Blog Archive

Friday, December 28, 2012

Pursuing the Sunrise

Thanksgiving weekend marked six months since Ava's death. Far from feeling grateful, I felt overcome. For weeks I'd sensed I was slowly slipping toward despair.

"I dreamed...I was frantically running west, trying desperately to catch [the setting sun] but I was loosing the race...I glanced over my shoulder to the east. I saw a vast darkness closing in on me".*

Round moons, and all the tulips in Holland couldn't change the fact that this life of pain and sorrow was threatening to swallow me.  From where I sat, in the throws of depression, the truths I'd believed, rehearsed, written and proclaimed couldn't gain traction.

In desperation, I sent a text.

"...I think it's about time..."

A friend responded with the number for her grief counselor, and I sat in a puddle of tears. I made an appointment, and called my doctor.

This life we have lived over the past seven and a half years has been so filled with emergencies and coping and necessary compartmentalizing that I have simply been unable to thoroughly grieve all the losses and disappointments and sorrows. And now I don't have a choice. My body is telling me that my heart needs some attention.  Some space to grieve, to be angry, disappointed and undone...and to let God meet me there.

"...the quickest way for anyone to reach the sun and the light of day is not to run west, chasing after the setting sun, but to head east, plunging into the darkness until one comes to the sunrise."*

I am choosing to walk into the darkness of grief and to open myself to the sorrow.  The medication I'm taking is helping my brain to feel safe to process and has lifted the veil of despair enough for me to remember what I want, and what I know is true.  I am spending time with a grief counselor regularly and am grateful for this sacred place.

It's time to take care of myself. For Ava, for my family, and for me.


*Jerry Sittser, A Grace Disguised

Monday, December 17, 2012

Loved.

This weekend, while I sat with Elizabeth in the hospital, three friends came one after the other with hugs, encouragement, prayers, Q'doba and Starbucks. And while my heart was being cared for, a group of folks from our church descended on our home to clean, organize, sort, fix, entertain our girls and bless our family. Now, every time I notice an area that was touched, I thank God for his Body, and that He gave us such a beautiful community. We feel so loved.

Sunday, December 16, 2012

We're home!

With two days of negative blood cultures under her belt, Elizabeth was discharged this afternoon on oral antibiotics! Thank you all for your prayers!

Friday, December 14, 2012

Our Little Pandemic

We'd appreciate your prayers for Eliza-bug. After a high fever with no clear source, we got bloodwork done yesterday and this morning she's being admitted for bacteremia again. This time it's a bug that won't respond to her oral medications, so we'll be in the hospital for IV treatment. On top of her blood bacteria, she has TWO viruses...including croup! She feels pretty miserable, but is still her cheerful self. What a trooper!

Wednesday, November 7, 2012

The Moon is Round

When it is dark and only a sliver of the moon is showing, what do you know?

You know that, though you cannot see it, the moon is round.

In those moments, and seasons when we can only see a sliver of God’s purposes and intentions, what are we left with?

We are left to believe what we know to be true, though we cannot see and cannot understand.

Our pastor reminded us of this during Ava's memorials service and while it was comforting at the time, in the 5 months since her death, it has become a multiplied blessing. It is now a precious monthly reminder of our dear girl.

Friends call, email and text to tell us...

The moon is round!

My heart is flooded with memories when I look up and see, and to know that others see it too...and remember Ava.


 ...and remember God.

So much of what I write here, is a gift to myself. Just me.

It's a place to process. A place to mark down where I was and where God was and what He was doing. It has become a sacred place to remember what I know is true, though the skies are dark and my memory fades.

The inspirational and life transforming truths that God has given me are just that, a gift for me as much as for anyone else. So much so, that in the days and weeks since my last post, I have visited this space often to read my own writing, and remember and rehearse what I believe.

We are doing well and one day at a time, God turns shifting sand into bedrock.

The moon is round.

God is who He says He is. 

I believe Him.



Thank you Pastor Jeremy for this story and the comforting words you shared at Ava's Memorial. We're forever grateful. And thank you to everyone who continues to reach out to us to share in our grief, to remember Ava with joy, to express your condolences and remind us that she--and we--are not forgotten. We're so blessed by your continued companionship.

Tuesday, September 25, 2012

I don't know what to write. Every day I'm on empty. I pour out what I have, and He fills, and yet every day I'm here again.

Moments of joy, moments of quiet. Many moments of fog and silent prayers through weary lips. Lord please...carry me. 

