Isn't God Strong?...(by Michael)

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 replied, "Yes, very strong."

"Super strong?  Like--stronger than anything?" she continued.

"God is all-powerful." I replied.

"If He's so strong, why can't He stop the SMA?" she quizzed me.

This question was harder than the first one from a few days ago.  As if on automatic pilot I continued to help her with her task.  My eyes fixated on the corner of the room and my mind cleared itself...waiting for an answer that I could relay to her.  

"He can stop it." I said.

"Then why doesn't He?" she persisted.

Again, the questions are getting a bit harder with each exchange.  She looked at me and I saw in her eyes the need for an answer...an answer that would give her something to hold on to.  

"He is." I found myself telling her.

"He is??" she asked,  "How?"

"He's using the doctors to help Him do His work." were the words that rolled off my tongue.

Without missing a beat she came back at me with her little voice, "Why does He need the doctors if He's strong enough Himself?"  

"Because He wants us to try and be strong, just like He is." was my response.

"So because He's strong, He want us to be strong, too?" she surmised.

"Yes.  He does." I confirmed.

"OK" she said.

From there the conversation changed as quickly as it came.  

She found her answer and I found out that He was right...the Spirit will guide us in all things.

Johnny's Gift...(by Michael)

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' cousins "group" has significant special needs...namely, Ella.  Her diagnosis of SMA has been part of the cousins' life in ways that we may not begin comprehend.  It's amazing to watch them as they interact with her, especially watching it develop over the past few years.  They are gentle, understanding, compassionate, and mindful to include her.  They do not allow her disability to interfere with their relationship with her and seemingly see right past it.

They can also be empathetic at times.

One of Ella's cousins (Johnny) who is just a few years older than her loves to play with Ava, Henry, and Ella.  He loves creative play and has developed a good sense of fair play.  As he engages in what cousins do best it obvious that he is enjoying himself.  But there's something that is not so obvious, at least not until now.

Empathy coupled with selflessness.

Apparently Johnny's teacher gave him and his class an assignment.  It was a rather creative, thought-provoking assignment (those are the best kind!).  The teacher asked the students to answer the following question:  "If you could be a gift to somebody, what would you be?"

Naturally one might assume that a child of Johnny's age might struggle a bit with this question.  It asks the child to step out of the "concrete" way of thinking and enter, ever so slightly, into the "abstract".  It forces the student to grapple with what a gift means and how they can impart that gift to someone else...it requires that the student step outside of the innate egocentric nature of children and enter the empathetic nature usually reserved for those older than them.   

Johnny took this opportunity to show us what cousins are truly made of...his response to the assignment was that he'd "like to be a 'gift of legs' for his cousin, Ella---because she can't walk and sometimes she feels left out when we are all playing and she can't do some of things we can do."

An incredible thought.  A compassionate act.  A demonstration of how children are so often the lights of this world...how they can be examples to follow.  

With that kind of love surrounding Ella, even from thousands of miles away, with that kind of love that only a cousin can impart, it's no wonder she thrives---despite the SMA.

Johnny & Ella
Christmas, 2014