A Delicate Road...(by Michael)

Her language skills have developed quite nicely.

Her ability to navigate social interactions continues to grow.

Her desire to participate increases daily.

Her awareness of herself and others is rising to the surface.

Up until now we have really had to confront, in terms of Ella, the physical aspect of Spinal Muscular Atrophy; the loss of muscle function, the disproportionate growth, the ever-present awareness of how to lift her, hold her, and keep her moving through space to gain that all important sense of kinesthetics.  We manipulated our house, our cars, our whole environment.  We've educated ourselves, Ava & Henry, our family, friends, and caregivers on the specifics of caring for Ella.  We've taken on new sleep patterns that resemble those of parents with a newborn child.  We've adjusted how we schedule our day's events to accomodate her feeding schedule.  The list of physical changes and challenges goes on and as time rolls into the future, the list will grow.

The psychological aspect of SMA has been challenging as well.  As adults, Lindsay and I can work through the psychological battles that SMA engages us in; we can and have taken steps to "put our oxygen masks on first" so that we can help our children.  We have sought out ways to work closely with Ava and Henry to ensure, to the best of our abilities, that they are well cared for in an environment that places many demands on them...probably too many for such young children. 

The time has come to really begin to look at ways to work even more closely with Ella and her psychological make-up.  She's a smart child, well adapted in her abilities to observe, communicate, and express herself.  She is becoming aware of her limitations in comparison to her siblings.  She is becoming more contemplative in her reactions to not being able to participate in certain activities.

We have a delicate road ahead of us.  One that doesn't rely on equipment or accommodations, but rather on an arsenal of psychological understandings, empathies, and determinations designed to guide her through difficult times as she grows. 

Times of loneliness and isolation.

Times of bitterness and anger.

Times of desperation and despair.

She's still a child at heart; a child in mind, a child in body...yet her body won't allow her heart and mind to fulfill their childlike desires of running, jumping, swinging, or climbing...not to mention actions we all take for granted such as combing ones' hair, dressing oneself, or even bathing oneself.

Our responsibility takes on a new dimension as she grows older; along with the typical child-rearing practices all parents are subject to we find ourselves also faced with a challenge that neither of us have any experience in dealing with.  

We are fortunate.

We are fortunate that God has gifted us with Ava, Henry and Ella.  We are fortunate that He has placed family and friends along our path.  We are fortunate that our Creator saw it fit to place, in Ella, the ability to psychologically grow in a way that lends itself well to us being able to parent her, nurture her, and provide for her, both physically and psychologically, for the duration of her life.  

The road is delicate...soft to the touch and fragile in its design.  We rely on God's love for Ella, our love for her, and the love of so many...