A Note from Ava's Auntie Svea

It is hard to measure the impact of a single life, especially one as brief as Ava's.  Yet, as I sat among friends and family at her beautiful and heartbreaking memorial, I realized that Ava’s life though painfully short, had impacted hundreds of people all over the world.

I know many of you also have been touched by Matt and Sara’s journey with their beautiful daughter, and I wanted to invite you to share your stories with them. Would you be willing to take a few moments and share the details of how Ava’s life and Harms family has impacted you and those around you who have followed their story?  The gift of your words will stand as a testimony that Ava’s life had incredible meaning and purpose and also be a balm of healing for the hearts of those who miss her still.  You can send your notes to BlessedByAva@gmail.com.

Thank you for your friendship and love and for taking the time to honor sweet Ava.

Love, 

Auntie Svea

Where I want to be

The day after Ava's service, Matt and his brothers drove their Mom the funeral services for Great-grandpa Jost in Kansas. My mom stayed for an extra week to help us transition to our new normal.  Now Matt is back at work and things are "going fine". The girls are doing well, in fact. After a few nights of waking up and needing extra snuggles, Ruby is more at ease. Elizabeth has mostly recovered from her pneumonia and is enjoying a more relaxed summer schedule. All the girls talk about Ava frequently and we actually have more space to be present for them...it's peaceful here...but life isn't the same, and we're sad.

We're doing some "normal life" and that's ok...but as we go to the library, swim in the pool, work in the garden and try to make grocery lists...it just feels somewhat hollow. We're being kind to ourselves, and giving each other room to be where we're at...it feels like we're doing all the right things....but none of it feels "good" in reality.

I don't want to move on. I want to stay right here. Where she was, and where the hole remains--a witness to her presence. To stop grieving her feels like it would mean losing part of the all-to-short experience I have with her.  So I don't want to be okay yet.

God, let me dream of her in heaven tonight
Dimpled cheeks and open eyes, full of light

Legs strong and graceful, dancing twirls
Golden hair surrounding sweet face with curls

While I am--with full heart and empty arms--asleep,
Fill my mind with dreams of her to keep.

Thawing

Since Ava's service, for the most part,  I’ve felt like someone has placed a cork in me. I haven’t been able to cry, I can't really think. I’m not depressed, just numb. Peaceful, but frozen.

Today, I think I'm beginning to thaw...I can feel emotions and thoughts returning...and even feel even capable of expressing them. I feel emptiness in our home. I feel quiet in the spaces where Ava's monitors beeped, and food or medication needed to be prepared. I feel the strong need to remember what she felt like in my arms, and how her life was part of ours.

In the days leading to the service, we were cared for so beautifully by our family. We appreciated it when people cried with us. We were so thankful every time someone stopped what they were doing to express sadness over Ava’s death, or a sense of missing her. We soaked up all the memories, pictures and reflections. They filled the hole in our hearts and eased our grief.

We shared a meal with family and out of town friends the night before the service and were able to hear how God has used Ava’s story to encourage others, and draw people closer to God. We read your comments here on the blog, on facebook and over email, and were blown away by what God is doing through our little journey.

As I listened to our dear friends share, I realized in those moments, that God had answered our prayers to allow us to steward Ava's life for His glory.

In our best moments, our singular desire as we parent our kids, is that they would grow up to love God with all their hearts, and that in living their lives--in whatever they do--they would draw people to their Father in Heaven. Everything else is gravy.  We're humbled and grateful beyond words that Ava did that. Her short life was well lived. And as someone said, when Ava looked into her Father’s eyes on May 24^th, no doubt, He said, “Well done, Ava Bean.”

What a gift.

At her service, we asked my dad, and our dear friends to perform a lullaby that we sing to the girls every night before bed. The first and last verse make up the song, Barocha, and were composed by Michael Card, for his album Sleep Sound in Jesus. After Ruby was born, Matt wrote four additional verses, and it has become our prayer for each of our daughters.

On the morning she died, I held Ava in my arms and sang our lullaby to her one last time.  Miraculously, as tears streamed down my face, I realized that God was answering my prayers. Every word of the song was becoming true for our sweet girl.

