Dear Arabella (June 10, 2016)

Dear Arabella,

My sweet, sweet girl. Yesterday we celebrated TEN months of breathing, miraculous life. So many seconds, minutes, hours, and days beyond what we expected to have. Your mama still gets choked up when she thinks about the privilege and the grace of living daily life with you. You, my dear, bring so much joy to our days. You have the most infectious joy about you that is constantly drawing others in. It’s impossible not to laugh when you laugh. You’ve developed quite the repertoire of facial expressions, and seem to know just the one to pull out of your hat to entertain your adoring onlookers. You have your own version of “hi” and “bye” that is accompanied by a rather endearing wave.

You’ve continued to develop your palette this month, and are now eating dairy and soy with no problems. Mama wouldn’t let your sister have any sweets until her first birthday, but as a second child such stringent restrictions have not been applied. This month you’ve tasted donuts, and brownies, and ice cream, and key lime pie for the first time. We’ve yet to really find a food that you don’t like, as long as you can feed it to yourself. Most nights, you just end up eating whatever we’re having for dinner cut up into little pieces.

In the past week, your motor skills have been taking off. Mommy has been doubting that you would crawl before you walk, but you must have heard me say that and determined once again that this was a challenge you must conquer. You’re starting to get up on your knees and make a little forward progress. Mommy can no longer trust that you’ll stay put where she leaves you. And today, for the first time, you managed to get from laying down into a sitting position. This was a bit of a “fluke,” but something tells me you’ll have this mastered as well in no time.

Mommy and Daddy have been learning a bit more about your syndrome in the past week. We finally managed to find the right group on Facebook (isn’t modern technology amazing? perhaps by the time you read this, though, you may have to ask what Facebook is) and now are in touch with the Ellis Van Creveld community – small though it may be. Turns out it is thought that there are at most a couple hundred people with your syndrome. Worldwide. My girl, you are truly more than one in a million.

There have been all sorts of emotions as we learn more, my dear. First of all, we are once again amazed at what the Lord has done in your life. Most EVC babies seem to need a bit of assistance at first, and many spend their first months (or a lot of the first year) in the hospital. Many need some sort of oxygen assist in their first year. And so we still shake our head in wonder that you were in your mama’s arms, instead of a NICU, when you were mere minutes old.

We have also been reminded, though, of challenges that lie ahead. Most of them were already known to us, but there are a few added dimensions we weren’t previously aware of. This is where mommy tends to get ahead of herself. It’s so easy for me to rush ahead in my mind to the years to come – to try to figure out how exactly we will manage certain things. How we will disciple you through it all. How you will handle specific challenges. And the more I get caught up in the details and the unknowns and the potentials, the quicker my heart races.

It’s probably no accident that in this week of learning, I happened to be reading to your sister Jesus’ teaching about the sparrows and the lilies. We laughed at the silliness of a sparrow pushing a grocery cart in the children’s bible – sparrows don’t need to go grocery shopping! And mommy sensed this lesson was more for her than for her daughter.

And so, my dear, your life continues to be a beautiful altar, where mama lays down her fears and her hopes and her expectations. We release all of our tomorrows, which has the incredible side effect of allowing us to fully delight in our todays.

And my goodness, there sure is a lot to delight in today.

You are so loved,
Mommy