Yesterday I read a post written by a fellow contributor to The Mighty, Laurie Arnold, “When My Mom Asks ‘Why, God?’ About My Child With Special Needs.” The post just floored me. Please go to read the original post on her blog, I’m Julia’s Mom, or The Mighty, but the crux of it has to do with the notion that a person might ask God “What did I do to deserve this?” with respect to their child with a disability, not because they see this child as a burden, but rather as a blessing.
When I read it yesterday a feeling of calm settled over me…and I thought: Yes, this. This is the thing that is so hard to explain.
Because I know that many people look at us and see us as encumbered. I know that for some people, even if they think my daughter is beautiful or sweet or adorable, they may also think that she is a burden. I see in others, more frequently than I’d have expected, the “but for the grace of God go I” look.
Esmé is, undeniably, a child who requires a lot of attention–and who will likely continue to require a lot of attention for the remainder of her life. Having Esmé means that we don’t do a lot of the things we dreamed of doing at this stage of our lives. Being Esmé’s mom has meant experiencing a lot of terrifying and painful things. Caring for Esmé is certainly so very different than what I expected, than what I see other parents doing, that I feel like I’ve landed in the Twilight Zone when I’m around neuro-typical children.
And I’ll just say it…it is hard. Like not a couple of years of poor sleep and obstinate child hard (which is hard). It isn’t a trip to the hospital with a broken leg hard. Or what school district hard. But it is existentially hard. Hard like regularly wondering whether you will outlive your child hard. Hard like looking down the barrel of years and years and years of doctors visits, life-threatening illnesses, micromanaging caregivers, not having your child out of your reach hard. Hard like regularly watching your child in serious pain and not knowing if it will ever end hard.
But here is the thing that is difficult to explain: I would not change it.
I would not change being Esmé’s mom.
I am thankful every day for the gift of being entrusted with this child.
And while it might be easy to dismiss this assertion: Well, of course, she loves her daughter…of course she wouldn’t change it. Because Esmé is here and she loves her.
That is true. I love my daughter. I would think she was fantastic no matter who she was. Of course.
But what I am talking about here is deeper than that.
Being Esmé’s mom has tested (and continues to test) every aspect of my personality, my endurance, my compassion, my self. But the fact that it is difficult, that isn’t about Esmé being somehow “imperfect.” It has nothing to do with that.
And it has everything to do with my own imperfections.
It is difficult to be Esmé’s mother not because she is a burden, but because of the places where I am weak, where I need work, where I need to look closer.
Because of Esmé I am forced to confront so many things I do not like about myself: my lack of faith, my need for control, my jealousy, my inability to be in the moment, my self-centeredness, my hard edges, my unhealthy patterns and relationships (…there’s more, but I’ll let that suffice for now). And because of Esmé I have learned to work on some of these character flaws, to hone others into tools to better help my daughter (and myself)…and to acknowledge the rest of them, apologize when they surface, and forgive myself for being imperfect.
Because of Esmé I have begun to measure my life with a different metric–one that is not about the traditional achievements I spent a good part of my life aiming for, but by kindness, compassion, happiness, fun, and honesty…by how many times I’ve made her laugh, by how patient I can be through her frustrated crying, by how many parents on this journey with me I can connect with, by how times I speak up for others. By how much I see my daughter just as she is without comparisons to her peers. By how still I can be with her. By how many times I put my words out in the world knowing they are my truth in that moment.
I’m not that good at any of it yet. But I am trying. Every day I am practicing, finding the balance. I watch my daughter stand herself up against things time and time again, and falling hard, again and again. Rarely making so much as a peep before dragging her small uncooperative body up again. Again. Again.
Just that way, I learn a bit more each day.
It is hard–but so many of the things worth doing in this life are hard. It is why people climb impossibly high mountains: To test their limits, to see the world differently, not just from the top, but from the bottom and all along the way. Why else would there be mountains? The mountain climber is not encumbered by the climb–she is encumbered by her own humanity, by the limits of her lungs, and her muscles, and her brain.
This is one of the blessings of human variety–people who are different, who break the mould, they challenge us. How a person responds to and views human difference–and here I am not just talking about ability, but all manner of difference–says nothing about the fact of difference, and everything about their own humanity.
Recently I had a comment on a post (“Esmé Can Read“) that was from an undoubtedly kind individual who questioned, why God makes “mistakes” and for what purpose. I did not reply to the comment because I wasn’t certain how to do so without seeming disagreeable. But I feel compelled to now, here. I don’t ascribe to a particular religion–religion isn’t something I fully understand, honestly. But I do have faith that there is an order to some things in this world. I think that challenges and variety are inherent to life–and that comfort is not. And I do know that my daughter’s challenges–her genetic changes, her wordlessness, her physical limitations–these are not mistakes. They are obstacles–for her, for me, for everyone who loves her…and, perhaps most of all, for society, for how we view and respond to these differences.
And this is no mistake. It is a blessing. It is an opportunity.
A gift. Esmé is a gift.