though. Through perseverance, creativity, and the selfless acts of others, we bring the world to her.  In that bringing comes the experience of providing for another the things most of us take for granted.  In that bringing comes the sharing of skills and talents.  In that bringing we have found that there are...

A peek at how much Ella has grown  over the past few months...

People often say that Spring and Fall skip by too quickly.  They say it feels like those two seasons are getting shorter. Maybe it is about actually taking time to notice the subtle changes that occur during these two seasons.  One seems to produce life while another slips away with it.  Spring offers sights and smells that wake the dulled winter senses and Fall creeps away beautifully with the greens of summer. On our wedding day Lindsay and I made it a point to actually take in the moments, recognize them, and place them in a special place that day.  It was told to us that the day "will whiz by" and "it will all seem so surreal".  We took that information and made every attempt to make the day last.  In doing so we still have incredible memories...it doesn't feel as though it whizzed by because there are so many moments we carved into our hearts that day. As Ella grows it once again seems as though things are moving so fast.  She is surp...

"Why do you have the wheelchair?" she asked a matter-of-factly. "I have the SMA and I can't walk by myself." replied Ella in the same tone. "The what?" was the inquiry. "The SMA," said Ella, "God made me with SMA and I can't walk by myself." Her eyes fixated on the chair, glanced purposefully to Ella's legs, then met Ella's eyes.  "Oh," was her response.  The two girls sat in silence for a moment or two. "I like Doc McStuffins."  said the girl. "Me too." replied Ella. "I like your wheelchair.  How does it work?"  the girl inquisitively asked. Ella made a friend.  They sat and played school on the pavement.  Went to the playground and enjoyed each other's company.  They learned about each other...just a little bit, but enough to keep their interest in one another alive. They played tag.  A game that can be difficult for a person in a wheelchair who has...

After 9 days of intense therapy in treatment, I am now home from Linden Oaks. It was a rough 9 days.  I hated being away from Michael and the kids.  But I knew that it needed to be done. I learned a lot.  I became more in touch with my feelings. And most importantly, I broke the unhealthy eating cycle by retraining my body to eat healthy portions. While the eating disorder is now under my control, I still have to work on staying in control. So now I move forward towards recovery.   Through all of this I felt your love through prayers and kind words.   And we want to thank our family and friends who helped Michael this past week!  We are so blessed to be surrounded by such incredible support.  You are all amazing! We are now approaching the start of the school year for Michael and the kids, which means we'll be getting into more of a routine that I am definitely looking forward to.  Fall into early winter is my favorite time of ye...

We waited in the waiting room for what seemed like an eternity.  Just Lindsay and me.  It's not often that we get to spend uninterrupted time together; silent time; reflective time. We talked about her eating disorder, SMA, my work as a teacher, and iPhones. The waiting is over and Lindsay has checked herself into Linden Oaks to pursue professional help for her eating disorder.  She says ED is beginning to spiral out of control and knows she needs to "break the cycle". I missed her dearly when she went to Linden Oaks two years ago.  I will miss her even more this time 'round since my love for her has grown.  I know she must do this for herself and our family.  I also know an eating disorder is a complicated, complex disorder that few can truly understand, unless of course, you've experienced it first-hand. The road to recovery from an eating disorder is a long, fragile journey.  She will travel through it with grace, dignity, and strength...an...