26.2

It has been one week since we confirmed Ava's diagnosis and then increased her dose of steroids to try get a little more awake time with her each day.  We haven't seen the significant improvement we'd hoped for, but her breathing has been stable and she seems comfortable.  Because of that, we've been able to take advantage of Elizabeth's Spring Break to savor some togetherness.

We've managed to fit in some wonderful times together at the zoo,

 

feeding the ducks in Tower Grove Park,

 

 

 

feeding the fish at the Botanical Gardens,

 

 

 

...and picking out a new stash of books from the library. On the heels of all that activity, we're all completely worn out.  Last night it took an hour for me to make 3 tuna fish sandwiches for the girls! Clearly we're not firing on all cylinders.

This morning, a friend gave me a helpful picture to describe this season of our lives- we're competing in a triathlon (someone got picky about the term so we compromised by grouping events to keep from having to call it a "dexathalon"!).  We finished the swim leg (months of bed-rest and then 3 months in NICU).  The cycling leg is over now too (hydrocephalus, shunt failure requiring surgery and the hard-to-treat epilepsy that kept us in the hospital most of the fall and winter).  Now we're running the marathon, which started when Matt's dad passed away suddenly and we learned of Ava's genetic diagnosis and its prognosis...and there are still many miles yet to be run.

 

Each leg of the race is different, requiring different muscles, new energy, and new skills.  There's also a painful transition between each leg, when our bodies and minds are switching gears, shedding the experiences of the previous moment, and embracing the tough road ahead.

Right now we mostly feel awkward.

 

We're searching for our rhythm and struggling to pace ourselves because, in contrast to the 26.2 miles of a marathon, we have no idea how long this leg of the race will be.  And honestly, we're not even exactly sure which course the race is taking.  Is it the low lying flat course of a complete healing? Or is it the grueling mountain run with peaks and valleys that will end with Ava's home-going?

We're running.  There's no turning back.

And in many ways we're running blind. Except that we have a Guide who is daily ahead of us, calling us to follow Him.

Without a map of the course, this season is full of tension...desires and needs, hopes and realities each pulling us in a different direction. And while we ARE experiencing the grace of God, moment by moment, some moments feel more grace-filled than others. Some moments look like quality time with my girls because Miss M is folding laundry and a blessed soul has signed up to bring dinner. Other moments look like tears on the way to the grocery store because I have to get away because savoring each and every second of each and every day is...exhausting.

My brain simply can't hold onto the reality that my baby is dying and I have the choice to spend my time doing anything I want...so how can I put her down? or walk away? or take a break when I don't know how many moments I'll have?

 

How do we grieve Ava's condition which has robbed her of development and the ability to interact with us, and still celebrate her life?

How do we live fully in the moment, enjoying every day and still give ourselves permission to take the space we need, let off steam, and even distract ourselves without feeling guilty?

How do we work, parent, and live, so close to the veil that separates life end death? How do we pray with every breath for a miracle, and still release Ava into the hands of the one who formed her, for His will to be done in her life?

And how do we teach our daughters about the joys and delights of heaven, where their beloved Grandpa and precious cousins are waiting, and then tell them we're not ready to let any of them go there?

We can't answer these questions. But God hasn't left us alone with them. Daily we need His grace to hang on in the in-between. He has promised to send us a Helper. So we trust He is with us. And when we feel like we might split in two, He is here. A friend makes space to listen and encourage. My sister cares for my heart with her words and her prayers. A friend hauls Matt away for a mid-day break. A text, a card, a comment, an email, and a voice-mail bring encouragement and solidarity. Cookies from sweet neighbors. Packages from Angels to bless the girls. A friend to sit with Ava so we can share a meal with our big girls with a little less distraction. He is using you to care for us. 

And while we often feel we're stumbling along, we know He is keeping our feet on the path and making the path before us straight.

One mile at a time.

I lift up my eyes to the mountains—
  where does my help come from?  

 My help comes from the LORD,
   the Maker of heaven and earth.

 He will not let your foot slip—
   he who watches over you will not slumber; 
indeed, he who watches over Israel
   will neither slumber nor sleep.
 The LORD watches over you—
   the LORD is your shade at your right hand;
the sun will not harm you by day,
   nor the moon by night. 
 The LORD will keep you from all harm—
   he will watch over your life;
the LORD will watch over your coming and going
   both now and forevermore. 
Psalm 121