Leaves turn on the trees and I wait for a turning in me. To feel different, to break through into a new stage.

But the missing and the ache and the sadness sits over me like the Central Valley fog I grew up with. And the margins fill up and for days and weeks I feel the lump there, growing in my throat. My need to be with her, love her and miss her.

In a rare moment of quiet today, I re-read the journal entry below from December 6, 2010.  God brought me into a place of rest, four days before finding out I was pregnant with Ava. Today, I revisit the places where God has spoken and I have heard. Places where He has loved me with life-giving Truth.

************

What if I believed this is how it is supposed to be?

What life this side of heaven is supposed to look like...chaotic, disheveled, small successes, frequent interruptions...this messy version of beautiful?

To believe that You created me for this, You're shaping me in this, that You're drawing me through this toward You, would be a kiss of rest and peace and contentment.  I long for that. On one hand, to stop navel gazing to see what I am doing wrong that I can fix so life will get smoother. On the other hand, to cease constantly seeking, searching for what someone else has--a trick, a fix, a tool, a method--that I'm missing, that will make my life "work". And why do I believe it's not working?? Because it's not easy. It doesn't look like the blogs I read and photos I pin. It's not perfect. But isn't that what grace is for?

I'm not perfect. My kids aren't perfect. My house isn't perfect. My life is messy. And the shame, the condemnation, the stress that the goal of perfect produces, is unbelievably heavy.

God, can I give you that burden? The burden of rightness, perfection, and ideal?

The one you died for, because of what I couldn't be and what I couldn't do? And could I receive the truth that you're not waiting for me to get it right?

Oh Lord, I just need heaps and heaps of grace. For days that go as planned, and ones that get lost in the grind. To release my ideals and plans to you and know you are lovingly working and weaving in everything to make me more like you.  Every bit of this is Grace.

For we do not have a High Priest who is unable to sympathize with us in our weaknesses, but we have one who has been tempted in every way, just as we are--yet without sin.  Let us then approach the throne of grace with confidence so that we may receive mercy and find grace to help us in our time of need.  ~Hebrews 4:15-16

Tuesday, August 28, 2012

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

Saturday, August 25, 2012

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.


Sunday, August 12, 2012

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.

Saturday, August 4, 2012

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. 

Monday, July 23, 2012

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.

Tuesday, July 17, 2012

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.

Wednesday, July 11, 2012

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!



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

Wednesday, July 4, 2012

Thursday, June 28, 2012

Ava's Service: Gratitude and Remembrances

I told Matt after the fact, that the day of Ava's service felt more like a wedding than a memorial. While I was dreading the act of saying goodbye to her in such a public way, I felt such gratitude for Ava's life with us.


I felt such longing mixed with joy over her departure to a much better place.


I was proud of how her life had touched so many and grateful beyond words for each person who was able to join us to celebrate her.


And I felt so thankful for the ability to memorialize her life in a way that fulfilled my hearts desire. I imagine I will feel similar feelings on the day each of my daughters, joins her life with another in marriage. It was truly painfully sweet.





Both Matt and I were able to speak, and it was a great honor and blessing to stand before our family and friends and share how Ava had lived and in doing so, changed us forever. We, perhaps more than anyone, are different people today than we were when we discovered we were pregnant with our Little Bean 18 months ago.


Here are the words we shared...

Matt's Remembrances:


As Ava’s parents, we would like to thank you for coming today, to celebrate the life of our daughter, Ava Gabrielle Harms. Her brief story is one of answered prayers and miracles, and something I hope I can get through.

Like many churches, Sara and I were required to attend several pre-marriage counseling sessions before tying the knot. We were encouraged to discuss how we handle important decisions, our finances, and even meddling in-laws. Our answers were repeatedly identical, further confirming our complete and perfect compatibility. Finally, the pastor inquired about the number of children we would like to have. Sara quickly and confidently said “Five…maybe more” while I had been thinking “three…if that many.”

In early December of 201o, God suddenly, and without consulting us, decided to split the difference by blessing us with a fourth, and admittedly unexpected pregnancy. Because we hadn’t planned or even tried to get pregnant, we were pretty sure this new little life was a “miracle” blessing from the Lord. The firm conviction that our pregnancy had been ordained and purposed by God sustained us when at Week 13, Sara began to miscarry. While we waited in our OB’s office for an ultrasound to see if our miracle baby was still living, we asked God through many tears to save it, renewing our minds with the two simple truths that have become the bedrock of our lives: First that God is good, and second, that God is faithful.

