New Day, New Skills
Friday, April 18, 2008

After my last post, 6 days passed before Salem decided she wanted to walk again. She took a couple of steps here or there, but no sustained walking. But on the 6th day, she went to town again. I've added several new videos. I'm not sure which ones people will enjoy (or be completely bored by), but I'll post them all here. Suffice it to say, these days are beautiful for our family. We celebrated her achievement by throwing Salem a "Walking Party." We even had a giant cake which before cutting we all sang "Happy walking to you, happy walking to you, happy walking, dear Salem. Happy walking to you." And what party would be complete without an Elmo pinata? Poor Elmo. Salem was in heaven. Her favorite part of the party was hanging out with the big girls.

Every day Salem is doing something new. And every day we are amazed. It is so much fun to watch her make new connections and delight herself in learning new things.

Each of the following pictures is linked to a video of Say having fun on the sidewalk.

Stepping out
Friday, April 4, 2008

The sense of euphoria is hard to translate into words. All I know to say is that today is a day of miracles. Of wonderment and praise and thanksgiving and pure, pure joy. It feels like we’re walking through a dream…the same dream both Josh and I have had over these many months with our precious baby girl delightedly running so free. Except for the past several hours we’ve actually lived this dream, and I think (I am trusting) it’s one from which we won’t have to wake to disappointment.

It’s a magical feeling to watch Salem today—finally taking hold of this dream for herself—enjoying the fruits of her long hours of labor and striving. We are humbled by these past several hours….knowing that they are a gift… these first steps of hers are a precious gift that we had dared to dream never knowing whether she would actually be able to enjoy. And, in fact, we weren’t the only ones who wondered, since at least 2 medical professionals who shall remain nameless conjectured that she would not be able to walk.

We rejoice in this gift, and I wish that I could somehow spill all of these emotions right here onto this page for the world to read, but I think these videos (especially the precious one of Josh dancing around madly) might convey our joy even more than my words possibly can.

Before getting to the videos, I need to give a little background info on some of the developmental progress that Say has made in recent weeks. I’m really sorry I haven’t written in so long. I keep meaning to write on good days and on bad day and on some days in between, but I haven’t. Now I really sort of regret not chronicling Salem’s amazing progression since February.

Over the past several weeks, Salem has continued to amaze us. She’s learned a few signs (although maybe a few too quickly, because now she’s reduced all the individual signs into one clapping sort of creative improvisation of hers). But there’s no question her receptive language skills are improving more and more. She’s pulling up like a champ—on everything that will hold still long enough and cruising around furniture as if she’d known how to do it her whole life.

As I mentioned, her receptive skills continue to improve, and she’s begun to try to play fetch with our dog, Jezebel. She’ll crawl over to Jezzie’s favorite toy, and hold it up and when we ask her to hold it high in the air, she’ll lift her arms up over her head and laugh. Click here and here for a couple videos of Say having fun trying to coax Jezebel to play fetch.

She’s made amazing strides pushing her walker. She has loved this thing….walking it up and down the sidewalk as fast as she can and feeling so free. Click the picture below for a video of Say enjoying her walker.


And

And since loving her walker so much, she has graduated to her popcorn popper. Last week she decided that she could stand behind it and balance for up to 30 seconds just content to stand there surveying her territory from “on high.” And on Sunday (after some amazing work that Erin and Jess did with Say over the weekend—thank you so much, girls), she began to actually PUSH the popcorn popper. As in….“I’m done with just standing here passively looking at the world. I’m ready to get out there. So if you’d just step aside…”

To see a couple of videos of Say staking her claim up and down the local sidewalk, click the pictures below.

Then on Tuesday of this week Salem stood unaided for the first time during her PT session with Ronda. She stood for about 15 seconds and then about 30 seconds, and I stood gaping and astonished and when I came to my senses, I squealed, which made Say cry. But it was like watching a miracle unfolding in front of our eyes…and her response was so like Peter walking on water. As soon as she recognized what she was doing, she began to fall…but as long as we kept her distracted and talked in a casual tone, she would stand steadily.

And finally-- today. I met some friends at the park, and as we sought shelter from the blistering heat in the shade, Say began to stand (she was wearing her pink cowgirl boots, which give her more ankle support). She stood. And stood, and I timed it. 10 seconds turned to 20 which turned to 30 then 40….all the way to 72 seconds before she fell—more than doubling her previous Tuesday record of 30 seconds. And when we came home, we showed her daddy, and she was so proud. And when I asked her if she could hold my hand and stand on her tip toes (something she’s never been able to do before), she just looked at me and smiled and stood up on her toes—ok not exactly her tip toes, but at least the balls of her feet. At first I didn’t believe it…couldn’t believe that she’d actually understood what I was asking her to do. I thought it was luck (shows how prone to doubt I am), so I asked her again if she could stand on her toes for her daddy, and she did. Over and over, and she was so delighted with herself. It’s yet another example of her receptive skills improving dramatically (we’ll try to post a video of that tomorrow).

After her nap this afternoon, Salem had renewed energy, so we decided to break out the video camera to film her standing just to see how long she could do it. After a couple of minutes and to our complete astonishment, Salem took several steps forward. Josh and I can’t even remember whom she stepped toward first, but it was one of the most thrilling experiences of our lives….such a precious victory of hers and such a complete shock to us. We had been hoping and believing that we were reaching beyond our dreams to hope that she might walk before her 2nd birthday in July, so this was a total surprise. Absolute euphoria followed these initial steps, which of course led to more confused tears on Salem’s part and many joyful ones on mine. Those videos are on our big camera, so unfortunately we haven’t figured out how to load them here, but this video linked to the photo below is from a few minutes after her first steps….

We celebrated by taking her to McDonalds (I think she’d earned some well-deserved nuggets), and when we set her loose in the playground, she took off. Click the picture below for the progress, and keep in mind that this video was taken about 90 minutes after her first stumbling steps.

A dear friend of mine wrote tonight after seeing Josh’s jubilation in the first video of her steps. She wrote that his joy reminded her of the verse Zephaniah 3:17: “The LORD your God is with you, he is mighty to save. He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing."

I couldn’t agree more. With such rejoicing, who can possibly sleep?

P.S. Here are some other recent pics. :-) Too fun to resist posting, since it's been so long.

Every day a miracle
Monday, February 11, 2008

Every time I sit down at the computer to write an update, I am overwhelmed by how wonderfully these days are passing. Salem is making tremendous strides. I will try to list some of her growth, but I know I will forget so much of it.

As you know, learning to clap last month was a tremendous feat for Salem. Last weekend I flew to Nashville to visit my precious friend Erika and to meet her sweet baby boy. While we were in town, Salem decided that she wanted to try her hand at crawling upstairs in my parents’ house. Unfortunately, I don’t have a great video of that to upload, so this picture will have to suffice. It was as if Salem had some Twisted Sister playing in her head. She’d just had enough of being stuck at the bottom of the stairs, and she wasn’t going to take it anymore. I saw her crawl around the corner, then I heard her say “Ah Ah” as in “Stop watching Jeopardy, Momma, and come help me!” I poked my head around the corner, and she was on the second stair already! So up she climbed…and climbed….and climbed.

The next day she decided to pull up. . 2 nights ago, Josh went in her room in the middle of the night to try to soothe her back to sleep (poor, congested girl), and he discovered a large water spot on the carpet. We didn’t know what it was until the next afternoon when we peeked in on her while she was supposed to be napping. She had pulled herself up in her crib and was wildly throwing her hands around the top of her dresser (where a cup of water had been placed supposedly out of her reach the night before). Note to self: cups are no longer safe on top of the dresser. Neither are finger tambourines from Turkey—a gift from 2 wonderful friends. Click the picture below to see a video of Say pulling up (she did it too quickly for me to get the camera on her for a long shot).

This week Say is making huge strides in putting her rings one on top of the other and placing items in a container. I can’t even express how wonderful it is to see her making progress in these areas that we have been working on for so long. Click the pic below for a long, boring video of this that only we find exciting. :-)

Add to these marvelous feats Salem’s latest method of communication: sign language. Or at least one sign. The sign for “eat.” Which apparently now means “I want some…” of whatever it might be….
Me: Salem, do you want some food?
Salem: (signing) Eat
Me: Salem, do you want some water?
Salem: (signing) Eat
Me: Salem, do you want to ride Rody?
Salem: (signing) Eat

Click the pic of Salem flashing her daddy an adoring smile below to see a video of her signing “eat” at the appropriate moment. Who knows what might come next?!

She seems to be having so much fun with all of these new-found skills, and so are we!

In surgery news, there is good news to report. Dallas, Boston, Philadelphia, and a new surgeon here in Orlando have all weighed in and share opinions in at least 2 things:
1. Salem will require surgery to repair this defect- a rare complication from surgery.
2. We can wait--maybe for a long time…as in a year or 2 or possibly 3.
It is amazing to be able to take some deep breaths and rest, hoping that we can wait for a subsequent surgery for a long time. And it was wonderful watching the urgent surgery date (Feb 6th, which ATL scheduled) come and go without me even noticing. What freedom!

We have 4 appointments looming on the horizon, but we don’t expect anything new with those, which is so freeing. These victories are giving us real hope. I forget how much fun it is to hope with expectation.

Melkam Timkat
Saturday, January 19, 2008

Today we celebrate Ethiopian Timkat. It is one of the most significant holidays on the Ethiopian calendar. It honors Jesus' baptism in the Jordan River, and the celebration lasts for 3 days. In the Orthodox church, people celebrate this holiday with communal rebaptism and by the priestly parading the Ark of the Covenant. To see a wonderful video done by National Geographic detailing the holiday, click here.

We continue to wrestle with a decision about where to go for Salem's next surgery. We are consulting with some amazing surgeons across the country (Boston, Dallas, & Philadelphia). It looks like that decision will take a few weeks and a visit or 2 to our top choices.

Meanwhile, our friends Erin and Corey Nolen have given us yet another gift- a new slideshow of Salem. I wanted to wait to post it untl this day of sacred celebration. Please click the picture below to view the slideshow.

In case the wording is difficult to read, the card says:
Melkam Timkat
Celebrating Ethiopian Timkat Epiphany,
honoring the baptism of our Savior
and wishing the peace of His love
to descend on you in the coming year.
Love,
Josh, Keely, & Salem

Applause
Tuesday, January 15, 2008

She was sitting in her highchair with beans all over her face and out of the blue, she brought her hands together. I squealed. Josh was moments from walking out the door, and she did it again. This time we both squealed, which made Salem laugh, so again and again she started clapping. I can almost hear the applause from Heaven.

To see video of our big girl click here.

All votes are in
Monday, January 14, 2008

The surgeons have replied. Tecnichally, only 1 surgeon has replied (from Dallas). The Atlanta team has had their expert nurse call us. Friday we heard from Dallas and were told that Salem would benefit from a second surgery. This afternoon we heard from the Atlanta nurse, who also confirmed that Salem would require a second craniotomy. The teams differ about the timetable and the urgency of a repair.

We face a difficult decision ahead and would be so grateful for your prayers.

