Four Letter Words Part Two

It was the second cold of the month, and once again it went straight to her lungs. The deep rattle immediately settled down in her chest, almost before any other perceptible symptoms. This time we knew where we could be headed, but we were also several thousand miles away from Bella’s inhaler. Fortunately, both my sister and brother-in-law are physicians, and so another inhaler and child mask was quickly prescribed and we traveled back to Washington in peace knowing we could help keep Bella’s breathing where it needed to be.

But these fluid filling lungs set off a few warning bells. Colds are hitting Miss Arabella much harder than they did a year ago. And we know these could be early warning signs of a heart that’s just not performing as well as it needs to be. And so her cardiology check-up has been moved up from September to May, and we wonder if surgery is much nearer on the horizon than we have been anticipating.

And those two old antagonists – fear and pity – rise their fierce little heads again. The thought processes go something like this. What if Bella needs surgery this summer or early fall? What if I’m already at the same time dealing with a newborn needing much more constant medical care than I’ve encountered before? What if my newborn is already in and out of the hospital? What if my two babies have to have surgery within weeks, or days of each other? How on earth am I going to be present as I need and want to be for each of them? EVC can have so many implications that we have not encountered, we really don’t know just how many challenges Shiloh may face. What if her struggles are much larger and more complicated than Bella’s? And how do I love and care for my then four year old and make her still feel seen in the midst of it all? And just as I tailspin in my ability to think through, imagine or plan the road ahead, Satan likes to throw in one more nasty little curve ball, “You’re assuming there will be a newborn to take care of. That’s a mighty big assumption in your situation.

And there I find myself, full of darts and lies and half truths and fear and pity and panic at my perceived inability to walk the road I’ve been called to.

Fortunately, there is a still small voice that is also present in these moments. A voice that invites me to look back at faithfulness instead of staring ahead into unknowns. To test, and examine, and know that there has always been grace enough for today. Not that all of my todays are easy or pain free or without trial…but that each one is filled with the presence of Jesus. Which means each day I have enough. And I am gently reminded that the what ifs are not my business and not my load to carry. And the sword of truth begins to pluck out each sinister arrow.

But lately that’s not where the Lord has been leaving me. For those truths tend to drive out the fear, but they can leave pity lingering. Silently, deadly, pity can lurk in the corners.

A week or two ago when I was in full panic tailspin at the thought of two babies going through open heart surgery so close together it suddenly hit me like a wave. We could put two children through open heart surgery. Under the care of some of the best pediatric cardiac surgeons in the world. And it would not ruin us. We won’t have to sell our house. We won’t have to take on second and third jobs. We won’t have to beg family members to contribute to the saving of our daughters’ lives. The privilege contained within those sentences is astounding. And humbling. And tends to knock the pity right out of me.

It’s easy for me to fight with and for my daughters because I have the resources available to me. For a large majority of the world, a second diagnosis of EVC, a second child with life-threatening cardiac defects, would be a death knell to the family. Many in this world could not even dream of affording life saving surgery for one child, let alone two. There are plenty of corners in the world where a parent may face the choice – keep this child knowing she will die from health complications I cannot fix or abandon this child in hopes that someone will be able to fix these complications. How does a mother make that choice?

And so lately I have found my heart broken and grieved, but more for others than for myself. My husband and I snuck away one evening this week to go see Lion, and I sobbed through a large portion of it. Grieved at the poverty that drove children to seek work at night, poverty that made finding a lost son not only improbable but impossible, grotesque evil that threatens the most vulnerable. The weighty rejoicing of the plucking out of the vulnerable from dark places – the knowing that that rejoicing comes packaged with grief and brokenness and pain.

Guess where I’m tempted to go again? Pity. Only this time for others instead of for myself. Perhaps not as dangerous, but dangerous nonetheless. Because pity tends to immobilize. Pity tends to color everything as hopeless. Pity denies that there is blessing and grace and seeds of kingdom come to be found even where my privileged clouded eyes cannot perceive it.

And so I pray, not for the grief and mourning and dissatisfaction at the injustice of it all to be wiped away, but to be used as a fire to motivate. To pray and fight for the kingdom come, yes for the one growing inside me, but elsewhere as well. What this looks like in the practical sense…that is the challenge to be teased out. And I know it will look different in each season of life.

But this I cling to, and so I have hope. There is a kingdom coming. Already and not yet seeping into the corners of this earth. And the reality of this kingdom is the best antidote against both fear and pity – for myself, and for others.

 

A look at the numbers

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Yesterday started out very dark. Quite literally.

It was about 2:45am, having awoken from a disturbing dream, that I crawled out of bed and downstairs. I’m not going to lie, in the dark of the night that dream had left me shaken and unsettled. And for one of the first times in this pregnancy I watched peace vanish – which only further served to disturb me. And so I curled up on the couch, headphones in, willing my heart to praise away the darkness and Bible in hand. But the darkness lingered. I did eventually doze off into a fitful hour of sleep before it was time to get ready for the day, but I woke just as unsettled as I went to sleep and my fear of what the day may hold only grew. Read More

Brace Yourself

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From the beginning, we knew our first ultrasound in Wenatchee would be generally informative. We would walk away knowing whether this child had EVC or not. We would walk away with a list of things that could be concerning.

But we also knew the real information – the details on how big of mountains our little girl would need to climb – would come from further appointments across the mountains.