The Lord, bless you and keep you
The Lord make his face shine upon you
And give you peace
And give you peace,
And give you peace forever

The Lord be merciful to you,
Redeem your life and forgive you
Keep you from sin
Keep you from sin
Keep you from sin forever

The Lord heal and restore you
Bind up the sickness within you
And make you whole
And make you whole
And make you whole forever

The Lord protect and defend you
Drive out your fears before you
And hold your hand
And hold your hand
And hold your hand forever

The Lord be gentle with you
Comfort your heart and hold you
Dry all your tears
Dry all your tears
Dry all your tears forever

The Lord be gracious to you
The Lord turn his face toward you
And give you peace
And give you peace
and give you peace forever

Thank you to everyone who prayed for us yesterday, who sent encouraging emails or texts, who came to celebrate Ava's short life and let us see your sweet faces. The day was covered by unfathomable grace and peace, and despite the most painful circumstances, the service was a gift to Matt and I and our entire family. I am looking forward to sharing the service, which was filmed, but until it's available, here's a film segment which was played during the service, created by our precious and talented friends at SweetTea Media.

Ava from sweetTea media on Vimeo.

Thank you

Thank you all for your incredible outpouring of love and support. We've been inundated with messages, emails, phone calls, and cards. Every one tells us we are loved and thought of. Every one tells us Ava's life mattered to someone, and our grief over her loss is shared. Yes, we're overwhelmed, but please, don't stop. We so appreciate every person who approaches us with tears in their eyes.

Don't apologize for crying with us!

Your grief is an acknowledgement of how much you care, for us, for Ava, for our family. Thank you for letting our story grip your heart.

This past week, time has raced by in slow motion. So many feelings, so many thoughts, so little time to sit and just be sad. Three busy girls, one with pneumonia and two with colds need a mama and daddy who are present, so Matt took the week off work, friends jumped in to cuddle the girls, clean our house, bring our meals and give us space to start planning Ava's service.

And in the middle of it all, Elizabeth graduated from Kindergarten! What a blessing her teachers and therapists have been. After a week away, she jumped back into school and on the last day, she and I were able to enjoy her class' awards ceremony. She won the Great Attitude Award, and we couldn't be more proud!

 Family has started to arrive now, and we are so thankful. We've appreciated the chance to share more Ava stories, share pictures and memories and miss our sweet Ava Bean together.

We look forward to celebrating Ava's life with everyone we love on Monday.

Remembering Ava

Ava's memorial service will be held on Monday, June 4th at 10:00am at our home church, The Journey, in Saint Louis, Missouri. The Tower Grove Campus is located at 2833 S Kingshighway Blvd, St. Louis, MO 63139-1006

There will be a reception following the service.  


In lieu of flowers, please send donations in Ava's name to the United Leukodystrophy Foundation. They are a non-profit organization which provides information and support for families and individuals with diseases like the one that took Ava's life. Click HERE for more information.

We cannot thank you enough for your outpouring of love and support. Every comment on the blog, every post on facebook, every text and email is read and cherished, and reminds us just how far reaching Ava's life was. We are so very grateful.

Photo by Fresh Blend Media

Ava Gabrielle

(taken Jan 1, 2012)

This morning at 5:45am, our sweet Ava went to celebrate her first birthday in Heaven. We were able to hold her for three peaceful hours before she slipped away but miss her terribly already. After a difficult morning of saying goodbyes, Matt and Elizabeth spent the afternoon and evening in the Emergency Room where she was diagnosed with pneumonia. Thankfully, she was released tonight and is able to be treated at home.  We are so grateful for your prayers and will post information about a service for Ava as soon as it's available.

Hope Deferred

We were elated to gaze into Ava's eyes at her birthday party on Sunday. We were thrilled to watch the Cardinals game with our sweet Bean on Monday night. But throughout the week, Ava has had increasing difficulty keeping her oxygen saturation levels up. Today she turned blue for nearly a minute and needed rescue breaths to bring her back. Now we're hovering as she breathes more than 80 times a minute. Her brain is struggling to get the oxygen it needs, but can't coordinate keeping her airway open.

How do we actively trust in God's perfect will, and press with every ounce of strength we have against the door that appears to be closing?