It never hurts to try...
Thursday, January 10, 2008

Ok, to our list of secret weapons, we must add Arnell. He’s amazing. He works with the radiology department at the hospital, and he like Dawn has moved Heaven and Earth to fit Salem into their slammed schedule. I called him this morning with Salem fasting just in case there might have been a cancellation. He asked me whether I could come at 10:30 am. I couldn’t believe it! Down to the hospital we raced, and after only a few hours we emerged with our second round of anesthesia done for the week.

Salem did beautifully—I still can’t believe that she will tolerate fasting from food and drink as well as she does. The anesthesiologist was really nice today. He’s Egyptian, and he worships at the local Coptic Orthodox church, which means he practices some of the same major holidays that most Ethiopians practice. We talked about the Timkat celebrations coming up and wished each other a Happy Timkat! And mercifully he remembered how difficult a stick Salem is, so he didn’t make her suffer through countless needle attempts while she was awake.

The test was done quickly, and one of the very kind nurses named Linda allowed me back to stand next to Salem as she awoke from anesthesia. And the best news of all is that because the test was done so early in the day, the radiology report was available to pick up this afternoon. That means we were able to Fed-Ex the surgeons copies of the CT scan and the radiology report in the same package (as opposed to sending just the images and having to fax the report to them the following day). Overall, it was a really exhausting day, but at least we’re making progress toward reaching a conclusion.

P.S. Our home computer crashed last night, hence the delay in the update. This was the second hard drive computer crash we've had in 5 months. When will we learn to back things up better?

Stardust Coffee and Video
Wednesday, January 9, 2008

It felt like a magical night. We had returned home 5 days prior from a long journey, and it was good to be back. It was a cool evening, and some fresh hot chocolate sounded good. We piled in the car and drove to our favorite independently-owned, eclectic coffee shop. Actually the shop serves coffee and hot chocolate alongside a broad selection of international beers and wines. And let’s not forget the varied collection of videos that they have available for rent. It’s a gritty sort of place with interesting people walking in and out constantly with a common goal in mind—a chance at some good conversation. I was once propositioned by an inebriated homeless man there, but I took it as a sort of scary compliment. I think this little shop has the highest concentration of people with purple hair in the county. One of these days I want to dye my hair purple just so I can order something from the counter and feel like I belong there. Not surprisingly, going to Stardust temporarily satiates our not-so-secret desire to flee suburbia for life in a hip urban area.

So there we were. A family of 3 drinking hot chocolate with piles of whipped cream on top. Salem loved tasting the hot chocolate. I was having fun people-watching, convinced that our conversation was the most boring in the room (but oh so comfortably our own). I was wearing a sweater (probably my favorite ever) that my mom bought me over Christmas during another wonderful day. As I was putting my cup to Salem’s lips, Josh flashed her one of his “I’m gonna get you” looks at her, and she immediately flung her arms out with gleeful terror—I wasn’t quick enough to intercept the cup, and the hot chocolate poured all over my sweater. Somehow it just didn’t matter.

As we were walking out the door, we put $3 in the photo booth machine and in our excitement, we failed to read any of the directions, but somehow the pictures turned out decently.

I wish all days could feel so magical, but then I guess they would be hard to appreciate.

Today had its own bright spots—in a different sort of way. We got a call back from the nurse of one of our Atlanta surgeons this afternoon at 4:37 pm. Despite the late hour of the day, we were able to accomplish a lot in response to the concerns she outlined. The Atlanta team is concerned about the shape Salem’s skull is taking, and they asked us to do a CT as soon as possible. This requires us to get a written prescription from our doctor, schedule an appointment through the scheduling office, obtain authorization from our insurance company, and usually….wait. We scrambled to get a prescription from our excellent pediatrician, called the insurance company and tried the scheduling department—trying to do all of this within 23 minutes (closing time). Typically sedation appointments like the one we had on Monday with the MRI take months to get, but we have a secret weapon….and her name is Dawn. She does the radiology scheduling at the local children’s hospital, and I seriously don’t want to know where we would be without her help. Have you ever met someone who has gone WAY over and above the call of duty for you? Every time we talk to Dawn, we are amazed by the kindness she offers. She’s one of the few in the medical profession who cares. Despite the enormous caseload she juggles, she gets it, and somehow it makes our journey so much easier to walk. She gave us the first available appointment she had on Monday afternoon. There’s still a remote chance we could get something sooner if there happens to be a cancellation….


Waiting
January 8, 2007

Yesterday Salem bravely faced her 3rd MRI. This was her 2nd post-surgical MRI. The first post-surgical MRI in October revealed fluid (probably cerebral spinal fluid) leaking from her dura under her skull. Salem's surgeons believe the most likely source of this fluid to be the dural tear she suffered during her August surgery. This morning we received the radiology report from yesterday's MRI, and unfortunately it reveals more fluid leaking...this time from the right side under her skull. In addition to this, the radiology report mentions the protruding bone on her left side, which has been concerning us for some time. We have wondered whether this protrusion might indicate a problem with the structural integrity of the plate that was placed in her forehead in August.

We FedExed the MRI yesterday to both of our Atlanta surgeons and faxed them the radiology report this morning. We are currently waiting for their response, which could take some time. In the mean time, we are seeking a 2nd opinion with a leading surgical center in Dallas. We have been very pleased with their responsiveness so far, though we have no idea what reaction to anticipate from any of the surgeons.

I don't know how to pray specifically--except that we long for everything to be right with Salem. Please pray for her, if you feel so inclined. And for wisdom for us as we could face some difficult decisions ahead.

These 2 pictures (which I LOVE) were taken by my friend Erin in Birmimgham. She takes amazing pictures, and she can take your pictures too if you'd like for her to. Click here for her website information.

Christmas in the air
December 20, 2007

This has been a really good week with Salem. She's been growing in some exciting ways. Click on the first 2 pictures to see what I mean. :-) The third picture is linked to a video of Salem making progress in a different sort of way. Displaying her defiant side a little. Or a lot.

Here's a little babbling....

I really wish I could have caught her babbling up a storm like she's been doing, but every time she sees me reach for the camera, she gets stage fright. :-)

And here's some serious motor progress...

And here's a little defiance....but seriously, with a face like that it's hard not to laugh.

The Assignment
Friday, December 7, 2007

I feel really strange posting this online, but somehow it feels right too. Pasted below is a paper I have written in response to a book that was assigned in my Systematic Theology course. I'm sure that my doctrine isn't perfect and that there are probably grammatical mistakes galore, but the core of the paper (toward the end) is a beautiful dream--allowing me to explore what Salem's life might look like. The assignment invited us to dream about the way some brokenness in our lives is supposed to be.

In response to Not the Way it's Supposed to Be: A Breviary of Sin by Cornelius Plantinga Jr. (Grand Rapids: William B. Eerdmans Publishing Company), 1995.

The Shalom of Salem: Reclaiming the Way it Ought to Be

     From the first moments we saw Salem’s beautiful, brown eyes staring at us through her photograph, we knew it was possible she would experience hardship even beyond what she had already endured. Her head measured small on the growth chart, and she had been plagued with multiple infections already. Even as doctors stateside cautioned us as to the possible risks in adopting her, we knew that God had brought this child into our lives as a beautiful gift. As the weeks passed, Salem’s health continued to fail, and she succumbed to other serious infections. We were permitted to travel to her, and our journey as a family began in earnest. Though Joshua had chosen a name for her meaning “peace,” she has known little of it since her earliest days. Watching Salem endure such hardship and now facing an uncertain future, we know that this is not the way it’s supposed to be. Ultimately, however, we trust that Salem will feel the embrace of the great Shalom and be offered life in all its fullness in every way it’s supposed to be.

     Plantinga weaves the concepts of sin and of consequence beautifully throughout his book. Applying these concepts to this paper, we recognize that Salem is a sinful person. Though we readily affirm that, we do not attribute her developmental challenges either to her sin or to ours (or to her first parents). We trust the truth of Jesus’ words in response to his disciples’ question, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus replies that "Neither this man nor his parents sinned, but this happened so that the work of God might be displayed in his life. As long as it is day, we must do the work of him who sent me.” (John 9:2-4) From these words, we breathe deeply, trusting that Salem’s pain was not a direct consequence of our sin. Despite this, wrapped into this complicated concept of God’s power being made manifest in our weakness, we also know that Salem’s hardship is simply and yet agonizingly the consequence of our fallen state—the consequence of a world plagued by starvation and poverty, a world that is broken and ailing.

     Plantinga defines shalom beautifully as a utopian sort of ideal, a calm sort of peace that though placid also actively flows with a strong current of abundance that delivers life all around it; “In the Bible, shalom means universal flourishing, wholeness, and delight – a rich state of affairs in which natural needs are satisfied and natural gifts fruitfully employed, a state of affairs that inspires joyful wonder as its Creator and Savior opens doors and welcomes the creatures in whom he delights. Shalom, in other words, is the way things ought to be." (Plantinga, 10).  Plantinga’s shalom is this beautiful, balanced state wherein all things work together harmoniously. It is a world of order and delight, one joy flowing to the next, a world of abundance and contentment.

     Conversely, according to Plantinga, the vandalism of shalom is sin, wreaking havoc on this tranquil scene, disrupting its harmony and introducing chaos. Plantinga describes sin as a willful disruption of God’s designed order. He stresses the intentionality of this disruption and of its audacious insult to the Creator; “In sum, shalom is God’s design for creation and redemption; sin is blamable human vandalism of these great realities and therefore an affront to their architect and builder” (Plantinga, 16, emphasis mine). In another portion of the chapter, Plantinga claims that “Sin is culpable disturbance of shalom” (Plantinga, 18).  I want to deviate slightly from Plantinga’s definition here to suggest that while some disturbances of shalom are clearly willful acts that fly in the face of God, we also suffer indirectly as inheritors of the Curse. In countless ways sin disrupts shalom in our lives, leaving chaos as a consequence of both our sin and the original sin. In addition to these “culpable disturbance(s)” of shalom, we experience daily disruptions of peace that are not directly linked to willful acts- but rather are byproducts of the inherited, willful disobedience. Applied to our situation, for example, I acknowledge that Salem is a sinner, but since she has not willfully subverted God’s shalom, she suffers disruption in many ways in her young life as an indirect byproduct of the Curse. She bears on her body and in her brain the marks of a fallen world.

     At 17 months old, Salem is a delight to us. She is our pride and joy, a gift whose laughter is balm for the deepest sorrows. Even with all of the joy she brings, there is no denying the fact that Salem has faced a road that should have looked different. She suffered the loss of her first family, her first country, her first language, her first culture. She has endured life-threatening infections and faced a major cranial surgery that required removing her forehead and reconstructing some of her facial and cranial bones. During that surgery, Salem suffered a dural tear that might require another surgery to prevent her brain from herniating. Crawling at 15.5 months did not come easily for Salem. She works so hard to try to walk, and now at 17 months, she has a long way to go before she’ll reach that goal. Every milestone she achieves requires enormous effort. Even fairly simple language babbling with any consonant sounds feels almost impossibly out of reach. We have no guarantees and wonder if she will ever be able to say, “Daddy” or “Momma.” She works hard at 4 different types of therapy each week and patiently endures visits to doctor after doctor in our quest to find answers. In her short life, Salem has been long-suffering. And the road stretches on before her with difficult prognoses. Possibilities of new surgeries, doubts about whether she could attend school, pessimism about her language/social skills all loom before us.

