Comfort in Christ & Community

How support is helping make Alva's story a beautiful one

Healthwise, things have remained status quo for Alva and I since I last wrote, and we’re now at 31 weeks! Each day with our daughter continues to be a tremendous gift. If only we could figure out a way to make time slow down…it seems like an impossible task with two little boys who operate at one speed only: fast!

Though Alva is still in the fetal growth restriction category (and that is not expected to change), she continues to grow steadily at her own pace, which is a great sign she’s got a good home in utero right now. At my 30-week prenatal appointment, Garret and I got to hear her heart rate and movement pick up in response to hearing her own heartbeat, which was so cool! My midwife explained that the sound of her heart and us gathered around excited her. It made us happy to see so clearly how responsive she is to the outside world as we think about all the stimuli the boys and our everyday lives give her. She really is along for the ride with us right now. 

There have been a couple special occasions in Alva’s life since I last wrote. First, Garret and I took her to a Minnesota Twins game! We hadn’t been to one since before the boys came along, so we told her it was a big deal that she was beating her big brothers to a ballgame. (Speaking of her brothers, a huge shout out to the friends who watched Arlen and Jonah so we could have this outing!) We also ran into a college friend and visited in the stands until we were literally kicked out. Since it’s probably Alva’s one time at a Twins game, we felt it was appropriate she closed the place down.

Our church also held a very personal child dedication for us and Alva after service last week. She has now been dedicated to the Lord at the same church both her brothers were, and the same church I was baptized at last year. It means so much that our family will always share this connection. 

There were so many good scriptural truths and reminders shared about Alva’s life at her dedication. A couple that especially grabbed our hearts are:

But the Lord said to Samuel, “Do not look on his appearance or on the height of his stature, because I have rejected him. For the Lord sees not as man sees: man looks on the outward appearance, but the Lord looks on the heart.”

1 Samuel 16:7 ESV

I’ve always loved this verse, but we’ve come to love and understand it more deeply these past few months as it’s so pertinent to Alva’s life. Her body may be sick, but Alva is not her body. And though all earthly measures tell us she’s destined to die, scripture reminds us that she has life. She’s alive now, and not just in our imaginations, but biologically so on this earth with a beating heart. More importantly and eternally, though, Alva is alive because the innermost part of her—the part that God sees—is fully alive and always will be. She is purposed, loved, and redeemed in His eyes. And her life is fulfilling His purposes even now. 

For my thoughts are not your thoughts, neither are your ways my ways, declares the Lord. For as the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts.

- Isaiah 55:8-9 ESV

These verses remind us that God has a totally different perspective than we do. Since we’re living in a finite world, we can only see what’s immediately in front of us, but God sees the end from the beginning (Isaiah 46:10) and is outside our limited understanding of time and space. It’s a huge comfort that God is not surprised by anything we’re going through with Alva. And the restrictions of time, space, and medicine we see do not have power over Him. And we love these verses even more because they’re exactly what the meaning of Alva’s name points us to—God’s highness. 

We’re so grateful for how beautiful and celebratory Alva’s dedication was and know it will always be one of the most meaningful memories we have of her life. Yet it is just one of the many ways our church community is supporting us through this time—we’re so thankful for all the ways they’ve come alongside us as we know it’d be impossible to cherish her life in the way we are without support. 

We’ve been excited to share about another amazing community of support we’ve found, Abel Speaks, which is a Texas-based nonprofit organization a friend from church shared with me (and we are SO glad she did!). Abel Speaks was started in 2018 by a couple who lost their son to Trisomy 18. They have a very specific niche that we, unfortunately, fit into: They support families who are carrying a baby with a life-limiting diagnosis. They do this in a number of ways that would take multiple blog posts to cover—if anyone is interested in learning more, we’d encourage you to check out their website or find them on social media (@abelspeaks). The founding couple also hosts The Abel Speaks Podcast, which tackles commonly asked questions from couples like us. We like that the episodes are concise yet heartfelt, and some are even geared more toward medical professionals and family and friends who want to support couples in this journey. 

Since filling out a support request online about five weeks ago, Garret and I have had the chance to virtually connect with a number of other couples who have gone or are going through similar journeys. Neither of us could have known just how valuable talking with these couples would be. Every family’s journey has its own nuances, challenges, and joys. But there are also so many commonalities to be found in the experience of carrying a child with such a horrible diagnosis—the guilt and “what ifs?” we’ve felt, how we’re handling comments and questions from strangers at the grocery store, dealing with uncertainties surrounding labor and delivery, and involving older siblings. 

Abel Speaks matches new parents with a mentor couple, which is one of the most impactful ways they support families like ours. We were thrilled to be matched with a couple who also lives in Minnesota and were supported by Abel Speaks as they cherished and grieved their daughter in 2023. We’d also been desiring to connect with a couple who’d experienced Alva’s same diagnosis, but didn’t actually think this would be possible. Alva’s specific diagnosis is super rare at 1 in 100,000—just to give an example for comparison, it’s estimated that Trisomy 18, also a life-limiting diagnosis, is seen in 1 in 2,000 unborn babies. But, Abel Speaks had served one other amazing couple who shared our diagnosis, and it was so sweet and reassuring to connect with them and hear their story. Even though they’re not an official mentor couple, they’ve continued to support us, and even sent us a beautiful children’s book that has helped remind their family of God’s goodness as they grieve their son. We know it will be just as valuable for our family.

Garret describes these conversations as “cathartic,” and I couldn’t choose a more perfect word. We’ve found that having something so heartbreaking in common with other couples allows us to skip the early chapters and get right to deep stuff, and it is a relief to talk to people who really get what we’re going through. A word I’d add to describe being connected to this community is “encouraging”—before Abel Speaks, we did not personally know anyone who’d been through a fatal fetal diagnosis. Abel Speaks has connected us with so many amazing people who have walked this road before us and are still standing. In our hardest moments, thinking on that alone is a miracle.

We’ve learned a TON from each unique couple we’ve had the chance to connect with. However, there are a few things we’ve heard over and over again that have brought us great comfort, which include:

• Grief and joy can and do coexist

• God provides in powerful and unexpected ways during hardships (we have already found this to be true!)

• No matter what physical differences may be present, a parent’s love makes children beautiful in their mom and dad’s eyes

• There is a such a pure love that siblings have for their baby brother or sister—things that others might see as defects are overlooked or even adored by young children meeting their baby sibling 

• While no one would have wished this experience on themselves, none of the families we’ve spoken with have regretted their decision to carry and meet their baby in whatever capacity they could. We’ve heard the heartbreak and the pain, and no one has sugar coated that losing their baby is the hardest thing they’ve gone through. But, to hear these couples speak of their children is to hear a story of love more than anything else. The time spent getting to know baby, whether for hours or days; getting to meet and hold baby; and giving siblings a chance to make memories—these are primarily the things that seem to surface when couples talk about the children they’ve lost. And even though there will always be pain there, there’s so much good we can witness, too. 

Please continue to pray for:

• A miracle of healing for Alva

• That we would continue to prioritize showing Alva love and joy while she’s here, even as we know our days and weeks with her safely in utero are shrinking in number 

• Wisdom for medical decisions and as we fine-tune our birth plan 

• That God would give us strength to consider decisions that require us to think ahead to a time when Alva is no longer with us here on earth.