Three Angels in our Lives...

A Kiss on the Cheek...(by Michael)

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 occasionally she'll tell us that she loves us.  

Her self-awareness that she is dependent on us for many things is growing and maturing.  She talks to us about the best way to hold her as we stand her up in the bathroom getting her ready for her business or just thereafter.  We try different ways and she knows that mommy and daddy do it in  slightly different ways...she's ok with that.  She is increasingly aware of her condition; often times speaking of how she can't wait for the doctors to "take the SMA away".  She expresses her anger and frustration about having the disease and will ask us why it has to be her.  Conversations ensue, often tears mingle themselves in, and invariable hugs close the conversation as we get back to the business of life.  

Her self-awareness is coupled with exploration in that she knows many of her limitations yet she is willing to thwart them in the name of conquering SMA.  She has a pride unmatched when she does something that she previously could not do or had lost along the way.  She allows herself to fail over and over until she finds the strength, agility, and process by which she can accomplish her goal.  When she is faced with a "brick wall" she simply asks for help, without shame, without reservation, without feeling indebted.  She knows we are here to care for her.

It's hard for us to imagine life without SMA...it has permeated our very existence and resides in our daily & nightly lives.  It's draining, to say the least, on physical, mental, spiritual and financial realms.  It takes so much more than it gives. Getting that heartfelt kiss on the cheek throughout the day helps ease the pain of SMA and provides a reminder of what it is we are to do.

There may be a day when they find a treatment or even a cure for this disease.  The entire SMA Community is sitting on edge as human clinical trials are currently underway.  Until that time though, we go through each day as it comes.  We do what we must in order to keep our child alive and well.   

Distractions...(by Michael)

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 hugs. Often times we overlook our pets’ basic needs in the name of raising our family...yet they are part of our family just as much as any other member. And while they do need food, shelter, and exercise, they also need love and the reassurance of the human touch.

We’re usually pretty good about paying attention to Sasa. Now that the kids are in the early years of school they are learning to appreciate all Sasa has to offer. They love her dearly and vice-versa. 

I suppose on those days when the demands of our life distract us from Sasa she really does feel it...and it took Ava’s innocence to bring that to light.