Tossed. Again.

Pebble Beach, on the California coast, has become quite famous for the beautiful pebbles found there. The raging white surf continually roars, thundering and pounding against the rocks on the shore. These stones are trapped in the arms of merciless waves. They are tossed, rolled, rubbed together, and ground against the sharp edges of the cliffs. Both day and night, this process of grinding continues relentlessly. And what is the result?

Tourists from around the world flock there to collect the beautiful round stones…Yet a little farther up the coast, just around the point of the cliff, is a quiet cove. Protected from the face of the ocean, sheltered from the storms, and always in the sun, the sands are covered with an abundance of pebbles never sought by the travelers…So why have these stones been left untouched? The quietness and peace have left them as they have always been – rough, unpolished, and devoid of beauty – for polish is the result of difficulties.

Streams in the Desert, July 7th

I came home last night and read those words. I don’t know if there could be a more apt description of what I was feeling than “trapped in the arms of merciless waves.”

Let me confess. Right now I could care less about being made into a beautiful pebble. Right now I’d rather be plopped down in the cove and remain as I am. I am so tired of the waves.

Yesterday started out so promising. We had our echo first and our meeting with the cardiologist. If anything, the critical hole in Bella’s heart had shrunk in the past weeks. Once again, it was clear she would not need immediate surgery. This defect was not life threatening.

We then headed into the ultrasound. We watched growth pop up on the screen. Numbers that had beautifully increased. Even her long bones had grown at least four weeks in the past five – a much greater rate than what we had seen previously. We breathed a bit easier. The growth trend was continuing. Our girl certainly was moving further and further away from that initial diagnosis. We laughed with the tech as she tried to get a 3d shot of our girl’s face, and our girl refused to cooperate despite much prodding.

And then we headed into the consult room, completely and utterly unprepared (once again) for the wave about to hit us. We sat down with a different doctor, and a different genetic counselor in a different room. The OB went over the numbers. And then said there were some new findings today. At the word “new findings” my heart sank a little. On went the explanation that the rib bones aren’t growing closer together, wrapping around the front, as they would in normal anatomy. And they believe she might have extra digits, almost certainly on a hand, maybe on a foot. These findings, coupled with her heart defect, could indicate she has small rib polydactyly syndrome.

Another lethal diagnosis. Not mostly lethal. Always lethal.

We had traveled so far out of the camp of her initial lethal diagnosis. Right into the camp of another lethal diagnosis.

And unlike her initial suspected diagnosis of thanatophoric dysplasia…seek death syndrome…that is a random genetic occurrence, this diagnosis, if correct, would not only be a death sentence for our Bella, but would have a 1 in 4 chance of being a death sentence for any future children.

Can you feel the weight of that wave as it crashes against the shore?

Nothing is definitive. They won’t really know until she’s born. This remains a possible diagnosis.

Even the uncertainty, the unknown is crushing.

This child, named beautiful altar…so aptly named. And here we are needing to release her, again. Only this time, it feels like we are being called to release future children…dreams and hopes…as well. I’m not going to lie to you – this morning? The altar is not looking very beautiful to me.

I know that I know that I know that God is good. I know that I know that I know that Jesus is still on His throne. That’s the only reason I could crawl out of bed at 4 am this morning.

But at the moment I’m battered and bruised and shaken from all the tossing. And I don’t know how to “carry on” for the next four weeks and two days until I’m induced. Until I must push my daughter from the place where she is safe and squirming and so very alive into a world in which she might not be able to survive. I don’t know how I make the toddler breakfast, run to the grocery store, do that load of laundry. How I go to parent-toddler swim classes and sing silly songs and do silly motions.

But I will. And I must. And in the midst of my pounding grief I will look at my beautiful, healthy two year old in wonder at the miracle she is.

Heading into the Seattle trip I told you how the Lord had drawn this post (click to read) to mind. That day I didn’t know exactly what metaphorical river the Lord was bringing me to cross. I didn’t know if the raging waters were raising a child with significant special needs, or if they were facing the grief of losing a child. I so hoped it was the former. Today it looks more like the raging waters of grief…and the loss of dreams. And right now I don’t see a way across. Right now the resounding, pounding thought in my head is I. Can’t. Do. This. Will someone please wake me up from this nightmare?

I’d like to tie all of this up in some beautiful, tidy, triumphant theological bow. And I know hope always waits around the corner. I know the pain and the trials and the sorrow and the merciless waves of life in this world are but a fleeting shadow. But at the moment that shadow does not feel so fleeting. And this roller coaster ride seems never-ending.

That’s the raw, honest truth. I so wish in this moment that I could proclaim to you “Jesus heals! Jesus wins!” Instead, all I can ask is that you sit with us in the grief, and cling with us to the truth that Jesus will win. And Jesus will heal. Keep praying with us friends. Please keep praying.