Ella has asked me certain types of questions twice in the past week.  Each time she inquires of me it's always when we're alone and I'm helping her with some daily activity of life. "Why did God make me with SMA?" was the first question she uttered.  Of course, I hadn't an answer right at that moment...probably because I'm not too sure myself.  My answer came quickly saying, "I'm not sure, honey."  I continued to help her and she carried the conversation in a different direction...I obliged. Then, not two days later, she began to ask the same question.  But I suspect she knew what my answer was going to be so she stopped mid-question.  This time though, at least as she began to utter her words, I felt that I had to provide more than a "I'm not sure, honey" response.   But her words stifled in mid-air and she quickly changed the question to, "Isn't God strong?" A bit surprised at the question I replie...

Both Lindsay and I have wonderful memories of cousins from our respective childhoods. As I was growing up, I was surrounded by cousins from both sides of my family.  Traveling to Joliet, Niles, Evanston, Indiana and even Boston afforded me an opportunity to get to know my cousins and to play with them. Lindsay had the great fortune of seeing her many cousins often as she and her family spent holidays and vacations together.  They forged lifelong relationships that permeate their existences today, bringing all of them a sense of pleasure, nostalgia, and love. Ava, Henry, & Ella have their cousins, too.  From our hometown of Naperville to Chicago and out to Virginia there are special kids that surround ours.  Ages may vary among them but the connection they share with each other is indicative of the connection only cousins can have. One difference between Lindsay and my cousins in comparison to our kids' cousins is that one of the members in our kids' cous...

As our kids develop so do their needs, their interests, and their curiosities.  One positive aspect of SMA is that it does not hinder its victims mentally.  They are allowed to grow and mature alongside their peers and siblings, without missing a beat. With this mental development come many aspects of the human experience.  Self-awareness and exploration being two of them.  Ella is becoming no stranger to these facets of life and she acts upon her new-found "mentality" full force. Lindsay and I are still carrying Ella.  We carry her to the bathroom, we carry her upstairs, we carry her from the bath to the changing table, we carry her to bed.  We carry her downstairs to the basement for play, and carry her every time she needs to move and her wheelchair won't suffice.  While she is in our arms she often times takes the opportunity to give us a kiss on the cheek...sometimes several.  Most of the time words are absent from the kiss yet occasion...

She followed us all day long. She never really let us out of her sight as she whined about this and whimpered about that. We made sure a good amount of nutrition was given to her and that she was hydrated. We went about our daily routines hoping that she would find her way back to “normal” soon. We went for a walk thinking maybe some fresh air and movement would do her some good...to no avail. Evening came, and soon after, dinner was coming to a close. She still acted strangely as the plates were being cleared, the glasses being rinsed, and the food put away. “Maybe she needs a hug?” inquired Ava. I squatted down to meet her at eye level and said, “C’mere Sasa”. She ducked her tail under and nuzzled her face into my body. Lindsay, Ava, and I gave her hugs for a long time. She went from one to the other several times over the course of 15 minutes. Upon completion of the “hugging” session she was just fine. I find it amazing how Ava so naturally knew that Sasa needed some ...

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...