Dear Arabella (June 2, 2015)

Dear Bella Grace,

Oh my sweet girl. Where do we even begin to describe yesterday? Your wordy mommy is struggling to find the right words to begin – if anything that should be an indicator of the gravity of the day!

We got to see you again yesterday. Regardless of numbers and medical findings and diagnoses, that is always such a special thing for your daddy and me. We just absolutely love getting to actually see you, instead of just feel your wiggles and kicks. And yesterday we got a real treat. The tech must have been feeling particularly generous, because she pulled out the 3d wand just so we could get a good view of your face. You, my dear, were your typical uncooperative self. Trust me, darling, the sooner you get over this camera aversion, the better. But you were quite intent on hanging out with your face pressed into your placenta (is that really the most comfortable spot?). The tech poked and prodded you trying to get you to turn, but you stubbornly held your ground. It’s ok, little girl. That little stubborn tenacity in you may be very needed. And despite your inopportune locale, we were able to get one stunning image of your face. I thought I was indescribably smitten before. But oh my goodness. Those cheeks of yours! They are already so perfectly chubby and ready for kisses to be planted. I can hardly wait for the day I can stroke them…but I will, because you need to stay and keep growing in mommy as long as possible.

We had to wait an unusually (even for us) long time in the ultrasound room while the tech went to make sure they had all the images they needed. I told your daddy then, “I think our girl continues to be an enigma.” We had once again seen a very promising number flash across the screen for your thoracic cavity. It hadn’t caught up to your gestational age, but it had continued to grow. Substantially.

Here’s the full disclosure. Going into this day, your daddy and I were optimistic. The doctors had been willing to give us a sliver of hope at our last visit, but for your Daddy and I, because we know our God, that sliver had grown quite a bit. We didn’t need the doctor’s permission for hope to grow and blossom because we serve One who does great and marvelous things. Your daddy was just plain optimistic (you’re going to love that about him). Your mommy, though, was much more cautiously – or perhaps more accurately, fearfully? – optimistic. Mommy is by nature more pessimistic, and to be honest, while I felt that hope grow, I also became so very afraid that it was going to be squashed. I had already gone through the painful emotional process of accepting the fact that I may not hold you in my arms for long…now that there was hope for more, I did not want to go through that process again.

The first doctor we met with to discuss your results was the neonatologist. This was the first time we got to meet with a doctor just for you. We were scheduled to meet with a specific doctor and your mommy had looked him up ahead of time. So I knew instantly this was a different doctor than expected when he walked into the room. And I have never been more certain that God hand-picked a doctor for your care.

This doctor was different than the rest from the moment he started to talk to us. And mommy had her suspicions from the get go that this man loved Jesus. You see my sweet girl, when you really know Jesus, it changes everything. And there is just a markedly different view of life…and death…and our control over those things.

For the first time, we heard a doctor tell us, “Be encouraged. If this was my daughter, I would be very encouraged.”

For the first time, we heard a doctor tell us, “I don’t think we can say this is a lethal diagnosis anymore.”

I cannot tell you how much it means to me that the Lord sent one of His servants to tell us this news. My sweet girl, you have now solidly moved away from that dark word “terminal.” We’re not by any means in the clear yet, but no one is willing at this point to say you have no chance at life. And so with this doctor we got to talk about what your care might look like after you’re born. About the help you might need to live. This man actually talked about the day you might come home with us. In the very same exact room we had been told two months before that there was absolutely no hope you would ever breathe on your own. My goodness girl – the emotional roller coaster you’re putting your mommy and daddy on!

But we also talked with this man about how much we would intervene in those first hours of your life. And once again, it was clear this man knows Jesus. He perfectly understood the tension of giving you every chance to fight for your life, but also being able to accept the fact that if it’s clear you were not made to breathe in this world, there’s a point where we just stop and snuggle you for the time you will be with us. Hope and humility. This doctor understood hope and humility. We got to share with him what your name means…striving in prayer…and about all the people who are so faithfully praying for your lungs to grow. He shared with us the special names God had given him for his kids too. I hope sweet girl that one day you will be able to meet this man, to hug him and thank him for honoring and believing in the value in your life. Because your mommy and daddy really needed a doctor like this on this day.

We moved on from the neonatologist to talk to the genetic counselor and the OB. They were a bit more forceful in imposing “realism,” which I know is their job. And you do my dear have quite a few battles ahead of you. Your chest cavity…and your lungs…need to keep growing at a good clip, just like they have the past two months. There is still a chance that you will not have enough lung tissue to breathe long on this earth. Once we get past that hurdle, we’re going to have to address your heart. We found out that there’s a chance we’ll be able to put off surgery for you for a couple months, but we’ll know more about that when we get a special imaging of your heart done in the next couple weeks. While those are two enormous hurdles to cross, they will not be the only hurdles in your life my dear.

Your bones in your arms and legs are still very, very short. Which means you are likely to remain my little girl all your days. No one can tell us exactly what that’s going to look like and how that’s going to impact things like your mobility – because no one really knows what your diagnosis is. You’re not fitting into any of the more common forms of skeletal dysplasia. In fact a whole team of doctors sat around a table yesterday talking about you. And were stumped. So we don’t know exactly what challenges you have ahead of you, but we know there will be challenges.

To be honest, Bella, that scares your mommy. But here’s the fact that I know and that your daddy and I will try so hard to teach you. You have not been created and formed by accident. This jar of clay frame of yours has been specially formed so that you might display the power of God and bring Him glory. And you, as a unique vessel, have the opportunity to uniquely bring Him glory in ways others do not. But that doesn’t mean it’s going to be easy. But hopefully the challenges you face will cause you to lean strong into Jesus, because my little one, there is no better place to be. You are already pressing your mommy and daddy firmly into Jesus. And while mommy sometimes craves a bit more control and predictability, she’s pretty thankful for a front row seat for seeing God at work in awesome and powerful ways.

My dear, it is becoming clear with each passing day that your name was so appropriately given by the Lord. Many, many, many people have been striving in prayer for you. And we’re going to need those many, many, many people to continue striving in prayer for a long time. Baby girl, you do not know how blessed you are to have so many prayer warriors in your camp.

You also continue to be a beautiful altar, where mommy and daddy have to daily, and sometimes moment by moment, release your days and what those will look like, into the hands of God.

And my Bella Grace, you are without question, a living, squirming and hopefully one day soon breathing testimony of Beautiful Grace. Incredible, astounding undeserved favor.

We love you so much and are eagerly waiting for the day we get to kiss those sweet cheeks.

Love,

Mommy