It's too soon. Mamas shouldn't say goodbye to their babies.

 

Sisters should have time for sleepovers, and sharing clothes and secrets.

 

Daddies should get to walk their daughters down the isle.

Instead, we have a year of beautiful pictures.

We have precious moments captured in our hearts and memories.

And we have hope that God does indeed make everything beautiful in it's time. Ava is truly beautiful.  

 

A few nights ago I read aloud to Ava from the bible. I read from Mark 5, about a synagog official named Jairus who seeks out Jesus to come heal his dying daughter. Jesus agrees to go home with him. When another official comes to report that Jairus' daughter has died, and he shouldn't trouble Jesus any longer, Jesus, hearing this, says:

"Do not be afraid any longer. Only believe."

We've been asking God this week to show us how to believe. 

That Jesus is our hope and the One who can make Ava well... 

That Jesus is coming with us where we are going...

That we do not need to fear...

In the middle of our preoccupation with Ava, Elizabeth has been struggling with a virus and is enduring her sixth day of fevers. Now Hannah Mae has come down with it and both of them are pretty miserable. We need an extra measure of grace. Today two friends helped change bedding, clean floors and hold Ava. Tomorrow two more will come to help. 

Thank you Lord for your daily bread.

Cutest Cardinal Fan

On Monday night, after saying goodbye to Grandma and Auntie Tia, we took Ava to her very first Cardinal Baseball game! Isn't she the cutest fan??

It Happened!

We are full to overflowing with thankfulness that this day...a celebration of a year of miracles...happened. It really happened. It took a small army of amazing friends and family to pull off the perfect first birthday party for our sweet Ava-bean, but they did it. 

Ava did it.

And God did it!

In a miraculous answer to our specific prayers...Ava came out to play!! She woke up just as the party started and was awake for most of the party and long into the evening! Everyone in attendance got to see her sweet eyes and Ava was able to take in all the love. Truly, it was miraculous.

It's late and sleep is calling, but I had to post this sweet picture from our day...And what a perfect day it was.

Great is Thy faithfulness, O God my Father,
There is no shadow of turning with Thee;
Thou changest not, Thy compassions, they fail not
As Thou hast been Thou forever wilt be.

Great is Thy faithfulness! Great is Thy faithfulness!
Morning by morning new mercies I see;
All I have needed Thy hand hath provided—
Great is Thy faithfulness  Lord, unto me.

Anticipation

We are holding our breath, and our hearts are filling with hope as each day passes. We truly believe Ava is going to live to celebrate her first birthday! She is still having a mixture of quiet days when she mostly sleeps and alert days when she opens her eyes and takes in the world...sometimes for many hours! Would you join us in praying that she will be awake and alert to celebrate on Sunday afternoon? Oh the joy of sharing her sweetness with our friends and family.

We can't wait!

Ava's open eyes

Ava's been showing us more of her beautiful blue eyes over the last few days, and we're loving it. Sadly she's also started having small seizures, which makes the development bittersweet. We're tinkering with her meds in the hopes of curbing the seizures while keeping her more alert and at the same time, we're continuing to pray every day that God will make all those medications unnecessary!

Preparations are underway for her big birthday bash...what a happy day that will be!

Tonight, we're thanking God for...

*Grandma, live and in-person!

*Wonderful meals all week

*Friends who run to grocery stores and on random errands at the drop of a hat

*Friends who bring breakfast treats and coffee

*Friends who hold Ava, fold laundry and load the dishwasher

*Play-dates for our girls and quiet snuggle-time with Ava

*Sweet time gazing into Ava's eyes

*A date to run errands just the two of us and Ava Bean

*New friends from church who mend our daughters clothes, fix our roof, fix our gutter, fix our computer and clean our AC filter...keeping our boat afloat!

It Takes A Village

Last week one of Ava's therapists commented on my tidy house, and I laughed when I told her, I can't take any credit for it! I put every bit of energy into caring for the well-being of my husband and daughters...and the rest? Well, we are so NOT doing our life alone. It's truly taking a village.