That day is tomorrow. Tomorrow we’ll get a long detailed look at our daughter’s anatomy in general, as well as a very good look at her heart. We’ll spend somewhere around four hours at the prenatal clinic – ultrasound, echo, conferences with doctors. Read More

And her name shall be

No, Toppy is not our new little lady’s given name. Confused? Go back here and read how she developed this nickname.

If you’ve been around here for any length of time, you know that naming is a big deal in our household. Throughout scripture names are of utmost significance. Names tell a story, and sometimes even need to be changed to indicate a change in the story line. Names both speak to the individual who possesses that name, as well as the God that leads them.

My love of meaningful names only deepened during my years spent in China. Here as well a name is seen as significant and is chosen with great care. And so when we have sat down to name our daughters (you can read the story behind Eliana’s name and Arabella’s name further back in the blog) there has been a specific list of requirements. Read More

Dear Toppy (February 8, 2017)

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My dear sweet Toppy,

Yesterday was your big day! Your daddy and I got to see you in great detail for the first time. This was a day we approached with great anticipation. We were so excited to learn a bit more about the treasured one God was knitting together in my womb. Because your sister has some extra special characteristics, there were certain things in particular that we knew they would be looking at. We knew we would come away knowing whether or not you shared those characteristics with her.

Well my dear, it appears as if you may be just as stubborn as both of your older sisters. You were thoroughly enjoying twisting and turning into just the right position to make the tech’s job as difficult as possible. Slowly but surely, though, the boxes were ticked off. Throughout this process we got to share quite a bit about your big sister Bella with the tech, and we slowly (much too slowly for your daddy’s liking) approached those measurements of particular interest. Read More

Toppy Eve

February 7th has been circled on the calendar for a long time.

Ask me what my due date is, and this tired mama may have to scratch her head for a minute. Ask me the date of my anatomy scan, and I can immediately answer. With the time.

It’s not that I’ve been anxious about this day. Miraculously, from the start of this pregnancy there has been the consistent and ever present presence of peace. Even now, on this eve of the day, I don’t feel anxiety lapping on the shores of my soul.

But there has been eagerness. An eagerness bordering on impatience. I think I may have confessed a time or two that I’m the planner type. The detail type. I have a fond obsession with putting ducks in a row. And so for a long time I have looked at February 7th as the date on which I would be handed some ducks. An idea of what the rest of this pregnancy will look like – occasional check-ups in Wenatchee or many trips over to specialists in Seattle? A glimpse into the little one being created, one of the bigger illuminations being gender, that leads into names and nursery and future envisioning of our family. Read More

Great Expectations

One of our best gifts this year wasn’t found under the tree.

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Yes, this Christmas season is full of expectations for our family. But this story, like that first Christmas story, doesn’t begin during the Christmas season. Its roots stretch much farther back.

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Way back to those early days, during endless skype conversations, me in China, him in Washington, when we talked and dreamed and wondered about our future family. The plan, held loosely of course, slowly emerged. Have two kids, and then adopt.

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A glimpse at the Father’s heart

Oh the emotional roller coaster the past few days has been.

Really, we are overcome with gratitude. Surgery went well, Bella won hearts and sailed through her hospital stay like a champ…although she was quite ready to get a move on by the end of it…and we made it safely home. We were blessed by the skill and care and compassion of nurses and doctors. We watched astounded as Bella marched through those first hours of her new reality with the can do attitude that we’ve grown to love in her.

And then we came home. And it was hard. As soon as we walked in the door, Bella was squirming in my arms to get down. She tried to crawl, but couldn’t quite get the casts in a position to make that possible. She wanted to see her books, but couldn’t pick them up and get them opened. She wanted to grab a ball to throw, but after multiple attempts to get it wedged between casts, she melted down in frustrated tears. The evening consisted of her seeing something, making it clear she wanted it, and then getting alternately angry and sad and frustrated. We tried to show her how she could hit a ball with the cast, or kick it with her leg. But our independent little warrior wanted to do things herself. Her way. And she just didn’t seem to understand why that wasn’t possible. Pretty soon I melted into a puddle of tears watching her. Read More

A request

It’s a big week in this nation of ours. There is a lot to be hitting our knees about. In fact, at this point, it feels like that’s about the only thing left for us to do.

But for our little family it’s big for other reasons. While others will be heading into poll booths on Tuesday, we’ll be heading into numerous doctor appointments over in Seattle. And as a nation wakes up to the decision they made Wednesday, we’ll wake up for our first surgery for our baby girl. It will be the first time my girl is taken from my arms, behind closed doors, and put under anesthesia. It will be the first time comforting her as she wakes up, still loopy, in an unfamiliar place, surrounded by unfamiliar people and things. It will be the first time curling up in a hospital bed next to her.

View More: http://lifesong.pass.us/johnson2016

All of these things are enough to make my heart tremble, but this surgery is emotional for other reasons. Read More

Sowing in tears, reaping in joy

IMG_3316I’m staring at the blinking cursor on the screen.

This should be an easy post to write, shouldn’t it? Shouldn’t the words flow fast and free? Oh the joy and celebration this day represents!

The smell of cupcakes hot from the oven wafts in from the kitchen. Only these cupcakes aren’t for the birthday girl. A good friend suddenly lost one of her good friends about a week ago. A car crossed the median into oncoming traffic, right into a wife, mother, daughter, friend…and in a split second life would never be the same for so many. Tomorrow a bake sale to offer a tangible gift of love and support to the family. And so I bake, wishing there was more to be done. Read More