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!