Our Story: God's Faithfulness

Last spring, we were approached by our church, The Journey, with the idea of creating a video about God's faithfulness to our family throughout Ava's birth and diagnosis. Though she passed away before the filming could take place, we felt like God's story was so important that we went ahead with the interview.

Five days after Ava died we had a film crew in our home and though they were extraordinarily gracious, after a 10-hour day of filming, Matt and I wondered if we could have possibly said anything coherent. We were totally spent. Honestly, it made it easier to leave the whole project in God's hands, knowing if He wanted to make something of it, that would be HIS job, not ours. 

This weekend, they showed the video as part of the sermon, and we were extremely humbled and grateful to see our small part in God's great story. He is so faithful.

If you'd like to, you can view the 12 minute video here:  

In so many ways, this story is bigger than us. God sustained us by his grace, He brought countless friends and strangers into our lives to providentially care for us, and in the end, we are so thankful for the prayers and support from so many of you, which made this part of our story possible. 

Humbly and with so much love, 

Matt and Sara

Our own time

School officially started two weeks ago.  Sweet Elizabeth spiked a fever during breakfast. No school for her, no first day pictures for me.  Two days and another prescription for antibiotics later, we finally have a first grader!

Being out of sync with the rest of the world once again stirred my heart, and I was reminded that seven years ago, God gave Matt and me a most precious gift: He began the process of freeing us.

We were on a fast and beautiful track. Happily married, medical school success, church and community we loved, and a baby on the way. Everything about our future seemed full of hope. At the time, Elizabeth's prenatal diagnosis with Turner Syndrome seemed like a devastating blow to our hopes and dreams. We wrestled with all the questions that flooded our broken hearts. We stumbled blindly through twists and turns on our faith journey, trying to make sense of our new life 

...and the change in our destination, from Italy to Holland.

And then, the gift: during that season, God took us out of the race. Not His race, but THE race. To be the best. Do the most. Raise the cutest, most accomplished. I remember naively saying to a friend, "How can I be the perfect mom, when all my parenting books...don't apply??"

What felt at first like a trap, was truly freedom.

I am a people pleaser. I prize approval. I want to fit in.

God knows my frame. And He gently lead me to still waters, toward LIFE.

Through Elizabeth's difficult and beautiful life, we have been set on a road less traveled.  And one day at a time, I'm slowly getting my bearings.

Elizabeth will develop in her own time. She is on a unique journey and is not at all concerned if she goes along with the crowd. All the childhood moments I could get worked up about, are instead held loosely. She has missed weeks and weeks of school, class pictures, birthday celebrations, family reunions and holidays. Her own birthday has been celebrated in the hospital twice. We've cancelled swim lessons and therapies, changed schools, walked out of the symphony and the outdoor theatre, skipped more activities, parties and normal childhood events then I can count. I've had to become comfortable saying, "That doesn't work for her. For us." and "I'm sorry to cancel at the last minute, Elizabeth is sick."

Every time I start to try to make our family fit in the matrix, to do what everyone else is doing--gets to do--God gently pries open my hands and reminds me that He is our inheritance.   And while it's especially true for our special daughter, God continues to whisper the truth of it for each of us.

We're not being called to look like other families.

The Author is writing our story, full of beauty and joy, laughter and tears, full precious friends and the hard work of learning and changing and growing up, all of us.

Blessings abound

Tonight, the girls finished one of our favorite activities of the summer. I shamelessly stole the idea from my dear friend Adrienne when we visited Memphis and it was a hit with our crew. Every time I observed them being a blessing: being kind, serving each other, making an especially good choice, loving each other and others well...I wrote it down on a link and they traced it or copied it (Horray for an extra OT activity for Elizabeth!) and attached it to the chain. Now that they've reached their goal of spanning the dining room, we'll have an ice cream party!

This turned out to be super motivation for me to look for all the good choices they make throughout the day, it gave them some motivation to love each other well and continues to give us language for what being a good friend, kind sister and civil member of society looks like!

Our sweet girls are such a blessing.

Before and After

Last week was a challenge. Nothing extreme, but intense nonetheless.

A cranky toddler with a fixation on tormenting her sisters. A sick kiddo who couldn't move quickly to do anything. General boredom and discontentment run amok in the ranks. More 100 degree days looming ahead, trapping us indoors yet again. 

I couldn't find my stride. 

One morning, after my intended prayer time got sabatoged by an early riser, I found myself --at 9:30 am--wishing I was a smoker, because I could really use a cigarette break!

And suddenly, like a rising tide, I missed Ava. I missed her calming presence. I missed the clarity she gave me about what was important in life. I missed the direction and focus she gave to each day. 

I missed the space when so many things didn't really matter. 

Matching clothes, clean floors, balanced meals, order and direction for our days...for many, many months they were impossibilities, so I let them go. Some of you saw it up close and marveled at how peaceful life was. And so often, by the grace of God, it was.

But that was it: There was a grace.  

God's grace enabled me to do what I'd never been able to do before. The intensity of Ava's journey required that I let go of a lot of things, and pursue only that which was essential.  Like jumping into a river to rescue a drowning child, it was a response so visceral and all consuming.  With life hanging in the balance, priorities were suddenly in order and the lawn getting mowed or the beds getting made moved appropriately down the list. 

Yes, what we went through with Ava was without question the hardest thing we've ever done.  But surrounded by prayer and practical support, eating meals prepared by friends, knowing our big girls were lovingly cared for,  it was also, in some ways, easy. 

And even when the sleep was fleeting, and the home/hospital schedule was taxing, and we weren't sure we could do another day, we had the gift of knowing our time was short to keep us from projecting out the hardships of today into the months and years to come. For the most part, we were able to savor each moment, even when it required sacrifice, knowing those moments were numbered.

Ava never had a tantrum, she never did something to make me feel angry at her, and so I never felt the guilt of overreacting. I never had the chance to feel resentment or frustration over her behavior or how my life had changed against my will.  The unique circumstances of Ava's life enabled us to be the parents we wanted to be, and now, months later, to have very few regrets about how we lived those 365 days. I will be thankful for that for the rest of my life. 

But then the adrenaline rush ended. The prayer chain emails stopped flying and life returned to a different version of normal. 

And the new reality is: even on a good day--and there are many--parenting well is a different kind of hard.

Without the crisis to inform our days, all the priorities that have been held at bay come flooding back. Now at least, I perceive that I can control some of those things and making my kids eat vegetables, developing a working schedule for our days, potty training, meal planning, grocery shopping, Elizabeth's therapies, paying bills, and keeping our home in order fill up my days again.  

Now, with all the extra space in our lives, letting go of the non-essentials for the well-being of everyone  is a choice I have to make a dozen times every day. 

And I realize, just maintaining my joy, patience and grace is a feat. Speaking with loving words when someone is being irrational and out of control is a challenge! Prioritizing people over tasks--which felt so easy three months ago--is again difficult. 

But that is the mom I want to be.  

So the honest truth is, my "before" and "after" lives both require heaps of grace for myself and my little people.  Every day it still requires speaking the truth to myself moment by moment. Believing what is true about God. Trusting the path He's chosen for me and fixing my eyes on the One who defines my success, knows my frame, and even still gently leads me forward.