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!