     It is painful to try to imagine the way it is supposed to be for Salem, because it feels so far from our grasp, and indeed it is. But we trust that one day Salem will know the Shalom that was intended for her from the creation of the world, and in that hope I press on to dream. I dream that my Salem could hold the gaze of her mother for seconds on end—minutes even. I dream of Salem pulling herself up to stand and cruising around furniture. I dream of Salem with her legs unencumbered, running with abandon. I dream of Salem feeding herself cookies-and-cream ice cream, one spoonful at a time. I dream of her holding a drumstick in each hand and banging them together to a beat that she and her daddy create. I dream of Salem walking through fields, picking heads of grain from their stalks with her fingers in a perfect pincher grasp.

     In the world that is “supposed to be” I see Salem shouting her name from a cliff, and while she’s up there she continues on to exclaim to the world what she is passionate about, what gives her joy and makes her cry and what things she finds most beautiful on this earth. I see Salem with opinions and the ability to articulate them, even fiercely at times. I see Salem performing impromptu puppet shows in the driveway on warm summer nights. I see Salem growing in her knowledge of God’s love for her. I see Salem slinging mud at the boys on the playground. I see her reading. I see her swimming laps around her brothers and sisters in the pool. I see Salem serving the poor in radical ways and pursuing justice with a pure heart. I see her dreaming of becoming an astronaut or a momma (or both). I see Salem playing the piano with her beautiful fingers or singing at the top of her lungs with the radio as she drives out of the driveway on the day she turns 16. I see Salem disagreeing with her parents and challenging them to live more radical, gospel-driven lives. I see Salem with mixer in hand in the kitchen, turning to her great-grandmother’s cheesecake recipe and perfecting it in ways that her momma never could. I see Salem riding the tractor, mowing the field while her horse runs beside her. I see Salem going to homecoming dances and finding someone who loves her almost as much as her Daddy and I do and one day committing her life to walk beside him as her partner. I see her in whatever ways she wants to see herself, freely embracing life in the way it ought to be.

     And when it’s all said and done, when it is finished and when it is just beginning, I see Jesus wipe the tears from my eyes and from Joshua’s. I see Him wipe the tears from Salem’s eyes and invite her, invite us all into his new heavens and new earth to live exactly as He intended- exactly as it is supposed to be.

Tuesday, November 20, 2007

Hey, everyone, it's been a crazy day. lots to share, but not a whole lot of energy to write it. in summary, we met with the doctors and have good news and bad news. the good news is that we don't have to have surgery right away (maybe not at all)--and that the problem of fluid might not worsen. the bad news is that the fluid between her dura and skull is not supposed to be there. it looks like the fluid is there because of a tear in the dura during surgery (we were already aware of this tear but the surgery notes indicated it had been stiched successfully). in the coming months we'll have to reevalute with another scan series. if the problem has worsened, salem will require corrective surgery which would be significantly invasive. if the fluid has not continued to build, it might be something she'll have forever. the doctor suspects the fluid is cerebral spinal fluid.

best case scenario: the tear has healed itself and will not continue leaking fluid
worst case scenario: the tear would continue to leak which would eventually cause a hernia of the brain matter and significant brain damage. the doctor didn't seem too concerned about the worst case scenario after examining Salem, although he did seem to think based on his review of her scans prior to our visit that this is what was going on.

a lot to think about. thank you for loving us so well.

From Wrestling to Worship
Monday, November 19, 2007

For the past several days I've had some thoughts floating around in my head, but I haven't had any time to sit down to try to get them out. Now that I am sitting at the computer, I'm pretty sure I've lost the moment and now the thoughts will sound hollow in some way. Still, it's worth a shot. I hope this will make sense somehow. Forgive me, if they sound jumbled and trust that inside my head (which might be where they ought to stay), I was encouraged by these thoughts this week.

On Tuesday mornings, I take a course at the seminary on Systematic Theology. This week the professor opened by talking about the passage out of 2 Corinthians 12:7-9 where Paul speaks about his thorn. "To keep me from becoming conceited…there was given me a thorn in my flesh, a messenger of Satan, to torment me. Three times I pleaded with the Lord to take it away from me. But he said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me."

After opening with that passage, we had a discussion about suffering and what it looks like to wrestle through sorrow (or in Paul's case agony) with faith. The professor talked about the searing pain of grief. He said that so many times in the thick of that pain, all we can do is question, sometimes defiantly shaking our fist at God and demanding that He bring restoration or comfort. In those moments of agony many of us wrestle like Jacob (Gen 32:22-31), trying to discern whether God's will for us is good, whether it can be trusted. I went back and reread that passage of Jacob's wrestling and was particularly fascinated by his audacity in demanding a blessing from God. In response to that demand, God blesses him and changes Jacob's name to Israel.

I love thinking about God changing his name. I guess it's a familiar concept to me, because Joshua and I changed Salem's name. We gave her a new name-- a name meaning peace. She retains her old, beautiful name as a middle name (one that we still love). Still, there's something almost prophetic in the naming of a child-something very powerful in calling that child by a name with a meaning so significant. In addition to her first name, she bears the last name of her father. She belongs to him, to us in an inseparable, identity shaping sort of way.

Sometimes in the midst of the struggle, I forget that we are not alone in the wrestling match. In the day to day business, I can actually walk around not feeling God's presence-- not even recognizing that in my control and my doubt and my failure to cry out to God that internally I am wrestling with the God of the universe. A God who (astoundingly) loves me. Too much of the day I spend trying to make every detail as efficient as possible and in far too few moments of the day I acknowledge God in worship. I long to move past my wrestling to sincere worship in awe of a God who is no stranger to sorrow. In awe of a God who heals and whose power is beyond my wildest comprehension. In awe of a God who would enable me to wrestle with Him through heartache. In awe of the God who would be willing to sacrifice His son for our redemption. Even as they wrestled, it seems that Jacob grew in his knowledge of a mighty God and of his place before Him, "Jacob called the place Peniel, saying, "It is because I saw God face to face, and yet my life was spared."

We're continuing to wrestle in our own ways. We have a different sort of thorn in our side this week. I pray that as we walk the next few days of uncertainty that God's power might be made perfect in our weakness.

As you might already know, we've been waiting to hear back from our ATL surgeons regarding Salem's latest MRI on Oct 30. The radiology report from that MRI indicated there was postsurgical fluid pooling in the front of her skull (between the skull and the dura). After having trouble contacting our surgeons, we decided to Fedex a copy of the mri and radiology reports to our lead surgeon with a letter stating our concerns. After a week of having the films in their office, they finally had a chance to review them and called me on Friday at 4 pm to say they wanted to see Salem at the first available appointment. They're concerned about the fluid, but I don't really know what that means (whether they will want to surgically drain the fluid or monitor it with regular scans or what). Since their office only left me a message, it's been hard to assess the urgency of the situation. The only impression of urgency I have is that they asked me to come up as soon as possible, and when I called the office to schedule an appointment, the scheduler said, "Oh yes. The surgical nurse told me to get you in right away. Can you come Tuesday?"

I'm scared (sort of) and tired, and I had hoped that Salem would not have to face this kind of ordeal again. And maybe she won't. I just don't know. I hesitate even to write because I don't want to be the girl who cried wolf...especially if they tell us Salem is fine and send us back home. Still, I've decided to send this because I know that so many of you who read this are people of prayer.

Monday, November 12, 2007

Click the picture below to watch a fun video of Salem cracking herself up today.

Miracle and Shadow
Tuesday, November 06, 2007

For the past several days it has felt like we have been living in a time of miracles. And maybe we are. Every day Salem is crawling better and better. To see her lurch up onto her knees and propel herself forward one hand, one knee, one foot at a time is to watch a miracle happen…every time. When I say it is a gift, it sounds cliché. I don’t know exactly how to describe it. I know that we are taking great delight in this season, that we are laughing a lot, that our hearts are full to bursting with gratefulness. In many ways we wondered if this day would ever come and had begun to doubt, so watching Salem do something we had surrendered her entitlement to or our expectation of has multiplied our joy (like the man out of Luke 7 who loves more with the greater debt forgiven). Salem has a greater debt—a longer haul, so her victories taste even sweeter.

Some days I feel like Sarah receiving word that she would conceive in her old age after many years of barrenness. When she overhead that news she laughed in disbelief. After journeying as a family through a barren landscape with little developmental promise, we have grown almost accustomed to doubt. Even now as Salem crosses the floor on her hands and knees we laugh almost disbelievingly. But mostly we laugh with delight and gratefulness.

This new blessing has brought more sounds into my day. Sounds of music playing as she crosses the room from one toy to another, the sound of laughter as she pulls up the weak board in the kitchen and hears it fall to the floor, even the sound of monitors buzzing as she figures out how to switch the power strip on and off. But one of the most precious sounds of my day is the sound Salem’s sweet hands make against the wood floor as they slap down one after the other until she’s across the house. On Friday I was on the phone in the office when I heard the sound of water splashing in the kitchen only to discover to my great delight (and slight terror) that Salem was freely splashing around in Jezebel’s water bowl. Self-contained to the office no more! She’s free and loving it! And so are we.

Somehow in our familial delight we have almost forgotten to worry (too much). It feels at least for a time as if the burden/the anxiety has been lifted and we are free along with Salem to explore and discover new ways to delight in the precious life we’ve been given. Of course the worry lurks behind us like a shadow out of one of Flannery O’Connor’s short stories. The “shadow was now behind him and now before him and now and then broken up by other people’s shadows, but when it was by itself, stretching behind him, it was a thin nervous shadow walking backwards.” (from the first paragraph of O’Connor’s “The Peeler”). Our shadow (the unknown future that stretches out before us) is still lurking, jumping from place to place, distracted when it merges with other people’s shadows but always somewhere bound to us. At least for now, the Sun is high over our heads and the shadow is below our feet where it belongs.

To delight with us in the sound of Salem’s hands on the floor, click the picture below.

P.S. Her thyroid is normal! Still waiting to hear from the surgeons about the fluid build up under her skull.

Trick or Treat? Or both?
Thursday, October 31, 2007

Here's the scoop, as much as I understand it.

The brain ventricles look comparable to May. The radiologist still considers it a borderline case. Good news!

Unclear news? Some of Salem's blood levels are elevated (one in particular) which might suggest some thyroid issues. Our geneticist told us last week that thyroid abnormalities are sometimes linked with craniosynostosis and even developmental delay. He noticed her delayed teeth expulsion (she has only 3 at nearly 16 months) and said that could also accompany thyroid issues, as could constipation and dry skin. Seriously, what baby doesn't have the last 2 symptoms? Still, it's enough to make us wonder, so we have an appointment with a pediatric endocrinologist on Monday to discuss her history. I think (if confirmed), thyroid issues could be pretty easily treated.

More unclear news? There's fluid building between her dura and her skull. I have no idea how to interpret that, so we have calls into our doctors. We're just waiting for them to call us back to find out if that's normal or not.