I have to admit, I thought the ultrasound would bring bad news. But I was wrong. Sara assures me that this happens on occasion. The ultrasound showed a healthy, thriving baby but also that the placenta was bleeding. That bleeding and the resulting pre-term labor placed Sara on and off bed-rest for months, and took her into and out of the hospital for medications to stop labor. When the medications stopped working, that bleeding also forced the premature delivery of a teeny tiny baby girl on May 24, 2011.

Our little miracle weighed in at only 2lbs 11oz and 14 inches long and from the beginning had the sweetest little cry. Her head was just the length of my thumb and her hand so small it could fit in Sara’s wedding band.

Because of her prematurity, our baby girl was sent to the St. Louis Children’s Hospital NICU, and immediately began impressing the staff. She came off the ventilator after only one day and quickly tolerated food through a tube. She also required intravenous caffeine, a treatment I’ve often begged for myself. So far though, I haven’t found anyone willing to prescribe it for me. Not even Dr. Starbucks.

In those early days, Sara and I were content to call our little one “Baby Girl Harms.” This however was apparently unacceptable to many others, including family members, the nursing staff, and most importantly, the clerks at the St Louis City Vital Records department. So we finally sat down and arrived at an answer- Ava Gabrielle “Ava, from the Hebrew word for Life” and Gabrielle, meaning “God is my strength.”

Ava flourished, thanks partly to the fact that Sara tirelessly held and cared for her each day, and partly I think to my video-taping of Sara tirelessly holding and caring for her each day. The nurses began calling her “show-off” and “over-achiever,” a fact that only proves she was a Harms child through and through. Despite doing so well on so many fronts, her doctors noticed one day that her head was growing too quickly. I recall confidently assuring Sara that a big head was just the genetic influence of her side of the family and that the doctor’s concerns would turn out to be a false alarm. But I was wrong.

In fact, Ava’s head was growing because she’d developed hydrocephalus, a condition where a blockage prevents spinal fluid from being distributed from its source deep within the brain. The resulting build-up of pressure progressively compresses the surrounding brain, and if not treated quickly can cause severe brain damage. Suddenly, Ava’s premature delivery was itself a miracle by allowing her hydrocephalus to be diagnosed early and treated quickly! She tolerated the hydrocephalus surgery well and with the pressure on her brain relieved, she quickly learned to breast feed, came off the monitors, and was ready to come home. In fact, Ava was discharged almost exactly on her due date.

The next months were as close to sheer bliss as possible with a newborn at home. Ava did well and each day was acting more and more like a normal baby. She routinely kept us up all night with her baby noises and cries, wanted to be held constantly, and cried every single time we brought her anywhere near her car seat. She loved staring up at our faces, enjoyed her older sister’s constant serenades and even cracked a smile or two.

In the middle of October however, Ava’s hydrocephalus returned and she required a second brain surgery. This happens to almost every child with hydrocephalus and so we had expected it. What we didn’t expect were Ava’s seizures. For reasons no one could explain, Ava’s seizures were difficult to control, requiring extra-ordinarily high doses of medications, so high that she was extremely sedated and barely did anything except sleep.

From October through January, she was in and out of the hospital as we tried different medications. I thought that if we could just find something less sedating, Ava would wake up, open her eyes and start smiling again. But I was wrong. As we finally found a treatment that stopped Ava’s seizures without sedating her, she didn’t wake up like we’d hoped, it became clear that something else was severely affecting her brain.

Frustrated by Ava’s continuing decline, I stopped by a friend’s office to vent. He happens to be a pediatric neurologist, so together, we went over Ava’s brain MRI’s, biopsy results, and lab tests with a fine toothed comb. As we talked, only one possible explanation for everything emerged- a rare genetic condition called Alexander’s Disease. Since Alexander’s disease is almost always fatal, I prayed that I’d again be wrong. But I knew in my heart that I wasn’t, that Alexander’s Disease is what Ava had. It took 28 long days for Ava’s genetic testing to confirm our fears.

On Sara’s advice, I’ll spare you most of the nitty-gritty on Alexander’s disease, but say only that the disease causes one group of cells in the brain to overgrow and over-divide, crowding out the normal cells needed to think and move. Neurological function is gradually lost until even the most basic drives to eat and breathe cease. And over time, that’s exactly what continued to happen.

