Missing Ava Today

Two years ago we were delighted to meet Sarah from Freshblend Media, when she took our family pictures. When they heard about Ava's diagnosis, Sarah & Joe gifted us with a family photo shoot and came back out to capture more pictures with grandparents and then at her first birthday party. We are grateful beyond words. Two months have gone by so quickly, an yet it seems like so long ago that our life changed with Ava's death. We continue to cherish all the pictures and home videos we have of our little Bean and frequently stop what we're doing to savor the morsels we have of her life with us. Each one makes her real to us again.

her sweet curls

 her chubby little feet

 her snuggles

and those sweet kissable cheeks

Sarah graciously created this slideshow for Ava's memorial service and we watch it many times a week.



We miss you terribly Ava Bean.

A Little Life

Our nephew, Jonas (pronounced "YOnas") Kallenberger was born today, after only 27 weeks and two days--such a short time--with his mama. He weighs just 2 1/2 pounds, but appears to be strong and is so far doing well. It is a painful déjà vu for us, and we are heartbroken that Matt's sister and family have to walk this path. We ask for your prayers for Jonas, healing for Julia, and for God's unfailing mercy and sustaining grace to carry them all.

One new day at a time

The sun comes up
It's a new day dawning
It's time to sing your song again
Whatever may pass and whatever lies before me
Let me be singing when the evening comes

Bless the lord oh my soul
Oh my soul
Worship his holy name
Sing like never before
Oh my soul
I worship your holy name

-10,000 Reasons, by Matt Redman

Life in a crisis is exhausting, but adrenaline, caffeine and the miraculous grace of God can carry a person through rough waters for a long time.

Then the crisis is suddenly over. And life moves forward. Ready or not.

Normal comes pressing in, and then the real work starts.

Since Ava's death, needs that had been on the back burner have emerged to be dealt with and this past week I've felt the weight of many mundane, normal things that need attention. The house needs work, Matt's work needs work and our dear Grandma Harms is moving to St. Louis in a few weeks. There's a lot of life happening.

Elizabeth needs structure to her days and because of her learning disabilities, needs to be directly taught most things that typical 6 year-olds "pick up" or intuit as they go through their day. Whether due to her oral motor weakness or sensory issues, she has very selective eating preferences (read: limited diet) and yet needs lots of calories to help her grow because we're giving her growth hormone shots every night.  Meals are often a tearful battle and I don't know how to get out of the loop and find middle ground between helping her learn to eat a diverse diet of food that is good for her, and letting her eat cheese, yogurt and milk for every meal.

Ruby is the most emotionally intuitive of the bunch and needs TLC to help her "come down" from her fear about us leaving her without warning.

Last night, Hannah fell down an entire flight of stairs. For the second time. Where are her parents??? We joke that Hannah Mae pretty much raised herself last year and, well, she was pretty lenient on herself! So now she needs some clear boundaries again, and that takes time and focus and commitment from tired parents.

Normal is hard. It's good and sweet, but it's hard to do day after day through the fog of grief and loss, even when those feelings aren't always at the forefront.

So we walk forward through the fog, and still manage to enjoy wonderful family times, doing things with the girls that have been pushed aside first because of Elizabeth's fragile health, and then Ava's. On Sunday, we took them to their first Cardinals Game.

Three years ago, Elizabeth had a full blown anxiety attack when the mascot from Red Robin approached our table. The Symphony was a complete disaster. In contrast, at the game, she was so courageous while Fredbird (the Cardinals mascot) danced a few yards away. Her progress is a gift of grace! The big girls have enjoyed their first day-camp experience, and tonight we made it through one hour of a live musical production of Aladdin at the MUNY with our sweet friend.
 

Thank you to all the friends who've gifted us with tickets and invited us to come be part of your life. We feel so blessed. Additionally, Elizabeth's Kindergarten teacher delivered a gift basket full of gift cards and tickets to various St. Louis activities, all from generous staff and families at St. Louis Charter School. Incredible!

 (Getting artsy at Baked Goods Pottery)

(Imaginations run wild at the Magic House)

So for the first time since having kids, we're spending more time doing fun activities with them than in the hospital. And it really is beginning to feel like a new day is dawning. And He is guiding us forward.

Every day, we breathe deep of God's grace which is sufficient and available in abundance and His faithfulness which enables our trust in His plan. We remind ourselves that God chose Elizabeth, Ruby and Hannah Mae for our family, just as surely as He chose Ava. He is giving us the wisdom we need to parent them well. He has good plans for their lives, and ours.

We rehearse what we know is true both in the drama and intensity of the NICU and in the normal mundane days at home.

In the middle of fun family times, and when we cry at target or feel the pang of grief without warning.

At both the birth and the memorial.

Always.

Lord, you alone are my portion and my cup;
    you make my lot secure.
The boundary lines have fallen for me in pleasant places;
    surely I have a delightful inheritance.

I will praise the Lord, who counsels me;
    even at night my heart instructs me.

I keep my eyes always on the Lord.

  

With him at my right hand, I will not be shaken. 

Therefore my heart is glad and my tongue rejoices;
    my body also will rest secure,

because you will not abandon me to the realm of the dead,
    nor will you let your faithful one see decay.

You make known to me the path of life;
    you will fill me with joy in your presence,
    with eternal pleasures at your right hand.

Psalm 16:5-11

Happy 4th of July!

...and Happy Birthday America!