Swallowing is a gift...
(if only I remembered that more!)
Wednesday, October 30, 2007

It feels really good to have today behind us. As some may already know, we had an appointment a few weeks ago that indicated Salem’s developmental prognosis wasn’t great (see the October 12 post below). Simultaneously, we were told that based on a recent CT, the ventricles of Salem's brain looked enlarged. She had a borderline case of ventriculomegaly back in May with our initial MRI, but this time it looked more clear cut (verification of this might mean a shunt surgery and potential for further developmental delay). A second opinion cast some doubt on the initial assessment, but the MRI would give us the best look. We await results tomorrow or the next day. At least today is behind us.

I will call the hospital in the morning to see if the radiology report is ready. If it is, we’ll have the report in hand as soon as medical records will release it to us. After reviewing the initial report and consulting a surgeon here (mid-November?), we should have a much better idea about whether Salem will require a shunt.

In the mean time, it has been a really good week with Salem. She’s loving having a little more independence, and it is so much fun to celebrate that. For some reason, it’s been easier lately to enjoy her delightful self day to day. I haven’t been so plagued with thoughts of the future and all the what-ifs that come with that. So much of that I know I owe to the prayers of so many who pray for God’s mercy in Salem’s life and for sufficient grace for us as we face the unknown. I also think part of that ease has come with letting our Gymboree membership expire for a little while. Not having to deal with the comparisons twice a week gives me the freedom not to feel on my guard all the time—not to have to defend my daughter’s development or intelligence—even to myself.

Why can that be so hard? Is it because I feel like Salem’s lack of developmental acumen is some sort of accusation that I am not a good mother? Am I ashamed of myself for not offering her a better learning environment? Am I grieving the “what ifs” of her future when I see other kids who have reached developmental milestones more quickly? Could it be that I am jealous of other moms who don’t have to worry whether their children will be able to feed themselves? Or am I angry that I hear moms complaining about their children’s constant chattiness driving them crazy when I wonder if Salem will be able to speak our names? I guess I’m ashamed to admit it’s a combination of all of these. And most of these questions lead me to self-doubt.

The truth is that in a highly competitive world where the most popular shows (some of which I watch) deal with who can sing the best, lose the most weight, survive on the island, cut a rug on the dance floor, or look like a highschool cheerleader, there’s a big piece of me who still wants to make an “A” on my report card. And at times I lose sight of what an incredible baby Salem is when I am caught up with the questions of “Am I doing enough? Would my efforts make the grade? Will Salem’s?” And the truth is, I KNOW I would be one of those moms who complained about the extra effort it required of me were Salem developing on time, crawling all over the place and getting into loads of trouble (soon enough) and chatting my ear off. I would be stuck not knowing how good I have it, were it not for the gift of some of the unique challenges that Salem’s life offers us all. I know that even in our situation I take things for granted every day—even things as obviously blessed as Salem's ability to crawl and not be wheelchair bound, her ability to laugh, to focus her eyes, to swallow. The list goes on and on. Some days I walk around knowing as I know my own name what a special blessing Salem is in our lives—how much we love her today and always will no matter what her future holds. Today is one of those, and I am grateful.

To see Salem having some fun bouncing on Rody tonight, click the picture below. Note the Congrats balloon that our wonderful friends brought us to celebrate Salem's crawling 2 Fridays ago. Thanks, Swainers! :-)

Laughter....
Thursday, October 25th, 2007

Here are a couple of videos I wanted to share that made me smile tonight.

Click here for some more of Salem's crawling progress.

Click here for Josh making Say laugh when he slides Big style across the floor in his sock feet.

One of those days....
Wednesday, October 24th, 2007

Some days it is easier just to go to sleep. After our doctor’s appointment this morning, that’s all I really wanted to do. Forget the laundry that’s been in the dryer for going on 4 days now. Forget the dishes in the sink or the house that needs some TLC (ok…not just some. It needs a lot). After we got home and Salem went down for a nap, I just wanted to go back to bed. So I did.

I’m not sure it made the waking up any easier. It’s not unbearable news. Just painful. More of the same. More sad prognosis reports that leave us wondering what sorts of things will be possible for Salem to accomplish. More of that chronic, nagging sort of pain that makes me wonder if it will ever feel like we can celebrate (or just rest) for any serious length of time. On the drive home I started thinking about how this journey has made me readjust my expectations. It’s strange how I’ve begun to adapt to these appointments. I remember a few months ago when I would want to question the doctor with whether Salem would be able to attend school, to have a career, to marry—to find a man who would love her as much as her daddy loves me, to become a mommy. I don’t ask those questions anymore. Or even expect them, really. It’s not that I don’t hope. I still hope for those sorts of things every day, but I’ve had to surrender my desperate clinging to those visions. Some of that might be a good thing. Who knows if any of those hopes would have been her own? She might have very different dreams for herself, but still when I allow myself to think about them as though they were right out there to touch and to hold, the tears fill my eyes.

We’re trying to do the hard work of focusing on the immediate—what things might be within Salem’s close grasp. With this kind of approach, the little victories take on whole new meaning. It’s still a struggle, and I will confess that as soon as Salem started crawling, I wanted her to start babbling and trying to walk and to bang 2 objects together and any number of other things. I wish it did not require effort for me to force myself back into the present, to be grateful for this huge victory in her life.

There is a family in town that I really admire. They are parents of 2 sons, and one of her children is autistic. He’s 18 now, so they have lived with their grief (and their joy) for many years. The mother describes it as a chronic sort of ache that bubbles just below the surface of her life. She said that some days she can walk into Publix and see a cashier who is her son’s age, and it will hit her that he probably drove himself to work that day. She can’t help but think of her own son and grieve.

I write this and even as I do, I start to lecture myself for not being more grateful. Grateful that Salem is alive and that nothing threatens her physical health. Grateful that she is making developmental strides. Grateful that I get to stay home with her and that we have so many amazing therapists in her life to help. Grateful to have a husband who loves me so much and who adores Salem with every fiber of his being. Grateful to have family and friends that love us so faithfully and pray for Salem so often. Certainly, there are many things for which I am grateful. I'm working on being more consistent with my gratitude.

Click here for a new video link of Salem making more crawling progress....

Life comes back....
Friday, October 19, 2007

When I was in college I bought a poster at one of those sidewalk poster sales. It’s a black and white picture of a little girl playing in the rain. She’s probably two years old—still a little awkward on her feet, and she’s wearing bulky white tennis shoes. She’s holding her arms tight to her body even as she’s lifting her hands palm up to catch the rain. The quote underneath her says, “Then, when it seems like we will never smile again, life comes back.”

Today we are smiling. Today we feel like life has returned to our house.

Today Salem began to crawl! It’s such a victory for her…for us all. I feel like it’s a wonderful dream. I’ve had so many dreams that Salem is crawling or walking or running. So many times I wake up and am sad to see that vision fade. This time I don’t have to wake up. I might have to clean up…(a lot), but I don’t have to wake up. It’s amazing. The real thing is just as wonderful as the dream, and I feel just as exhilarated.

So many times mothers have asked me how old Salem is and I have answered them. Sometimes after that question, I start to feel strangely exposed. I start to search the woman's eyes to dare her to assess Salem's development in relation to her age, in relation to her own child. It's a split second thing, and it might sound like I'm being too sensitive (and at times I am sure that I am), but I've seen it many times. It's an internal sort of pride that flushes over the questioner's face--a brief recognition that their child can--that their child is ahead--that mine is "behind." One time a woman asked me “Is she walking yet? No? Well, she’s crawling then? No? Well, she must be pulling up?” Um…no. After that type of awkward exchange (of which there have been many), the mom usually nervously responds by saying something like, “You’re really lucky. I wish mine weren’t crawling yet. Enjoy it while you can.” Another time a woman asked me that series of questions and then replied, "Huh. I guess not all kids can be like my son and walk at 9.5 months."

In those moments I just want to scream and say something mean, but instead I inwardly resolve never to complain about my child’s development requiring something of me--and to struggle against the desire to wear her developmental milestones as badges of my own. Her development is neither something for me to glory in or to complain about. It is a gift, and it is a blessing to us. Exhausting as it may be chasing around a crawling child and cleaning up everything in her wake, I have longed for this day for months. Never have I been so excited to see her little legs moving…and never have they moved with such intention.

To see a video of Salem playing in her flower fairy costume, click the picture below.

To see a video of Salem playing with her pumpkin, click the picture below.

To see a video of Salem CRAWLING, click the picture below.

Famiversary
Sunday, October 14, 2007

It’s hard to believe that one year ago on this date we were staring into our daughter’s eyes for the very first time. My friend Erin recently asked me to describe our first moments with Salem. I remember trying to force myself to eat breakfast that morning, although I could hardly stand waiting another minute. We were driven to the orphanage and followed the director’s wife up to Salem’s room. Before entering the room, we were told to remove our shoes. It is a sign of respect to remove your shoes before entering a room/house in Ethiopia (much like Sudan, Uganda, or many Asian countries). So there we were, shoeless, standing on the threshold of her room. We were on sacred ground---meeting Salem for the first time …like Moses approaching the burning bush. It felt that momentous to us.

Sometimes the journey of adoption is a little different. In our case we prepared for Salem for months prior to our arrival in Ethiopia. During those months, there were times when she felt almost hypothetical. Of course we knew Salem was real. We prayed for her and for her first parents. We longed for her to be home with us, and at times agonized that we were not yet with her. But not knowing her laugh or her eyes or her tiny hands or her button nose or even whether she had been conceived yet made her feel almost illusory to us at times—as if we were loving an imaginary person.

The road to bringing a child home through adoption can feel so uncertain—as though at any moment the wind might change direction, and your dream of a child might vanish as a desert mirage. The love we had for Salem prior to meeting her was no illusion, yet it somehow felt divided from us too, almost like harvesting the grain for the storehouses but not yet having the benefit of the feast. That October morning as we bent over Salem’s crib to hold her for the first time, I felt all of that prepared love materialize. It was as if the film that had been protecting my heart from all the possible disruptions had instantly vanished. I knew that all the love I had for this tiny baby was genuine, had been stored up for her, and was now pouring out, a bountiful harvest of love. We belonged together.

I recently overheard a mother say that she knew her child belonged to her because she looked just like her. I must confess that at first there was a sort of sting in that line—in knowing that Josh and I could not look more like Salem. I hasten to add that from my perspective at least, our children don’t belong to us because they resemble us (in look or manner). They belong to us, because God entrusts them to us (and us to them) for a time. No other child could belong with us more. She was chosen for us, and we for her. Simply put, Salem belongs to us because we love her.

Happy 1st Famiversary, Salem. We love you so.

P.S. Thanks, Carrie, for the fun word. Famiversary is an excellent term for our annual celebration of the first day we were united as a family. :-)

Saturday, October 14, 2006-- our first day with Salem Yimegnushal.

Friday, October 12, 2007
Pictures

Wednesday, October 10, 2007
Kinship in the waiting….

I know some amazing people (my mother for one) who can be in excruciating pain and continue to have genuine, almost heightened compassion for the sufferings of those around them.

I am not one of these people. Yet.

