While visiting our Children’s hospital last week we met a little girl who really really touched me. This child has a rare genetic mutation that causes a number of developmental delays. She is six years-old, has limited communication skills, and uses a wheelchair for mobility. After speaking with her and her mother, it struck me that one of the difficulties of having a child with an unclear diagnosis is finding “big kids” with similar challenges and strengths for Esmé to look up to…and for me to learn from.
Meeting this particular little girl permitted me think in detail, for one of the first times, about how I imagine Esmé’s nearish future. This girl was a tiny peanut, like Ez. She clearly loved meeting new people, like Ez…and being in control of her own mobility, like Ez. I watched as she shot around the lobby of the hospital in her special wheelchair, the SnapDragon, making friends along the way–including a nervous policeman who bent down, trying to understand if she was lost, until her mother waved across the lobby saying, “she’s with me, it’s ok!” Seeing this child’s independence made my heart swell…with joy…and with a new kind of hope.
So much of the time I watch children who do things that Ez might never do–or at least in ways that she might not do them. I am not being pessimistic here…the reality is that we have no idea what Ezzy’s prognosis is. And while I hold the very strong belief that Esmé will continue to surprise us and surpass expectations, there is a very real chance that my child will not walk unassisted or speak or do a number of other things that “typical kids” do. Or she might do all of those things. We have NO idea. Her doctors have NO idea. In fact, I feel certain that divine beings have NO idea what Ezzy may or may not do.
And, I say this honestly, I am ok with that. I am ok with living simultaneously with the hope and the potential “realities.”
I try not to take any of Esmé’s abilities for granted. Esmé has the most amazing capacity to make people happy–to slow them down. Her smile is contagious. Her little feet are skilled at expressing a spectacular range of emotion. She is fearless. She is an Olympic hopeful in all-terrain rolling. Ezzy is also amazingly adept at destroying the paper cover on the doctors’ tables.
These are strengths that I must nurture, as her mother. This nurturing, however, is mostly immediate…I don’t often look down the road to how I think her strengths can/will/might play out. I can’t. I don’t know how these abilities play out in the world. All the references I have are meaningless with Ez (except of course happiness)…Will she go to school? What kind of school? Will she have a job? Live on her own? Have children?
And this is a partial a blessing–as parenting can easily become a trap in which you fantasize about your three year-old’s college potential while missing out on how good they are at being a three year-old. But it is also an overwhelming blank slate. While I know that the paths people draw out in front of their children are not predictive of a particular future, they at least can form some rough outlines.
But this little girl at our Children’s hospital permitted me the space to dream a little down our path…to a publicly mobile Ezzy. An Ezzy who begins to approach the world on her own, rather than through the confines of my arms. An Ezzy who makes friends without interfacing through her mother. And this has reinforced my commitment to offering her tools for that independence: a gait trainer, a crawler, a push chair. But most importantly, it gave me hope in the form of an image to cling to, a “big girl” for Ezzy to emulate.