Bear with me for a little substack inception today.
I wrote a post two weeks ago that I intended to send but didn’t. At the time, the emotions felt too big and the unknowns too overwhelming to share it on the internet.
Today, I sat down to update that post. I intended to edit it for the information we’ve gathered since and the answers we have now to at least a few of the millions of questions that’ve been raised since we learned something might be wrong with our baby’s heart.
But as I read back through it, I decided it might be better in its original form, just sandwiched between an explanatory intro and some updates at the end.
We’re so quick to want resolution in this life, so averse to the uncomfortable murkiness of all our in-betweens and not-yets.
But isn’t that where we spend most of our time? Isn’t all of life a little murky, a bit of a middle-ground, a perpetual state of learning, yet again, that we are not in control?
Aren’t we doing ourselves, and others, a disservice by not more openly sharing the raw, splintering edges of our many unsolved seasons? Of what it looks like to stand in the middle of the mess and say, I don’t know how the hell this is going to end?
This original post was written within that splintery mess. And rather than polish it up for presentation, I figured it might stand better on its own.
So, here are my words from a few weeks ago, followed by a quick update at the end of what we know now and what we still hope to answer in the coming weeks.
This morning, Ryan and I are meeting with a maternal fetal specialist to learn if there is something wrong with our baby’s heart, or if the sonographer was mistaken, or some unknown third option in the middle.
I’m terrified. And I’m aware that this is too personal a thing to write about on the internet. And yet, what else is there to write about when the little limbs I feel punching and kicking me from the inside all day are being fueled by a heart that is either totally fine or it isn’t? That my heart, which fuels that tinier one, will be either totally broken or it won’t. What is there that could possibly be said to make sense of how it feels to stand in the darkened middle between those two things?
I’ve been in a strange fog since our last appointment. Trying to put out fires at work and deal with issues that seem so small all of the sudden. I’ve done laundry and worked out and posted pictures of my dog and wept in the shower from the sheer wickedness of this waiting. This waiting to know. This waiting to learn more, to get some answers, to see this tiny organ on yet another blurry screen and find out if its jellybean shape is right or not.
How can a jellybean carry such a threat? How can a heart be broken before it ever gets the chance to beat on its own?
And how can I entertain those thoughts when it’s still possible that nothing is wrong at all?
These are the moments when faith confuses me. Not that I find myself without it, but that I question what exactly I’m supposed to have faith in, or how the breadth of Gods promises might apply to such a specific situation, to this litany of what-if’s, to this jellybean.
His word tells us that He is good, He is faithful, He is near to the broken-hearted and never forsakes us. He tells us not to fear, to follow Him, to rejoice always, to lay our burdens at His feet.
He says that He is making all things new, He works all things out for our good, He pursues us with incalculable tenderness and mercy, and He is writing the story of redemption for all His people, for all of time.
But it doesn’t say anything specifically about the maternal fetal specialist appointment I have at 10:00 this morning. There is no promise that our doctor will look us in our watery eyes and say that our baby will be fine. There is nothing in His word that speaks specifically to the outcome of this question, this appointment, this moment in my life.
And the good-christian-girl in me knows that true faith, genuine faith is the act of saying that I will, and I can, trust Him even if the nightmare comes true, even if the answer is our worst-case scenario.
I know that the Christian faith offers so much more than a genie-in-the-bottle God who answers our prayers just how we want Him to. I know that for the mature believer, our faith is in the Person of Christ, not the power that He holds to give us what we want.
But today, all I want is for Him to wield that power to give us exactly what we want.
Today, I want the best-case scenario.
Today, I want three wishes and for all of them to come true.
To put it bluntly, today, I don’t want the mature kind of faith to be asked of me. I want the easy way, the cheaper route, the one that ends with a fleshy, pink, perfectly healthy bundle of a baby in my arms in three months’ time.
This isn’t the kind of honesty I’m proud to present in a semi-public forum. I’d much rather write about my unwavering resolve to praise God in the midst of this storm and so on and so forth.
But that’s not where I am this morning. It’s not where I was on Wednesday when we first found out and I smeared snot all over Ryan’s shirt in the elevator leaving the hospital. It’s not where I was on Friday when I snapped at a colleague because the thing she was asking me about seemed so infinitely stupid in light of this looming fear. It’s not how I felt all weekend trying to distract myself with Grey’s Anatomy and packing for our move and trying to somehow disguise the number of Crumbl cookies I consumed while Ryan was away.
And it’s not how I’ve felt in the midst of the endless string of prayers in which I’ve begged God for good news and easy answers.
In fact, I keep telling him so. That I want to trust Him, that I think I mostly do, but that it is excruciatingly hard to do so when it feels like so much is on the line and I wish He would just come out of the lamp and fix it.
And maybe that sounds petulant or immature or disrespectful to say to the God who has never failed me - who has pulled me out of the depths again and again and whose glory is on display for all the Earth.
But the God I follow doesn’t demand stoic devotion. Nor does He require of us perfect faith, or a blind acceptance of churchy platitudes, or the ability to step out of our divinely-given human emotions.
He wants our honesty, our whole, human selves. Not some buttoned up version reciting prayers we don’t really believe because it’s what we’re supposed to do.
And that’s the kind of God I want in the exam room with me this morning, and in the hours after that will be filled with either celebration or grief, and in every moment to follow.
The one who sees my jellybean heart for all its faults and failures and loves me anyway. The one who formed the tinier one I carry too and knows exactly what will come of this exam. And the one who will be with us in every hard, holy, happy moment of her life, whatever it may entail.
Fast forward to the present day.
We learned at that appointment that our baby does indeed have a heart defect that may require surgery after she’s born. But we also learned that, according to our doctor, if your baby is going to have heart surgery, this is the one you want, (which was reassuring-ish??).
We prayed for the best news possible, feared the worst news possible, and landed, at least for now, somewhere in the middle.
There’s a lot we still don’t know. And a string of appointments with our midwives and the specialist and a pediatric cardiologist to learn as much as we can about what to expect and how to care for our baby best.
But for now, we are thankful for the sonographer who saw the defect and allowed us the opportunity to learn about it early. We are thankful for our access and proximity to doctors with lots of letters after their names who specialize in tiny jellybean hearts. We are thankful for our families and close friends who prayed with us leading into that appointment and who continue to walk with us now into whatever is next on this journey. And we are thankful for a God who lets us be our raw, splintering selves in every raw, splintering season and loves us, and our daughter, abundantly.
If you are the praying type, I ask you to join us in praying for continued answers and understanding, for diligent and skilled doctors, and specifically for her heart to form in such a way over the next three months (hello, third trimester!) that she would not need immediate surgery after she’s born.
I will keep you all posted – in the somewhat irregular, overly wordy way that I do – as we go.
"But the God I follow doesn’t demand stoic devotion. Nor does He require of us perfect faith, or a blind acceptance of churchy platitudes, or the ability to step out of our divinely-given human emotions." I LOVE this, and I love you and I love that tiny lil bb girl.
I don’t know you, but I enjoy reading your pieces, and I’m praying for you and your baby. 🤍