As many of you know, Ellie (age 7) is my third child and she has a rare chromosomal anomaly. Her anomaly is so rare that she is the only known living person in the world with her specific chromosomal difference. She’s a lot of work but she’s also a whole lot of love, and she continues to teach me many things and help keep things in perspective.
This was an Ellie week. On Monday I had her annual IEP, which is the time each year when I see, in black and white, just how developmentally and physically delayed she is. I live with her every day, so to me she’s just a big ball of love, but she doesn’t present that way on paper. Most caseworkers (or doctors, or clinicians) who meet her in person after seeing her chart or her file remark “Wow, she looks a whole lot worse on paper than she does in real life!” That doesn’t mean her delays and challenges aren’t real, but it means she presents well physically; she looks better because of her happy disposition and love of people.
Always one to look on the bright side of things, I chuckle to myself when the short list of Ellie’s strengths on her academic IEP always starts with “happy and social.” She has that part down; it’s all the other stuff where she scores, “extremely low.”
On Tuesday, Ellie and I were down at CHOP (Children’s Hospital of Philadelphia) for triple MRI (head, heart and hips) and a urology procedure. It was a good morning for both of us. She had mommy’s uninterrupted attention and love for a few hours before she was whisked away. Then, during her procedures, I had several hours to myself to reflect on what really matters in life.
During my alone time at CHOP, I saw a quote on the wall of the hospital.“While we try to teach our children all about life, our children teach us what life is all about.” To me, that really says it all. In her own way, Ellie continues to teach me (and everyone that has the opportunity to meet her) what really matters in life.
See, while we’re all caught up in the details of her IEP and her MRI results, Ellie knows that what’s really important are the most basic tenets of life: health and happiness. As long as she feels well enough to be her lovable self, and someone gives her attention…or maybe even claps hands with her, which is her favorite activity…she is all set. To a point, she tolerates all the wonderful doctors and therapists and case workers that try to figure her out and solve her “issues”, but through it all, she just finds someone who will clap with her. To her, that basic human connection—complete with a smile—is all we really need. That’s really what life is all about.