Even as Ava continued to decline over her last weeks, we were blessed with one major miracle. After weeks of perpetual sleep, Ava started opening her eyes and looking at us again. When her lids would part everything at the Harms Household came to a grinding halt. The kids would come running and we’d cluster around her all vying for her brief gaze, a competition that was typically won by her sisters’ quicker feet, smaller heads and much louder voices. Ava even opened up her blue eyes to take in the beautiful chaos of her first birthday party. For the record, you can fit 85 people on the main level of South City gingerbread house, but your 15 year old air conditioner might not be up to the task.

We had prayed that Ava would live long enough to enjoy that party and almost as soon as it ended, we could see the end approaching. Over the next three days, Ava slowly and peacefully slipped away, back into the arms of the God who had briefly loaned her to us.


Sara's Gratitude:

When Ava came into being—a cluster of cells miraculously given life – she brought with her many gifts. Some of these gifts we have yet to fully unpack, but others we have already had the privilege of opening and putting on display.

Ava’s life gave us the gift richer community. My pregnancy with Ava quickly became high-risk and immediately gave us the opportunity to welcome literally dozens of people into our family – to care for our children, to care for our home, to care for our hearts through prayer and encouragement.

So many times, Matt and I would look at one another and say, “We don’t know how on earth to live the life God has given us!” And so often, as we surrendered that to God, He would arrange a timely visit from a friend, an offer to help or an early discharge from the hospital.

Even our hospital visits were peppered with encouragement and support: Friends who were hospital staff, or staff who’d become friends would stop by to check in, bring coffee and admire our sweet girl. One friend sat up all night holding Ava in the PICU so I could rest after a long day of emergency surgery. Doctors were willing to listen and treat Ava in the context of our family’s needs, even allowing Elizabeth and Ava to share a room on the night they were both admitted 8 hours apart.

Our family blog is littered with hundreds of stories of God’s faithfulness to our family through the community around us. And it is our deep desire that even as we relearn how to cook our own meals and fold our own laundry…Ken, I’m sorry, but I’m not sure I’ll ever learn to fix my own computers…that the mosaic of friendship that has wrapped us in love and care this past year would remain intact.

Thank you to our friends and family for your tireless support, thousands of air miles, countless acts of service, prayers and words of encouragement, and for staying in our lives through the treacherous emotional journey.

Thank you to the St Louis Children’s Hospital Staff for treating us like family, often for responding to our calls on the weekends, during your family vacations and in the middle of the night.

Thank you to Matt’s colleagues in the Wash U Department of Neurology, for covering his clinics and calls when he had to suddenly step away from his work responsibilities to stay with Ava in the hospital.

To my Obstetrician, who cared for both Ava and I so courageously in an effort to prolong my pregnancy. In the end, Ava’s premature delivery, which appeared at the time to be a grave disappointment, only provided us with many additional precious moments with our dear girl. We will treasure forever those early days when she could see and respond to us.

Thank you to our pastors at The Journey for making our family’s needs known to the Church, for visiting us in the hospital and at home, for praying for us faithfully and making this service a beautiful tribute to our daughter’s short life.

Thank you to the community groups who have adopted us to care for our practical needs.

And thank you to everyone who shared our story and Ava’s needs with your friends and family widening our network of support and creating a prayer chain that literally circles the globe at all hours of the day and night. Our hearts are filled with gratitude.

Ava’s life also taught us (and truthfully and continues to teach us) the value of time and people.

Holding Ava was not something you could do while multitasking. In the NICU, I called her my “trans-dermal opiate.” She would literally put me to sleep as I cuddled with her skin to skin. After her hydrocephalus surgery and discharge from the NICU, Ava was often uncomfortable. So she needed to be held tight, swaddled, and patted…clearly a two handed job.

Later, as her brain experienced the effects of Alexander’s Disease, she became limp and weighty in our arms. She needed support for her arms and head, and then special care had to be given so as not to pull out her g-tube and her IV or disconnect her monitor. Many of you came to hold her, and you can attest…she drew your full attention. Isn’t that what the people in our lives deserve: Our full attention? Ava’s life continues to teach me to value my children over the tasks of mothering and to grab hold of the time I have with them while we have it.