I long to be, but for now when we face scary appointments and prognoses that are alarming, I cannot help but think of Salem and almost exclusively of her and of what we can do as parents to try to make it better. I become consumed with how we can alleviate her suffering to come, to mitigate the difficulties of the diagnoses in whatever ways possible. And to be honest, I think about my own pain. A lot.

Sometimes the waiting rooms in the doctors’ offices are worse than the visit with the doctor. It’s not so much the anticipation of the visit—wondering what the doctor will say. Usually, I anticipate positive news, in fact. The main reason the waiting rooms are so hard is because there is so much agony in those rooms. I look around the room and see the mothers with their children and can’t help but grieve with them the loss of hope—the day to day pain of it all. It’s a strange sort of kinship that mothers find in those rooms—even brief eye to eye glances can be weighted with the so much meaning, sadness, empathy, exhaustion. It rarely requires conversation—it’s a silent sort of language of the eyes. It’s an immediate bond, an offer for help, a cry for rest, a longing for understanding, and it is excruciating at times.

I can’t help but sit there among those families and wonder if our lives will resemble theirs in a few years. I can’t help but ask myself whether a new mom will be looking at me with the same uncertain sorrow in 5 years wondering if her life will look like mine. Every visit to the neurologists or surgeons brings “that patient.” It’s 5 year old Giovanni who rocks back and forth violently, holding a cookie in his hand for over an hour and never knowing it, never able to respond to his mother’s caresses or to quiet under her touch. It’s 7 year old Nathaniel whose rage escalates until he’s beating his mother and screaming at the top of his lungs. Last week it was a little girl—one of the most beautiful little girls I’ve ever seen. Her name was something like Timma. 11 years old with a gorgeous smile, hair braided perfectly, beautiful eyes. She had a model’s face, high cheekbones, piercing green eyes, beautiful dark skin, and yet she was profoundly disabled, combative and difficult to control. She spoke in grunts mostly and didn’t understand where she was or why she was there. She was broken. I say broken and yet even as I write that, the mother in me rebels against that term and wonders whether people will look at Salem and apply the same term to her. I want to scream, “NO! She’s whole!” and yet I know that there is an undeniable brokenness about these children’s lives and limits.

To look into these mothers’ eyes is to suffer. And to suffer is to long for healing. It makes me think of the verse out of Psalm 147 “He heals the brokenhearted and binds up their wounds.”

Wednesday, October 3rd was a really difficult day. Only a week ago and yet part of me is still reeling from what our neurologist told us. After reviewing the CT we had in ATL, our neurologist returned to the room and said that while the post-operative bone films looked good on the CT, Salem’s ventricles are enlarged. We knew this was a possibility. In May when she had her MRI, she had a borderline case of ventriculomegaly—the enlargement of the ventricular system of the brain, sometimes caused by hydrocephalus (water on the brain), in which CSF builds up and puts pressure on the brain. This sometimes requires a brain shunt to drain off the excess fluid. Once borderline, now Salem’s case is clear cut. Nothing borderline about it he said. He ordered a follow-up MRI and said that after that we would discuss our options. Worst of all, he said very soberly that he thought he would be remiss if he didn’t tell me that it was going to be a long road for Salem. I asked him what he meant by that, and he told me that we needed to be making financial arrangements for her long term care. I asked him if this meant that Salem would not be mainstreamed in school, and he said, “No. Not at first.” I asked him if this meant that she would not be able to live independently, and he said, “That’s too far into the future to predict. It’s possible, but she’ll always need assistance.” I asked him whether she would talk, and he said, “Let me put it this way. I think she’ll talk and crawl and walk, but the skills she acquires will come late and be limited.”

I’m typing these words with a rote sort of stoicism and feeling detached from it all as I type. And yet we have grieved with intensity at times over the last few days. We feel like it’s the death of a dream for us—and yet it’s not certain death. More like a pronouncement of chronic pain or uncertainty. After I came home from the appointment and told Josh about it, we sat there and cried. I don’t remember much about what we said. I do remember Josh saying something akin to this journey having being a fool’s hope. I remember thinking of Gandalf’s line in the Lord of the Rings when he said, “Hope? There never was much hope. Just a fool’s hope.” And even as he said that in the book, the battle was waging on—the errand continued—as does our own. As I say, it’s not a certain diagnosis. The doctors have been wrong before about Salem (like when one told us he thought she had CP and we had to wait 6 weeks for an MRI to say she didn’t have it). Maybe this one is wrong now. I don’t know.

“Now faith is being sure of what we hope for and certain of what we do not see.” Hebrews 11:1

I do know this. Never before have the doctors described Salem’s path so ominously. Right now we face a difficult prognosis and yet we continue to hope. Sometimes I hope broadly, generically and sometimes I hope very specifically. And sometimes I cry. There are times when I look back on our journey and feel like it is all for naught, and there are times when I cannot deny God’s hand in it all. All of it. From start to finish. He has rescued Salem from the pit of death, and we know that was not for naught. There are moments of fatigue where I want to go to sleep. There are flashes of intensity when nothing could distract me from working the therapy regimen. And then there are the moments of balance. Those moments are the most pleasant. When I take a few deep breaths and enjoy Salem—her laugh, her scream, her sweet curls, her attempts at new things, just her. She is delightful. I love being her mother.

I think grief is a scarily consuming thing. It is so oppressive that we have to find outlets to escape. To laugh, to think about other things, other people, to connect with the world. Last Wednesday night, Josh and I took the time to watch the first episode of the BBC’s Middlemarch. I had just finished reading it, so he offered to watch it with me. I think he wanted to meet the characters that I had been talking about for 2 weeks. Even though the film was terrible quality, I liked seeing the different characters portrayed, to see their frailty and pride and to see my own parallel theirs. Dorothea’s almost monastic stoicism, her sometimes blind, mercurial determination. The frivolous Mr. Brooke. And the vain Rosamand. Only a few hours after Salem’s appointment, we were lost in this episode and having fun together. It seems impossible and somehow selfish to do, but also essential. A deliberate choice to keep walking.

This weekend Salem and I spent with my friends from college—there are 8 of us, and we meet 1 weekend each year. For 4 of the girls, it was the first chance they have had to meet Salem, and I’m so glad we went. There’s nothing like laughing with your friends at 3:30 in the morning over a game of Loaded Questions—even when it does wake the baby.

It’s these little moments, and most of all the moments with Salem when I know that we will survive. That God is faithful and will remain so. When I refuse to allow myself to ponder the “what ifs” and enjoy the already, I can laugh at the days to come.

I will try to post some new pics of Salem soon… thank you for reading this far.

Thursday, September 20, 2007
Prayers for the Farley family

Please continue to pray for the Farley family. To view their site, please click here. Sometimes suffering feels so overwhelming, and theirs is heavy on our hearts even as we prayerfully rejoice in the miracle of baby Copeland's life.

I'm attaching a couple more videos of Salem.

This one is her having fun with the balloon that Leslie and Carter gave her. Ladybugs were Morgan's favorite. To view the video, please click here.

This second one is of Salem feeding herself some peaches today with my fork. She was having so much fun! To view this video, please click here.

Tuesday, September 18, 2007

This day could not have gone much better for us.  We arrived in Atlanta around noon and went straight to the Children's Hospital, where our doctors here had ordered a CT scan to be done immediately (see our previous post for why).  Salem cooperated wonderfully, and therefore she didn't need any sedation - yay! And, the hospital's CT machine here is incredible - it took about 1 minute to do the whole scan of her head! We then met with our neurosurgeon, Dr. Hudgins.  He said that though some of the shaping that is occuring with Salem's cranium post-operatively is more extreme than they (the doctor team) would like, she nonetheless is within the normal range and that there is no need for alarm - no improper bone shifting and no surgery necessary! Praise God!  Moreover, he was very pleased with the way Salem's brain is filling up the new space in her skull created through the surgery.  Next, we met with the cranio-facial surgeon.  He was even more positive than our neurosurgeon, and felt that Salem's cranium is taking a relatively normal course during this stage of post-op.  In light of what our neurologist told us yesterday (that Salem's bone plates in her skull had shifted and therefore her skull was in the wrong shape), we hardly hoped that today could bring such wonderfully different news.  Thank you all so much for continuing on this journey with us, lifting us up in prayer and caring for Salem.  Praise God from who all blessings flow!  

Monday, September 17, 2007 ~8:00 pm
Another round?

Today has been complicated. I returned with Salem to our neurologist to have him examine her in all her post-operative glory, and while they were encouraged by her growth, the doctor noticed right away that something wasn't quite right with her. The long and short of it is that our doctor believes that the bone plate that surgeons inserted during Salem's surgery has shifted out of place (up and to the left, causing a sharp indenture on the lower right side and a large protrusion on the upper left side). We noticed a potential problem with this the Saturday they removed her dressings, and we asked several times about it. We were told that it looked like it might be swelling and that it might subside over the next few weeks. Unfortunately, it has not. We were also told to expect a few bumps to appear over the next few weeks, but this seemed out of the ordinary. Still, I was trying not to panic and elected to wait until our neurologist weighed in on the issue. Now I am seriously asking myself why I went to the trouble to avoid being histrionic, when in fact my gut level suspicion might have been right all along.

All of this to say, we're hopping the first pony to ATL in the morning to see at least 1 if not both of our surgeons. We have been waiting on a return call from our surgeons since 4:45 pm EST, but still no word.

Though we really don't know what to expect, I fear the surgeons will not be happy with this potential shift of Salem's forehead bone/plate, and I think the only solution will be the dreaded surgical one.

Now all there is to do is pack.

And pray.

Thursday, September 13, 2007 ~6:00 pm
A year of hope

One year ago today we accepted the referral of our beautiful baby girl. She was named Yimegnushal, meaning "they are longing for you." And we were.

Two weeks ago today Salem was recovering from surgery, fighting the effects of anesthesia, and Josh and I were preparing for a long night ahead. We had already survived the long wait to and through the surgery. We were exhausted before we even began. Even Salem was exhausted. Minutes before they wheeled her away from us on the big stretcher, she fell asleep on her own....her tiny form now wearing unisex cartoonish alien hospital pjs. We wandered aimlessly to where our family was waiting in the lounge...not really sure where to go after our sweet charge had been taken to surgery. Whenever Joshua would shut his eyes in the waiting room, he would say that he felt like the disciples falling asleep while praying in Gethsemane. I couldn't even walk out into the waiting room...I wanted to stay in the family lounge--closest to the doors that divided me from the operating room. In fact, I couldn't even pray much. I was depending almost entirely on the prayers of other people.

My solace was working puzzles with Jenn and Erika and Erin and laughing about Rhode Island not being the capital of New Jersey. The minutes stretched by--then an hour. We received a phonecall from the nurse saying that Salem's labwork had been successfully drawn. I remember wondering at one point if they had removed Salem's forehead yet. Then I forced myself back into the puzzle with the girls. Soon enough the surgeon came out to tell us that his part was finished--that he was glad we had done the surgery when we did, that there was a lot of tightness in her forehead and that he was cautiously optimistic about developmental benefit. Then the tears. Erin took some pictures of that moment. I'll post them sometime soon. I remember thinking in that moment that it was possible....for the first time in Salem's life my hope didn't feel hollow. I thought she might be able to lead a normal life, and that hope welled up inside of me, and all we could do was rejoice. It was almost as if our baby was being born to us all over again--as if she were taking her first deep breaths of expectation--only this time we were there to witness those breaths.