Earlier in the week, I'd arranged with a gal from church (we'll call her "Friend 1") to help me take the three younger girls to the pediatrician for a long overdue check-up. At 8am, I received a text from Friend 2 asking if she could run errands for me. I happily emailed her my grocery list. At 9am, Friend 1 arrived to help schlep the girls into the car. We rocked the doctor visit, and were on our way home...a mere 2 1/2 hours later. We arrived home to find Friend 3 dropping off dinner for us, so she joined us around the lunch table. Moments later Friend 4 arrived to deliver a beautiful necklace, made by yet another friend who I've never met, with Ava's name and her fingerprints on little charms.

While we were passing around the necklace, Friend 2 arrived with groceries, including a special chocolate treat for me! Later that evening, Friend 5 picked up a prescription for us, while Friend 6 arrived with play jewelry and cupcakes to have a tea party with the big girls.

Six friends helped to make one day in the life of the Harms family possible. 

On another afternoon, Miss M handed off the girls to Friend 7 while I was at yet another doctor appointment and Friend 8 dropped off dinner to feed my family so I didn't have to stress when I got home late.

When I asked her to, Friend 9 went shopping on a broken foot, and brought every plaster impression kit she could find, so we could capture Ava's precious hand and footprints.

Our pastors call and visit to encourage and pray with us. Ava's nurse brings me caffeine when she arrives for her weekly in-home assessment. Friend 10 comes on a moments notice to give us an extra set of hands.  Friend 11 picks up Elizabeth from school in a pinch. Friend 12 delivered flowers and handmade treats from her daughters for my birthday. Friend 13 does my online shopping, and along with Friend 14 is my acting "administrative counsel", letting me use her brain instead of mine for problem solving all sorts of things. Friends photograph our children and film our family moments, providing us with treasured memories to keep forever.

Friends bless me with birthday conversation and yummy desserts and ambush Matt with a lunch, drag him off to a movie, and keep him going on his weekly runs. Friends leave their children with their husbands and in-laws, drive seven hours with big pregnant bellies and haul their three kids across the state lines to come and be real-time help. And still others are just waiting for the go-head.

Mrs. R is Elizabeth's angel at school, teaming with her wonderful teacher to make school a fun and safe place for our sweet girl. My sister has four young girls and a busy life, yet calls me every single day.

Grandmothers hop on planes with a moments notice to come help while Grandfathers fix faucets, repair windows, paint molding and help build garden boxes.  Friends and family call, pray, cry, laugh, send notes and gifts to encourage us, bless the girls with treats and hugs, hold Ava, do our dishes and fold our laundry. All-told, friends and family have given us thousands of dollars to help us hire full-time help. People we've never met run errands, fix our computer, shovel our sidewalk when it snows and mail our daughters notes of encouragement.  

We call this our pile o' love. It is evidence of meals that have been lovingly prepared for us week after week. And these are just the dishes that weren't disposable!

I could go on and on. Yesterday friend took the middle girls on a play date much of the day so I could have quiet snuggle time with Ava, get some rest AND a shower. This morning a friend brought her kids over to play, and folded my laundry. Tonight a friend showed up to help with dinner clean-up. Simply amazing. 

We cannot possibly list every person who has given of their time, energy or finances to support us in the past six years, but please know, we have been blessed by each act of kindness. We could spend a year writing thank you notes, and still have more gratitude to express. We are being carried, and helped, supported and served many moments of every day and it's possibly the kindest mercy Elizabeth and Ava have given us. They have drawn people into our lives and they...YOU...are loving us so beautifully.

Every time you cross my mind, I break out in exclamations of thanks to God.

Philippians 1:3 (The Message)

Motivation

We are actively praying that Ava will live to celebrate her first birthday on May 24th. Would you join us? What a blessing she has been in our lives! Yes, she's added her share of drama, but we'll be happy to overlook it if she gives us the pleasure of celebrating her first year of life.  A few weeks ago, when things were "calm" I couldn't resist picking out a few cute things for her! So I've decided to give her a little motivation by hanging her first birthday outfits up where she can see them.

 I thought she might like to see all the adorable clothes she'll get to wear when she turns one! As an added bonus, seeing them hanging there all day just makes me happy.   

As Promised...

Our beautiful blue-eyed girl.