Among the other gifts Ava’s life gave us was growing experience of dependence on God. Through one crisis after another we came to understand that we could lean on God, without any back-up plan in sight, and that He would be faithful. We learned that He inspires people to pray for us at just the right time. That He remembers each of our children’s needs, even when we don’t and helps us to care for them, while our energy and capacity dwindles. And that He knows our needs before they even arise and is actively meeting them, often before we even ask.

Many times, I would arrange for someone to help with the girls, thinking it was for one purpose, and halfway through the week, we’d get admitted to the hospital, and the babysitter we thought was a luxury was suddenly essential.

A meal came, and THEN we needed it.

A friend sent us a check, which exactly covered our car insurance deductible the day before a stranger smashed our bumper in the Target parking lot.

Over and over we saw how God was trustworthy, dependable and faithful to meet our needs. And we learned that when we released our stranglehold of control on our life, God would build something beautiful, even when it was painfully different than we’d planned.

Finally, Ava’s life continues to give us the gift of Hope in God


We are experiencing that He can give us PEACE and HOPE when everything doesn’t “work out” and the world seems instead to fall to pieces around us. On the eve of Ava’s hydrocephalus surgery, a well-meaning friend tried to encourage me that “it would all work out, that eventually Ava would come home and learn to do all the things babies do.” In that moment, my hope, which had been free-falling in the wake of the devastating news of her hydrocephalus, hit bedrock-bottom.

I knew it may not “all work out”. Ava might not get well, or even come home. But realized our hope was resting on God, the One thing that has comforted Christian believers for centuries and given them hope in coliseums, labor camps, through natural disasters and the loss of everything the world has to offer.

That God is the Faithful God.

He is ahead of us and He will be with us.

He will provide for us.

He is good.

And that hope, which sprang up in that moment, has sustained us through the most difficult year of our lives. It allows us to grieve her death, and even in our sorrow, to have hope for the day we will see her in heaven as she is even now. Healed. Whole and Happy.

We sing a song with our girls when they’re babies, that says, “Running over, Running over, My cup is full and running over.” Ava’s life continues to bless us, even in her absence. And today, while we ache with missing our Ava-Bean. We truly feel…

Our cup, is full and running over.

*Thank you Matt Haynes and Papa Peterson for the beautiful photos of the service!

Wednesday, June 27, 2012

How We Are...

On Sunday, we marked a month since Ava passed away. The day was full of travel and goodbyes to our loved ones in Memphis, and yet the long drive allowed us to reflect on where we are after such a short time.

We are doing well. Matt and I are cherishing long evenings with the girls, playing in the yard and garden. We are aware that the space Ava left is large, and we are cautious about filling it up too quickly. We are appreciating peaceful, quiet moments, and slowly reconnecting with friends. We're watching lots of Food Network & HGTV and learning how to use our new iPhones (ok...I'm learning how to use the darn thing) Our brains are still pretty slow, (at least mine is...Matt's probably still able to decode the human genome with his eyes closed) so we're focusing on being with our family and doing things we enjoy.

The girls are doing very well. We talk about Ava all the time. Our favorite activity is sharing what we think Ava is doing in heaven right now. Usually it involves playing with Grandpa, listening to him talk like a duck, and snuggling with Jesus. We still go into Ava's room for diapers and occasionally to look at her pictures. I'm not sure when I'll be ready to begin putting things away, but not yet. It's nice to sit in her glider and think about her, smell her blankets and remember the weight of her in my arms.

The girls are very matter-of-fact in their processing, and that sometimes makes for awkward interactions with perfect strangers. I'm still not entirely comfortable with the question, "How many kids do you have?" or even comments like "Wow! You've got a lot of girls!" Sometimes I include Ava, and a few times when I've left her out Elizabeth or Ruby has jumped in with, "We have a sister Ava and she died." They're not the least bit concerned about how others might react, so I'm trying to just go with the flow for their sake. They've worked with an expressive therapist through Ava's hospice program and may continue to if it's necessary.

Life moves forward slowly, and we do what's in front of us. Elizabeth has an endoscopy this Thursday to do a routine check-up on the varicose veins in her esophagus. She's had a dozen of these, but they all require blood draws and general anesthesia, so we covet your prayers for a smooth procedure, and peace for her heart and mind. Hannah Mae is figuring out how to do life with a cast on. Today she climbed out of her crib with her cast, and her sleep sack on...she's not slowing down!

The habit we've formed of looking for and seeing all the ways God is sustaining us through the myriad crises in the last six years is continuing to bless us. We see His faithfulness everywhere. He continues to provide emotional and practical support for us...timely conversations, encouragement from His word, meals from friends, thoughtful cards, gifts and hugs which bless us every day.

