June 10, 2013 marks Ella's 3rd birthday. Looking back on the summer of her diagnosis, 2 years ago, feels like a short gaze. Much has happened since Aug. 12, 2011. Some heartbreaking and some heartwarming.
The diagnosis itself broke more than our hearts...it left an impression on our very existence that is constantly changing each day, each hour, each minute. The inflow of people, expressing their love and kindness, brought us from a depth of despair to a height of strength.
We watched our little girl struggle the first year after her diagnosis; taking the "SMA Plunge" early in her life by losing skills, mobility, and overall function. Twenty-percent of Type 2 kids take this "plunge" early in life while the other 80% take it later in childhood. As she traversed this frustrating, debilitating time, she always smiled...she always was strong in spirit.
Ella's awareness of her disease began to creep its way to the surface of her reality over the past 8 months. Despite the limitations that she has become keenly aware of, she knows how to ask for help in a way that elicits it from all walks of life, all ages, all creatures (Sasa helps tremendously!).
Play is a challenge to orchestrate. A degenerative neuromuscular disease presents ongoing hurdles to overcome, for the one afflicted as well as for the caregivers and siblings. Through creativity, ingenuity, and perseverance we, as a family, have done well to adapt our surroundings and expectations to fit the needs we must fill...for all of us.
Activities of daily life, including dressing, bathing, hygiene, eating, and simply moving around, take considerable energy and strength from all. Through discovery of adaptive equipment, exercising, and knowing that we must do what it takes to care for our child, Lindsay and I make it through each day. We are usually exhausted, physically and mentally, as we sit to reconnect after the kids are in bed.
She falls. Not unlike any other toddler..with one exception...she cannot stop herself. She cannot brace herself. She is at the mercy of gravity...100%. After tears are wiped away and a good long hold-n-hug has commenced she always wants to try whatever it was that precipitated the fall once more.
Her bravery is admirable. Her perseverance tireless. Her love of life infectious.
Through it all she has Ava and Henry...by her side...laughing, playing, crying, fighting, teasing, consoling, sharing, and singing.
And at least once a day, usually many times a day, Ella tells us that she loves us.