Sister Princesses

We took these pictures this weekend.  Aren't they sweet princesses? I have an insatiable appetite for sister pictures right now. It just makes my heart so happy to capture their snuggles and sweetness.

Thank you all for your prayers, emails, texts, comments on the blog and offers of support and encouragement in response to our most recent post.  We feel so loved and supported. After Ava's scary night on Thursday, she had ups and downs over the next few days, and finally settled into a comfortable baseline on Sunday. Since then, she's had many fewer drops in her oxygen levels, and has been much more stable overnight. Praise God for a few days to catch our breath!  In fact, today she had a number of periods when she half opened her eyes for more than 20 minutes or so! This is a wonderful development! My computer keeps crashing, so I can't post the picture, but maybe tomorrow...I can't wait to share those beautiful blue eyes! 

It has obviously been a very emotional week for us. I think we've been running on adrenaline, and I, for one am crashing. In the middle of Ava's sudden decline, we said goodbye to our beloved Miss M this weekend. It was a rather sudden development as a result of a wonderful opportunity for her and we are so sad to see her go, but we trust God will guide us in the days ahead. He has already begun to meet our needs through so many friends, and we know He will continue to provide for us. He hasn't failed us yet!

We don't know how long our sweet Ava Bean will be with us. This has always been true, but we have never known so clearly that every day and every moment we have is a gift. In the past week, Ava turned 11 months old. She has lost the ability to eat by mouth and her brain is having more and more difficulty telling her body to breathe.  Many times a day she needs us to rub and stimulate her because she's starting to turn blue from the lack of oxygen.  She hasn't opened her eyes for more than a fleeting moment since Matt arrived home on Friday.

These are the signs of Alexander's Disease--too many astrocytes, cells filling up her brain, robbing our little one of her most basic abilities. Because Ava's disease is so rare, there is no path laid out for us. There is no one with whom we can compare stories or to whom we can look for more information.

Ava's hope is in the Lord alone.

We continue to pray that God would heal her in a way that would bring Him the most glory. It appears that He is taking her home.  A few nights ago, Ruby said, "Maybe when Ava gets to heaven, and God makes her whole, He can send her back to us." That sounds like a wonderful idea to me.

While we wait and hope and grieve, we are living on the razor's edge -- listening for her every breath and wondering if it will be her last, while willing ourselves to keep living life, caring for our girls and ourselves.  Our hearts are breaking over and over again and yet she could hang on for hours or days or weeks.

We don't know how to do this.

We don't want to do this.

We ask every day that God would let this cup pass. We plead, we bargain, we beg. Then we eat the bread of truth that His will is perfect, His ways are good and He loves her more than we do.

Pray for us.

Pray for Ava.

Daddy's Home

Ava Loveliness

Ava Holding Steady

As I go to bed tonight Ava is comfortable in her bed, hooked up to her pulse oximeter and her feeding tube. An alarm will sound of her oxygen levels dip or her heart rate drops for too long so we can sleep with a measure of peace. Her breathing is still concerning, but she hasn't declined, so for now we simply watch and listen and thank God for machines that can be our eyes and ears. She's not able to coordinate to eat much by mouth anymore, so we're very grateful for the ease of a feeding tube to keep her sweet checks chubby. She is also rarely awake, but then she'll suddenly surprise us and blink her eyes a few times and appear to be checking us out. Of course this means we drop everything we're doing and all descend to ooh and aaahh until she goes back to sleep. 

Matt leaves this afternoon for New Orleans for an annual work conference, where he will give a number of presentations....which means he's barely slept in the past three days. On the heels of his departure, my dear friend Abby will arrive from California to spend some snuggle time with Ava and keep me company over my birthday. Last week we welcomed Miss M, to live with us again too, so we're a full house of women for a while.

As you can tell, I won't be lonely while Matt's gone, but we still would ask for your prayers! 

*For protection for Matt while he's gone, and for blessed presentations. 

*For protection for the girls and I, along with Abby and Miss M. 

*Please pray specifically that Ava would remain stable and would not have any seizures. 

*For continued daily grace and wisdom to observe and rightly respond to Ava's breathing and feeding trouble. 

Thank you for faithfully carrying our family in your hearts. Hopefully I can post more pictures tomorrow. Ava gets cuter every day!