Hope

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The other day as we drove back from New Brunswick I found myself meditating on the idea of hope. I kept thinking about how hope can be understood as a naïve expectation that thing will just be fine, even in denial of the facts.

I think this is a misunderstanding of what hope is.

In my experience, hope takes work. It is the opposite of naïveté…it is an acceptance of the facts and a choice to be hopeful anyway. And sometimes it means making your hope accommodate reality. I hope Esmé will walk. I hope Esmé will talk. I hope Esmé will eat by mouth…and we constantly work on ways to assure that these remain options for her. But doing the really hard work toward continuing to have these options means acknowledging and accepting that, in fact, someday they may also not be options.

Otherwise, why would we be working on them so hard?

Esmé is not a child who will just learn to do these things on her own. It is not an option to ignore the challenges she faces in walking, talking, or eating (or anything else), because that would mean giving up hope on her potential to face down these challenges.

So, when people ask me if Esmé will do something or not and I say “She may not, but I don’t know” that is my hope speaking…If I said “Of course” it would be a lie, and it might excuse giving in when things got harder…or pushing her too hard and loosing ground.

I understand that Esmé will let us know what she is ready for and when, if we are clued into her subtle signals…if we listen to her.

I truly believe that this approach to parenting and caring for Esmé has secured for her a level of development, health, and happiness that was seemingly impossible a year or two ago. But, this was done incrementally, the result of hard work and trade-offs that probably look like very conservative choices from the outside…preventative choices to not push her when she is overwhelmed…and to recognize when that is.

This is difficult territory for other people to understand, because it is very hard to prove the results of preventative care, to see that every decision we make for Esmé is made from a place of hope…that if we don’t push to hard, if we are patient, she will continue to blossom in her own way.

Our trip to New Brunswick last week was a calculated risk. She spent hours in the car, was exposed to a wide range of new sensory experiences, traveled across an international border from doctors that know her case. We weighed each of these risks and felt that, with the proper preparation, the benefits finally out-weighed the risks. And we were right, the benefits of this trip–meeting family and friends, experiencing new places, being on an adventure with her family–did make up for the challenges we faced: poor sleep, frustration, fatigue, fevers, etc.

However, the whole trip was, in a sense, a giant therapy session for her because she was learning to face new experiences like the smell of fresh seafood and salt, the sound of her parents speaking in French, navigating a cottage that was not Esmé-proofed. And this is why we made calculated choices to monitor her closely, to not challenge her in too many ways at once, to not attempt to feed her by mouth or press her learning in the ways we do at home…and to not do all of the things we planned to do.

But of course, there is hope in that too…hope that maybe we will get to take her back. Maybe next time we will see Prince Edward Island. Maybe next time she’ll taste lobster. Maybe next time she’ll join in the noise parade. Maybe next time we can enjoy the beach…sand between her toes.

I hope. I hope.

I hope.