It still amazes me that Salem could recover so quickly from such a dramatic surgery. I was telling a friend of mine that I feel like I have whiplash. We spent months preparing for this surgery and then it was over. Almost as soon as it was over, we were on our way home, and Salem is her bright self again...keeping us laughing as always. Almost like it never happened. It seems strange that in the course of a few days Salem could have endured so much and recovered so well. The surgery wasn't easy, but that part is over now.

There has been little time to reflect on the surgery, the trauma of it, the delight of its lack of complication, the ups and downs of it all. There has been little time to step back and view it from this distance, to see God's faithful hand in it all. I'm not sure how to categorize it all really. The stakes were really high. From our perspective, the only shot that Salem had at developing normally rested on the success of this surgery--and even that was/is no guarantee. The months of preparation felt like heading to our doom...and yet also to Salem's only hope.

When I think about that hope, I realize that ever since we first met Salem, we've been waiting expectantly--waiting with hope. We knew that Salem's life would require struggle and some measure of suffering....the circumstances of her birth alone told us that there would always be heavy questions with which she would have to wrestle. These questions we understood would be complicated by the fact that we are a multi-racial family. Within a couple of weeks of receiving our first and only picture of Salem prior to meeting her, we realized that her journey would be even more difficult than we originally anticipated and our hope rested on bringing her home as quickly as possible. While still in Ethiopia she began fighting infection...one after another....and we were requesting and then insisting that we be allowed to travel to her side early. Within 1 week of our arrival, Salem was fighting for her life, and we were watching helplessly. Josh does better at that than I do. He turns to prayer while I start to panic. One day we were sure she was dying...only hours after the loss of one of the precious orphanage babies, Salem began to develop very similar symptoms. In the hours and days that followed, I began to despair even of my life. I remember walking up the street next to a gutter filled with flowing raw sewage convinced that God was choosing to let Salem die. We were watching the life draining from her with every diaper change, and I did not know as a mother how I would survive the loss of my child. I remember for a split second pondering how long it would take me to die if I dove into that gutter--what sort of infection would finally claim me. But that was not my end, even as it was not Salem's. Within a few days of that despair, Joshua had to return home. In the terror of being alone in Addis, I heard the whisper of God assuring me that He would not let her die there--that He had a plan for Salem's life. It was the briefest of whispers, but it gave me hope and the assurance that I was not alone--and that His hand was with Salem. And now this year draws to a close--it has been just over a year since we received that first tiny picture of our baby girl, since we first dared to hope.

At some point during the hospital week in Atlanta, I remember updating the website and being afraid of how indulgent it felt...and yet I knew so many people were reading it wondering how they could pray specifically. So I kept writing. Honestly I didn't know that God would answer prayer so specifically. I knew, of course, intellectually that He could. I just didn't know he would. But the more we requested, the more He provided. It has been so humbling to see how much favor He has shown us in these past 2 weeks--in this past year.

Still, updating this site sometimes makes me feel like an exhibitionist...and I'm tempted to delete it all. So far, I haven't, because I know that Salem's life is a testimony of God's faithfulness--to His saving grace.

To view a video of Salem playing the drums, click here.

To view a video of Salem playing with her balloon, click here.

Thursday, September 5, 2007
Home

I think the pictures say it all here...we are home. It is an amazing feeling. I cried yesterday when we brought Salem inside the house. It just felt like such an enormous weight lifted off our shoulders--there had been so much burden leading up to the surgery. Coming home feels like it never happened--like we imagined it all. Except I know we didn't. And I know Salem still has a long road ahead.

Isn't she looking amazing?! I so wish I could post a picture from Sunday (when the swelling was at its worst) alongside the picture from today, and I am sorely tempted to post them both. I want everyone to see what a dramatic difference it is...how far she's come in just a few days. But the mother in me knows she would rather not have her difficult pictures posted online, so I yield to that instinct and say thank you yet again for your amazing prayers.

Click this Video of Salem having a ball at home on her favorite toy, Rody

We are resuming therapy with Ashley today. I still can't believe it! We are so excited! Maybe we will begin to see some developmental benefits over the next few weeks and months. If we do, we know it will be God's good hand who has delivered this to us. If not, we remain so thankful for Salem's health and for the many things that she enjoys so much.

Tuesday, September 4, 2007
Tribute to Morgan

We're hanging out here in ATL for another day or so. Salem is doing well...she's still occassionally running fever, but so far we're not worried. She wants to spend her day playing. I spend my day grateful that she is doing so well and at the same time remembering those whose journey has not been as easy as ours.

The beautiful Morgan Reynolds

Being at Scottish Rite in the very hospital...the very floor where Morgan Reynolds so often was made her journey even more tangible to me. I will never know her courage, but I have a smaller taste of it after watching Salem battle so fiercely. To have a better idea of what Leslie and Bernard battled....what sweet Carter and Poppy and PJ battled is heartbreaking. Whenever we would mention Morgan's name in the hospital to our nurses or to Dr. Hudgins, their faces would light up...and then tear up. it was obvious that she was loved by all, which comes as no surprise of course! She was such a brave little girl--so beautiful. Looking so much like Leslie with those beautiful, piercing eyes. We loved Morgan...mostly from a distance, but we did have one blessed day with her that I will carry with me for the rest of my days. She has been our inspiration through our entire journey. When we long for the sadness of Morgan's life to come untrue (like Samwise from the Lord of the Rings), we especially long for Morgan and wish that we could see her with that giant lollipop that Leslie dreamed about. We know we will someday, but it still hurts. We love and respect the Reynolds family so much and are so grateful for thier love in our lives.

We also daily remember sweet Copeland in our prayers and Boothe and Conor and Sellers. As Copeland's birthday approaches, we pray ever more fervently. Please join us in praying for this sweet baby--that her time here might be prolonged- that miraculously she might be healed. That whatever time she has is peaceful and precious with her amazing family.

Madison Winn is still in the hospital, so we continue praying for her in her long recovery. And for sweet Natalie McCall around the corner from Madison.

We are so grateful to the Platts for their many posts requesting prayer for us.  Salem sends her love to sweet Sydney!

Sunday night 10:25 pm
Hotel Hallelujah!

Hallelujah! Salem's temperature never went up….it was either a false reading or it went down again. Salem continued to feed very well, so they have released her to our care!

It now occurs to me that this is the 3rd time Salem has been released from hospital into our care. The first two times were in Ethiopia. The first time she was released to us, I cried the whole way to the place where we were staying. It was a short drive in a car without seatbelts or carseats. That part felt somewhat freeing, but bringing her to the house where we were, I was terrified. I didn't know whether I would be a good mom, whether I had what it took to care for this precious gift, and I think part of me knew that her battles were not over. Within a few hours, she was as sick as she has ever been. One of my dear friends who arrived today asked me if this was the longest week of my life. I can honestly say that so far it really hasn't been. The longest week was watching our baby fail before our eyes—when we thought she would not make it—when the life was draining from her and there was little to nothing we could do about it. Those were the darkest days. We were in a culture that was not our own with medical supplies that were limited and we had to trust that God knew what He was doing.

The second time Salem was released from the Ethiopian hospital, I had assurance that she would heal--that despite the fevers and the sickness to come, she would survive. I was confident.

This week, we have had the support of friends and family, and that has made all the difference. Even in the most difficult hours of this week, there has been some laughter. Laughter is so healing. Puppet shows at Salem's bedside while she slept, debating the capital of Maryland, and so many more! Tonight as we left the hospital, I could not contain my joy---my jubilation at watching her precious father hold her in his strong arms--even as my precious father videotaped the whole thing. I know we rest in Arms that carry us always, and I rest in those tonight.

There is not a single prayer that we have prayed, that we have asked others to pray that has not been answered with abundance in this week. I have never seen such grace, such specific prayer answered so readily---every detail taken care of, every need met, every hope met with more hope. We will sleep with great joy tonight.

A quick note on Salem's sweet smile...Josh pulled out his guitar tonight to play for Salem, and she loved it…she smiled so big—I still can't believe she can smile with all of the swelling she has, but she looks adorable when she does. We were able to bathe her for the first time, and as I type, she is behind me in her crib, not wanting to sleep because she wants to play. Maybe tonight we can all rest as a family together.

Sunday afternoon 1:01 pm

Salem has begun to run a fever--slight now 100 F, but she's on a lot of fever reducers, so this indicates some sort of infection. I am almost sure they will keep her in the hospital. She is still not drinking/eating much (maybe 2 oz of fluid today).

Sunday, September 2, 2007 ~ 11:46 am
There's no place like home….

And soon enough we'll be heading there. Doctors are considering sending Salem home today, though in many ways we would feel more comfortable if she could have one more solid night in the hospital. She rested very well last night but still has some nausea and cannot hold much down. Until about an hour ago, she was receiving iv fluids still. They have stopped her fluids but have left her iv in for the next little while to see if she will be able to come home to the hotel with us. If she still cannot hold anything down, we will keep her in the hospital until tomorrow. Her eyes are still swollen shut, so that's frustrating to her, but she is so resilient. She hears everything!! She is enjoying playing with her therapy beads and a couple of her favorite toys that jingle, and as you can see in the pictures below, she has enjoyed the company of a few new soft toys!

I need to put a long lost plug in here for Scottish Rite. They have been amazing...from start to finish. Nurses Amy and Willie have cared for Salem as their very own and have been incredible supports to her parents as well. Unbelievable compassion and attentiveness....we could not say enough about them. Thank you so much, Scottish Rite...and particularly Amy and Willie.

This is the first chance I've had to post any pictures, so I'll just put them all below---from Thursday morning at the bottom to last night at the top. To protect Salem's privacy, we will not post a picture of her post-op right now. She is as beautiful as ever, of course, but if she's anything like her mother she won't want her picture posted for the world to see until she gets a good hair wash.

From left to right (top row): Jeremy (with Monkey), Corey (with Simba), Megan (with Ella), Nancy 9with the cow/giraffe Al), Erin (with fish) 
Bottom row: Erika (with Charlie the alligator and elephant), Keely (with PJ), Erin (with the twins Symone and Beyonce), Josh (with Pinky and Dinky)

With Dr. Burstein (Salem's cranio-facial surgeon). He seems very pleased with the result.

Megan and Nancy with Dr. Hudgins, Salem's Neurosurgeon. He has been so amazing...so kind and skilled. Dr. Hudgins operated on Megan 15 years ago...isn't she gorgeous?! It was so much fun to see this reunion. Megan and Erin have been so precious with Salem. You may have seen Dr. Hudgins before. He also operated on Baby Noor from Iraq.... to read more on Baby Noor's amazing journey and Dr. Hudgins' skill, click here and here.

PJ wanted to look like Salem. She needed a bandage on her head too.

