a state of grace

"If something or someone doesn't work, it's in a state of grace, progress, and evolution.  It will attract love and empathy. If it does work, it has merely completed it's job and is probably dead."  nigel andrews (taken from the book far from the tree)

i'm reading the book far from the tree by andrew solomon. 

i am only at the beginning of the book. i've just finished chapter 1 (all 50 pages of it), but i get it.  in this first chapter, he writes about horizontal identities, identities that aren't inherited or shared with the parents, and the challenge this poses for parents who so desire to have their children mirror themselves. the challenge is born out of a desire to identify deeply with our children, it's not bad, but it can be bad, and either way, it's hard. 

i am the parent of a child with a difference. with a horizontal identity and even though i'm only 50 pages in, i get it. i get all the intensity and the depth and the pain and the beautiful agony. i get the joy and the bittersweet and the changes that happen inside you when you begin to see over and over what really matters and you begin to let go of what doesn't.  but change is hard and growing hurts and like all things we learn, it takes repetition and time and patience. 

i love the idea that when someone or something is broken, it's in a state of grace.  i love the hope that is inherent in progress and process and evolution.  because if there is one thing i've learned in my 13 years with zoe, it's that i'm much more broken than she.  if there is one thing i've learned it's thank God for the grace.

i remember when zoe was a baby. i remember when i first knew there was something different.  when i first noticed her short neck and her slightly curved spine.  everyone said it was nothing, that her back only looked curved because she was wiggling.  but mothers know in a way that maybe only the person who grew you can know.  and when she couldn't lift up her head at 3 months, others agreed we should have it checked.

when we first had "confirmation" of her difference- her malformed scapula and her non-segmented cervical vertebrae- i was so sad and so scared.  i was in medical school and i was studying all about differences and malformations and abnormalities.  i went right to the books to research what were the possible problems with my baby.  there were a few possibilities- the "worst" being klippel-feil syndrome.  no one wants a "syndrome" and no one wants a kid with a "syndrome"-- it just sounds bad.  klippel-feil syndrome is rare and possibly affects many organs during development- the spine, the kidneys, the heart, to name a few.  i remember thinking- please God don't let her have this, i can handle anything but this. (i would come to find out again and again, as we all eventually do, that we can handle way more than we ever dreamed we could.  we are given the grace to handle the this's of our lives).  i remember envisioning a very deformed child, a child who would stand out for being exceptional, but not in a good way.  i thought about how different our lives would be.  i thought about how different her life would be from what mine had been, and i didn't want that for her. 

i was desperate to look into our future, into her future- what would befall us? where was our community as the one we were in, didn't always get us.  when zoe was one year old, i had decided to take a year off and work with her and be with her, and delay my residency.  we were in little baby class at gymboree for moms and babies.  every week we'd go around in a circle and introduce ourselves and our beautiful babies and basically brag about what new and exciting milestone they'd reached since the week before.  when we started zoe could sit up alone, and when our class ended about 3 months later, zoe could still sit up, but that was it.  meanwhile all of the other babies ages 6-12 months, were learning to roll over, and crawl and walk and maybe even juggle.  they might as well have been juggling, because all those normal baby things were far off for zoe.  i remember feeling sad and different and awkward and even.....ashamed.  i remember thinking that this was the beginning of the rest of our lives. 

and in many ways i was right.  it was my first experience of being in a group that i didn't mean to sign up for- a group of people who are blessed with raising different children, a group who are thrown into colder and rougher seas; who must climb higher and steeper mountains; who will trip and fall over and over again, and while we may sometimes feel like we are drowning, that we'll never reach the top, that we might not get back up again- man can we swim! and heal, and hope and wow! how we've learned to enjoy the view, even the view from the side of the mountain, peering out from a cave we've crawled into to avoid a thunderstorm (because loud noises are scarey). 

i didn't know it then, but i was beginning to see myself differently.  i was beginning to see that all of us are broken, that all of us are in a state of grace.  i began to see how misaligned my views and expectations were- that a crooked view of normal is much worse than a crooked back. an elevated ideal of perfect children is a much greater burden than an elevated shoulder. delayed connection with your different child is much more dangerous than delayed developmental milestones. 

as the years went by, and we added more doctors and therapists and appointments, and diagnoses, i began to laugh at what i'd initially feared. scoliosis and glasses proved to be much less challenging then the things you couldn't see.  the really hard part was understanding that she has a different way of perceiving, processing and interacting with the world around her. and once i began to grasp that, i had to accept it. and once i'd accepted it, i had to learn to love it. i had to make a choice to let go of some long history of who i'd thought my child would be, and throw my arms around the one i was given.  i had to choose whether or not to acknowledge the difference or embrace it.  and over the years,  i would be given the grace to not just accept her differences, but to say 'thank you for the gift of zoe- for the gift of all that means- for the gift of her differences, and our different lives.  thank you for the pain we've gone through- because it is part of this.  thank you for the loss of normal- because this is our differently beautiful life.  thank you for the tears and the aches because this is our story- this is what was meant to be'.

it's not easy.  it's not now 'packaged'.  it's not over.  i am not standing on the top of the mountain. 

but.

i am remembering that i live in a state of grace.  for that, i am thankful, because it is enough.

"i write now what 15 years past i would still not have thought possible to write: that if today i were given the choice to accept the experience, with everything that it entails, or to refuse the bitter largesse, i would have to stretch out my hands- because out of it has come, for all of us, an unimaginable life. and i will not change the last word of the story. it is still love."
-  Clara Claiborne Park (mom of daughter with autism)