"Use all of your fingers." Five fingers.  Five words.  Repeated over and over from me to Ella.  I say it to her all the time.  She complies when I say it yet quickly allows the SMA to inhibit her "finger function"...she uses the pincer grip constantly. We stretch her hands, do OT type activities with her, and remind of how best to use those ten fingers on her hand.  Often I feel it is to no avail.  In the midst of being 4½ years old she hasn't the time to think about "proper use" of her hands.  She wants to play, to complete a task, to just be.  The easiest way for her to do that is to compensate for the debilitating SMA.   SMA.  Where on earth did this come from?  It was surreal when we first received her diagnosis and that hole in reality has matured into a crater in our lives.  Seemingly consuming all in it's circumference as it widens unending.  We step back out of the way, keeping Ava, Henry, Ella, and each ot...

Excitement filled their hearts.  Self-satisfaction permeated their being.  Achievement resonated throughout the house. Warmer weather brought with it the pleasures of the outdoors. Over the summer of last year Henry learned how to ride a two-wheeler.  Ava had not.  Ella stayed in her wheelchair. March, 2015...with determination both Ava and Ella ventured into the biking world.  Ava foregoing the training wheels and Ella taking seat upon her adaptive bike.   The video below shows you what happened.  In the words of a proud, happy Henry, expressing his joy over his sisters...  "Bike riding is like tasting 'chocolate cake with whipped cream'!!"   Henry (3/2015)

So we move forward. After receiving news that Ella has not qualified for the clinical trial we simply move forward. Each year, Families of Spinal Muscular Atrophy (FSMA) holds a conference that invites families with children suffering from SMA, the doctors who treat them, and the researchers who work tirelessly to find viable treatments and a cure for SMA.  It's an incredible experience to say the least.  We've attended one conference since Ella was diagnosed. During the short time we were there we found it to be one of the most special and enlightening experiences.  We found ourselves surrounded by families that are going through exactly the same things we are going through.  They understand, on a level that is elusive to most, the feelings and challenges we face as we journey through life with SMA.  The common ground that we share draws us closer to one another, nurtures friendships, and offers us unparalleled support.  The kids, too, walk...

I know what I say. I tell myself that there's a reason for everything.  I repeat in my mind that we must go forward. Now, however, my thoughts feel cold and my spirit erased. There's no other way to describe it. I know what I say...and I understand that this, too, shall pass. Yet for the moment, in the moment, a stifling numbness takes over.  A lack of control builds up inside.  A realization that while we're not any worse off, we're still looking for the light.   It seemed as though the light glimmered on our lives.  In a way, I suppose it did.  That twinkling of hope held an eternity of promises.  It mesmerized us; sang to us; brought us to it. Ella had an opportunity to be part of a clinical trial for an extremely promising medication that may hold a treatment for SMA.  The drug is called SMNRx and its function is to direct the back-up genes (that many people with SMA have) to produce full functioning SMN proteins (as currently the ...

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...