Cary, Jenn, Corey, MiMi, Nancy, Erin, and Josh all trying to encourage Salem to take a bite of yogurt. They have been so precious with her....so hands on and gentle and quiet and calmng. Cheering her on all the way!

We could not believe we got to see Brandon and Cheryl just minutes after Salem came back to us. Sweet Charlie is growing bigger and will be happy to meet the world one fine Scottish December day. We cannot wait to meet him. Cheryl's cinnamon bread has carried us throughout the week. It's lasted us so long....like the fishes and loaves!!

Our precious pastor, Joe Creech came to see us while Salem was in recovery. I love Josh's bright smile--we had just received word that the surgery was a success!

Dr. Kim, Salem's anesthesiologist. He was so gentle with her and had a surgeon standing by for her in case she needed a central line. He gave us an update post-op and was so kind. Salem had only slept 2 hours the night before, so she was very sleepy that morning....She barely opened her eyes for Dr. Kim.

Salem--wondering why she's not wearing her PJs anymore.

6 am. Waiting for them to call us back for pre-op. Salem was surprised to be awake again when she had just fallen asleep, but she was such a good sport.

Saturday, September 1st, 2007
Improving SO MUCH

"The Lord is the stronghold of my life .Of whom shall I be afraid?....I am still confident of this. I will see the goodness of the Lord in the land of the living." Exerpts from Psalm 27

We are so blessed! Salem had a good night last night. She rested really well and began to take a couple of small bites of yogurt (her favorite, because she sees her daddy eating it all the time). She started drinking a couple of ml of water, which as the day progressed has turned into drinking water from her favorite sippy cup straw.  This afternoon they took the bandage off her head and even though she can't see, she's loved playing with some of her favorite toys—her beads, her rattle, PJ's hair (I took PJ's bandage off her head too), her multi-colored dog with the sweet chime inside (She LOVES it, Nancy V!). She cries occasionally and kicks her legs a lot and generally wants to get into the action. There is so much to share, but I don't want to be away from her any more to share it….for the first time in a 3 days I returned to the hospital to rest some this afternoon, so I'm ready to get back. Suffice it to say, we are so grateful to God for His healing hand and so amazed by our Salem's fighting spirit. She is such a champ!

The suffering of so many others on the hall humbles me. One sweet little girl had a neurological victory yesterday and now her front door proudly reads, "I had NO seizures yesterday!!!" She is 9, and she drew the sign in all sorts of beautiful colors. Other children are walking through some very dark valleys. Please pray for Natalie McCall and Madison, (6 and 15). Both girls have been diagnosed with difficult brain tumors in the past week. Little Natalie was diagnosed yesterday, and she is having some other complications that are very challenging. Her family is here loving her so well, but they have asked for your prayers, and I told them I would love to offer her name to you. Another baby on the hall is here by himself—he is so adorable but so scared being alone.

I know this is just 1 floor of 1 hospital and that there are countless others who suffer like these precious kids I've mentioned and even more across the world. I have a whole new respect for the Reynolds family (www.miracleformorgan.org) who have walked this road so long. Sweet Morgan is our hero, and Carter's visit to us yesterday was the highlight of our day. The Farleys are on my heart constantly.

Today our family rejoices in the prayers that have been offered and in seeing God's healing response. We love you.

Friday, August 31, 2007
Recovery update (with funky formatting from hospital computer), ~4:15 pm EST

As I type, Salem is sleeping peacefully. She had a very difficult night with a lot of pain, but today has been much better by comparison. She is making progress! She is not requiring as much pain medicine as before and is resting comfortably. We had a scary night last night when her pulse and respiratory rate jumped up without warning and started setting off all kinds of alarms. She was in a lot of pain, despite the incredibly attentive care of our wonderful night nurse, Amy and tech Elizabeth. They paged Dr. Hudgins, and he ordered some extra medicine to help her sleep. She still slept really fitfully and cried a lot. Josh would just stand over her for hours at a time holding her little legs down gently to keep her from kicking and thrashing (anything to protect those precious ivs in her feet).

She has more swelling today on her face/head, so she cannot open her eyes today. They anticipate the swelling will continue for the next couple of days and might begin to subside on Sunday…maybe she will be able to open one of her eyes then…or Monday. Despite the increased swelling, Salem has rested a lot. Our guess is that tonight might be more difficult again, since she has rested well today.

We feel so helpless not knowing how to comfort her. We’ve been reciting some of her favorite books from home “This is a baby. Babies have happy smiles. Daddies love their babies. Mommies love their babies too. Babies have tiny hands. Sometimes babies cry. Babies are messy eaters. Babies sleep a lot. Babies come in all shapes and sizes. Babies need lots love love.” We sing her her favorite songs, “Oh, the grand ole Duke of York…he had 10,000 men…he marched them up to the top of the hill and he marched them down again. And when you’re up, you’re UP. And when you’re down, you’re DOWN. And when you’re only half way up, you’re neither up nor down.” We tell her that Jezebel misses her at home and that we will take her to the park and to the swing when we get home. We try to dip her pacifier in water to wet her lips and gums, and she seems to like that sometimes. Mostly we just stand beside her and hold her little hands.

Two very important and wonderful things I failed to mention yesterday.

1. Thanks to Dr. Burstein’s P.A. Dina’s gentle reminder in the OR, they used dissolvable sutures for the surgery. This is wonderful since it means once Salem is stable, we can go home and not have to return for a follow-up visit until next month. As you might recall, they planned to use staples which would mean that Salem and I would have stayed here for another 10 days to have them removed, but now we won’t have to have anything removed! Thank you for praying so specifically about this!

2. We could not have made it here without the support of our family and friends.

Nancy D. has been an angel-with her quick eyes and diplomatic urging of the nurses for more medicine. She stayed with us all night in the room last night and didn’t get any sleep at all. Her precious girls arrive today, and we are so grateful for their willingness to give her up for these days with us.

My cousin Jennifer and her husband Cary have been wonderful…helping me strategize and keeping me laughing (Cary, you definitely liked Jenn before she was sure about you…and Jenn is sort of right…I am a goodie 2 shoes, but she’s more of one now than I am). They were the first to bring Salem a gift shop toy…a precious little alligator headrest, which she’ll be able to use very soon. Plus Jenn gets bossy with when I’m too tired to, so I love her for that. Sweet Eli misses his “manny” and we miss him dearly!

Erika, Erin, Corey and today Jeremy. Anticipating our every need or desire before we even know we have them. Cheeseburgers, drinks, laundry, photographs, etc. etc. etc.

Our parents who hold constant vigil and stand ready for any need we may have.

Visits from our friends Brandon and Cheryl before their flight to Scotland that same day and from one of our pastors, Joe Creech who was passing through ATL and from Leslie Reynolds, who always knows the perfect words because she has walked a much more difficult road than ours…all of these visits have given us joy and comfort and laughter.

Others I wanted to thank but haven’t had a chance to call yet: Candace and Celia, Jessica, Andy and Alex, Tracy and Jeff, Amanda and Brian, Auntie Jo, Deb, Joe, Nat and Katherine, and so many more (please forgive me if I have not mentioned you here).

All of these and so many more….carry us through with their love.

There are not enough words that I can say to thank you all.We love you all and feel your support so much. 

Warning: Content to follow is graphic

Below I am typing one brief paragraph with some graphic material. She still has some vomiting issues (she can’t keep even ¼ tsp of fluid down). That is difficult to watch, because it hurts her so much to heave—and she still has some old blood that comes up.  But the bleeding from her nose has stopped (as of last night around 10:30 pm EST). Doctors hope she will start to feel better tomorrow some and maybe hold some fluids down.

Thursday, August 30, 2007
Surgery update, ~5:40 pm EST

“Then Hannah prayed and said: ‘My heart rejoices in the LORD; in the LORD my horn is lifted high….for I delight in your deliverance.’” 1 Samuel 2:1

Thank you for your prayers today. We know that God has heard all of our prayers and has blessed us through them. The surgery went very well. They were able to get 2 iv lines in Salem, and Dr. Hudgins was very pleased. He said that when he took a look at her, there was a lot of tightness in her frontal lobe. This is good news, since it indicates there was most likely brain pressure at the front of her skull (in the frontal lobe area). Previously we had been told she did not have pressure there, which was sort of disappointing because it meant that she might not benefit developmentally from the surgery (though it would prevent future brain damage). Our prayer and cautious hope now is that she might possibly see some developmental benefit from the surgery. This would be a miracle in our lives….a true miracle.

In other good news….while Salem was under general anesthesia, they were able to draw her 12 lab tests that we have had outstanding since March (many of you may remember we could not get those labs drawn because of Salem’s difficult venous access—despite 4 attempts). We are very grateful they could draw her blood while she was asleep!

Salem did receive 1 unit of blood during the procedure, and I am so grateful for the anonymous donor who gave that blood. In fact, thank you to EVERY person who has EVER given blood (or has tried or has wanted to but can’t for medical reasons). Your blood is a precious gift of life. And if you’re A+, live in ATL, and have recently given blood, it might be your blood that courses through Salem’s veins now with healing.

Currently we are in recovery mode, which is more difficult in some ways than I had anticipated. Warning: graphic content to follow, so the squeamish among you should stop reading here. If you are squeamish and you are still reading this, thank you for your prayers….we would covet your continued prayers for Salem.

Ok, so our current challenge is that Salem is vomiting blood and bleeding from her nose. She is losing color, so we have some concerns about her current blood counts. She has labs scheduled for 6 pm EST. She is in a lot of pain when her pain medicine is administered a little late, so that is hard to watch. Because of the volume of blood she is vomiting (and gurgling), we have some concern that there might have been some sort of tear in her nose or throat with the insertion of the breathing/trach tube. For the prayer warriors among you, we would be so grateful if you could pray for her bleeding to stop. It’s so scary for her to choke like that. There’s no real good way to comfort her when she does that either.

Above all, we are so grateful for all of your prayers. To say thank you feels like such a feeble expression, and yet it’s all I have to offer with my foggy, sleep-deprived brain. We love you and our hearts overflow with gratitude for your faithfulness to our family. Salem has a long road of recovery ahead of her, and I know if she could ask, she would ask you to keep praying in your faithful way.

For the curious among you, faithful P.J. (the doll) was by Salem's side all day long.

Wednesday evening, August 29, 2007

We wanted to let everyone know that surgery is scheduled for 8 am (EST). We will arrive at the hospital at 6 am (EST). More updates to come later.

Later:
Ok...not sure if I have it in me to write a long update, so I'll just upload a bunch of pictures for now. We love you all and are so grateful for your continued prayers and love.

Our friends and family arrived today/tonight, and Aunt Erin took these amazing pictures for us...she even put them into a slideshow late tonight...enjoy!

Wednesday, August 29, 2007

At the behest of my friend Erin, we've decided to post another prayer request. Yesterday in our excitement to share our good news about Salem's blood draw, we declined to share some of the more dificult aspects of our day....mainly dealing with the possibility of a central line for Salem. Since there are so many who come here and are faithful to pray for us, I wanted to share a couple of specific requests.