Great is the Lord and most worthy of praise;
his greatness no one can fathom.
One generation commends your works to another;
they tell of your mighty acts.
They speak of the glorious splendor of your majesty—
and I will meditate on your wonderful works.
They tell of the power of your awesome works—
and I will proclaim your great deeds.
They celebrate your abundant goodness
and joyfully sing of your righteousness.

The Lord is gracious and compassionate,
slow to anger and rich in love.

The Lord is good to all;
he has compassion on all he has made.
Psalm 145:3-9

Monday, June 25, 2012

Hannah The Brave & God the Provider

A week ago, Hannah fell down a few steps in our home, and then recovered so fully that we cancelled an appointment for an x-ray that afternoon. She's been lifting, twisting, pulling and playing so comfortably ever since that it was hard to imagine anything could possibly be wrong. But a few times, when we put pressure on her forearm, she'd wince, enough that when we got home from our road trip, we thought it was worth ruling out a possible problem.



Does this look like someone with a wrist fracture in two places??? Our big girl has both radial and ulnar buckle fractures!


She was a rock-star while getting her cast...(gortex, so it can get wet!) but after 5 hours at the hospital, she was wiped out!
The best part of the whole experience was being reminded that even though our moments of crisis with Ava are over, God is still providing for us each and every day. This morning, Ms. Marcia texted me before either of us knew we'd be heading to the hospital and offered to help us get back on our feet today...and then she stayed with the big girls all day while Hannah and I were getting her arm checked out. And then a friend brought yummy dinner to feed our family moments after I got home.

God hasn't changed.

Apparently He's not in any hurry to allow us to "do" our life all by ourselves.

Sunday, June 24, 2012

Road Trip

This weekend we took our first road trip in two years. We joined my parents at a family reunion in Memphis, where I spent many childhood summers playing with cousins and friends. The last time we were there in '06, Elizabeth developed bacterial infection in her abdominal cavity, we spent our final day of the vacation in the ER and narrowly escaped a hospital admission. Thankfully, they allowed Matt (Dr. Daddy) to fly her home to SF and we basically drove her straight to get admitted to the ICU.

Our stop on the way south. The girls enjoyed catfish, fried okra and "throwed rolls" and had loads of fun!

Our little traveling champ...napless, but happy for the moment.


Representing the Cards & dining on ribs at the famed Rendezvous.

Who doesn't love sweet tea?!

Enjoying a trolley ride near Beale Street.
 
After all that, we were eager to create some new Memphis memories, and introduce Ruby and Hannah to our family and friends. We'd planned to bring Ava with us, so the trip was bittersweet, but we had a wonderful time and despite returning home completely exhausted (isn't that what family vacations are for??) we're eager to hit the road together again. In fact, Matt says, "If you live within six hours of St. Louis, we're now officially accepting bids." (Think International Olympic Committee)

Tuesday, June 19, 2012

Thirteen Years Later

After following Jesus, marrying this man was the best decision I ever made. Happy Anniversary Love.

Friday, June 15, 2012

Paradox

I should be comfortable with the paradox by now. It is, after all, the theme of this blog, and our journey over the past six years. Promise and sorrow intermingle. Beauty and pain coexist. Holland has Rembrandts and Tulips, premature births provide extra time with precious babies, a move far from family brings an experience of community.

Today is no different. We carry with us the emptiness that Ava left behind. Yet in that space, there is much peace as we find moments to be present together with our three daughters in ways we frankly have always dreamed about.

Yesterday I came downstairs and the was struck again by the awful reality that the three girls playing picnic in the living room were all my children. No little sister would grow up to join them. Moments later, Hannah and Ruby proudly showed off the pile of books they'd emptied from their bookshelves and assembled in the center of the room. I realized I didn't have anything else to do, so we sat, and read books together.

Ava's care was so all consuming.

I would resume it again in a heartbeat.

But the reality is, She doesn't need me right now. Instead, her sisters have me now, available to them in a way that blesses all of our hearts. I can grieve her passing AND thank God for the gift of time with the daughters I have with me. I can miss Ava every moment while also feeling grateful that our new normal includes space for buying our first pet, "girls-day" trips to the salon for summer hair-cuts, growing vegetables and spontaneous outings to the zoo. 

There is grace to do both.