When we met with the anesthesia team yesterday, we shared with them our concerns about Salem's venous access. We also requested that they review the letter our doctor from home faxed them last week (we also had a copy on hand) as evidence that we weren't overreacting. We explained that we would be most comfortable if Salem were to have some sort of central line, given her difficult venous history. The nurse practitioner told us that the anesthesia team could not order that. It would have to be performed by a general surgeron and orderd by our lead surgeon. When we explained that previous conversatons with our lead surgeon's office indicated that this was the department of anesthesia, she told us we would have to redirect our request to the lead surgeon. We volleyed for a while (Josh always diplomatic, me not so much) and finally said we would speak again with our lead surgeon's office. The really frustrating part of this consult was that the nurse practitioner told us she has seen several cases where venous access was too dfficult and the procedure had to be aborted. We explained that's why we notified them in advance that Salem's veins were difficult and that we expected them to be prepared for this. The nurse practioner told us that sometimes venous access is just too difficult, at which point a general surgeon is called in, but if none were available at the time, the procedure has to be aborted. We reiterated our desire to have a general surgeon scheduled for just such a contingency, but they redirected us to our lead surgeon. When we communicated with the lead yesterday, their office insisted that scheduling a general surgeon for that possibility would not be necessary. So this leaves us sort of frustrated.

Another concern of ours deals with wound closure. When we were interviewing surgeons for Salem's case, we made sure that this team of surgeons used dissolvable sutures rather than staples (which would need to be removed 1 week-10 days after surgery). Some of our reading about this surgery indicated that sutures were better than staples-not only because of the convenience. Only yesterday we learned that they are not planning on using the dissolvable sutures after all and have decided to use staples instead. This is a major disappointment, since it will require us to stay here for at least 2 weeks from yesterday or to return home and then back to ATL in under a week. We would love to request prayer for these 2 things:

1. that a general surgeon would be available in case one is required to put in a central line.
2. that the surgical team would consent to using dissolvable sutures to lesson the trauma for Salem and to allow us to return home more quickly.

We are so grateful for your prayers. We know that the prayer of the righteous is powerful and effective (James 5:16).

We're planning to take Salem to the ATL aquarium today...her first visit to one, so we'll post some pics sometime tonight before our friends/family arrive!

Tuesday Evening, August 28, 2007

From Josh:
Just a quick upadate for this evening.  First, we praise God and thank all of you for your prayers that today's blood draw for Salem was the EASIEST it has ever been.  Deborah, the phlebotomist, had to stick her once, and dig around just a little, but soon the blood flowed as we've never seen (sorry if that's gross for some of you, but it was a huge victory!)! It was so great, and we know that the Lord spared Salem from having to go through the same trauma she's been through so many times.  Though we didn't make quite as much progress with the anaesthesia team as we would have liked (that is, they didn't consent to ordering a central line), they did swear to have the appropriate doctor at the ready should Salem's venous access be problematic come Thursday. It's about 8:20pm now and Salem has just gone to bed. She was a real trooper all day - hardly a nap on account of the hospital and the doctor appointment.  Thank you all for thinking of us and praying - we love you!

   

Here we are with the illustrious Deborah.  When we met her I explained to her how difficult Salem's venous access has been in the past and what a nightmare experience it turns out to be every time, even with the best at Arnold Palmer Children's Hospital.  She just sort of looked at me and chuckled, grabbed Salem's arm, searched for a few minutes and "Bam!" she had a vein - unbelievable!!  I asked her if she would move to Orlando.  Sadly, she said "no."  But, she did consent to a picture.  

From Keely:
While we were here in ATL, I've decided to have some work done myself. I'm coming back to FL a brand new girl... :-)

ok...so if you kept reading in the picture, you would know this is the office of one of Salem's cranial surgeons (and not sadly the office of my Dr. 90210), but I hope at least a few of you were convinced...especially since I look so pregnant (though am definitely not) in this picture. :-)

Tuesday, August 28, 2007
Home Sweet Home and a royal welcome from the Courtyard 

Well we've arrived safely in Atlanta and are ready to get things rolling here. We have a couple of appointments scheduled for today—the first is our blood work appointment at noon and then we have an afternoon appointment with one of the surgeons. Salem did well last night, despite the very late bedtime of midnight. She woke up bright and cheery this morning and is already having fun playing with some of her toys (and her daddy) in the hotel. She thinks it's hilarious when he bounces on the bed.

We're starting to make ourselves at home. And the staff of the hotel is making that so easy....giving us a royal welcome and loving on Salem already. Their wonderful manager, Natasha, remembered us from our last visit, and we remember her really well too...she has such a warm, welcoming smile and is very kind. To our total surprise, my friend Dawn (who works for the hotel chain) called the hotel last week to see if she could arrange a discounted rate for our room (isn't Dawn the BEST? THANK YOU, DAWN!!), and Natasha remembered us right away. She even put our names in the hotel newsletter so that the whole hotel would know to remember Salem. I don't even know what to say. So much love...and on a pretty scary week. We are so blessed--and grateful for the Courtyard Mariott Staff.

Speaking of home, I had to post a couple of pictures from Salem's fun speech therapy session yesterday afternoon. This is Salem's favorite speech therapist, Ashley. Who knew that latex gloves could be so much fun?

We'll update more later. We remain ever grateful for your prayers.

"'Comfort, comfort my people,' says your God." Isaiah 40:1

Sunday, August 26, 2007
Blessing of oil

Today has been a day of blessing and of preparation. At the behest of a friend, we contacted one of our local ministers and asked whether the church ever did anointing healing services. To our delight, they do! And this morning we made our way to the church with Salem where 2 of our pastors and 8 of our elders joined us in prayer and anointing of oil for Salem. It was a beautiful ceremony, modeled after the passage of scripture in James 5 that calls for anointing oil and prayer for the sick. It was such a precious, peaceful time. At first, Salem didn’t like it too much and began to cry when everyone gathered around her, but as soon as one of the elders whipped out his keychain as a makeshift rattle, she was soothed and loved playing with the keys. I’m tempted never to wash her hair again, because the oil looked so beautiful in her hair, but I know that the power is not in the oil and besides the beans Salem had for lunch don’t look so pretty in her hair at the moment.

Still, despite this blessing, today is the first day in a while that I’ve woken up with anxiety. Part of it is that I loathe packing—almost as much as I dislike unpacking. It gives me a lot of anxiety…I think that started after Salem came home and as soon as I realized that packing with a child was a whole new ballgame. Now this wouldn’t be so hard if I didn’t have to be Preparation-Spice everywhere I went. I think it’s the only thing I think I can control at the moment, so with that excuse in go the monitors and the blankets and the i-pod docking station and the digital camera and the diapers, wipes, food, dolls, toys, more dolls, therapy tools, favorite books, clothes a plenty and whatever else I think absolutely essential to the trip. The problem with me is that I can rarely tell the difference between absolutely essential and completely unnecessary. Take, for small instance Salem’s therapy beads. We have 7 strands of them. And I thought I was doing well to only pack 4 of the 7 strands. Why? 1 strand of beads would be perfectly sufficient, but I began worrying that I wouldn’t have her favorite color or that she’d get bored with just one strand, so in most of them went. Still, I have to say I’m moderately proud of myself for resisting the urge to pack all 7 strands (although I must confess this I owe at least in part to not being able to locate the other 3 strands at the moment).

Generally before a big trip I can’t sleep the night before. Unfortunately that started last night, as I tore through my mind thinking about the different things I would need to come prepared with. I think one day it would be really healthy for me to pack 1 pair of everything and just go….it would probably be wonderfully unencumbering, but I don’t think this is the trip for turning over new leaves. Anyway, I come by it honestly. I’m the daughter of a man who mails spare pocketknives/leathermen to his anticipated destination in case he forgets to check the ones he always carries in his pockets. Ok, Dad, so maybe you only mailed it to my house but still….I’m just saying I come by it honestly, and I’ll be the first to admit that preparation has come in handy too many times to count.

Ready or not....(plus the pack-n-play and the carseat)

Today is one of the final “over the head” clothing days for a while. I’m not bringing too many of these to Atlanta with us (mainly zip up pjs), so we wanted to post another picture—this time in her new Estes Park t-shirt that Aunt Erin sent her. Can you tell she’s happy in the shirt? I think it’s because she knows she’ll get to go horseback riding in Estes Park one day. And because she knows she’s pretty in pink.

Friday, August 24, 2007
A Father's Thoughts

Nearly every night before Salem goes to bed we head to her nursery, pull out the guitar, and sing a few songs. This seems to be the highlight of Salem's (and our!) day, as she loves to grab and bang daddy's guitar (and laugh at him) while he fumbles through the couple of chords he knows. Mommy sings in her heavenly voice, which Salem loves, and I get to enjoy it all. One of our favorite songs to sing is "On Jordan's Stormy Banks" – a wonderful hymn about our joyful and sorrowful journey toward the new heavens and new earth which our Lord will one day bring in full force. As the song celebrates the good and gracious reign that will be consummated by the Father, Son, and Holy Spirit, the third stanza sings:

No chilling wind nor poisonous breath
Can reach that healthful shore;
Sickness, sorrow, pain, and death,
Are felt and feared no more.

With Salem facing this intense surgery, and more, a life already full of sorrow and suffering, we are ever more aware that things aren't the way they're supposed to be – that indeed, "sickness, sorrow, pain, and death" are felt and feared every day. Our God created this world "very good," he tells us in Genesis 1.31. But the deep shalom for which God made us and our world has been vandalized by sin, death, and brokenness. And that vandalization touches every corner of His good creation, including the life of our beautiful Salem. And though countless others suffer many times more deeply than we do in this ordeal, our hearts break for her and we long ever more for the day when our King will make all things new (Isaiah 43.19). And we are not without hope. Mark opens his Gospel by saying:

"The beginning of the gospel of Jesus Christ, the Son of God. It is written in the prophet Isaiah: ' I will send my messenger ahead of you, who will prepare your way – a voice of one calling in the desert, 'Prepare the way for the Lord, make straight paths for him'" (Mark.1.1-3)

Mark uses the word "gospel" to describe the coming of Jesus – a word drawn from the prophet Isaiah, who says that the "gospel" is nothing less than the return of Yahweh, Israel's covenant God, to his people to inaugurate the restoration of all things, to bring forth his salvation, and to make all things new (see Isaiah 40-55, and 52.7, 61.1 especially for "gospel" in Isaiah). And that, says Mark, is what Jesus has done and who Jesus is – he is Yahweh come in the flesh, made a man that he might inaugurate the restoration of all things, and this he has done through his life, death, and resurrection. Indeed, by his resurrection, he has defeated sin, death, and brokenness, and so gives us a sure hope by His Spirit, that he has begun the work of renewal in his first coming, continues it now as He reigns at the Father's right side, and will complete it when He returns.

So what does all of this have to do with Salem as she faces a host of struggles? It has everything to do with it. It means she has a King who has won the battle for her – that though she suffers, he will carry her through as surely as he rose from the dead and reigns in heaven. It means that we have a God who works not in spite of suffering, but by the very means of suffering. It means that, even as we weep for her, we have the downpayment of the Holy Spirit, who intercedes for us on our behalf, and bears our burden before our heavenly Father for him to redeem however he sees fit. And it means we have a whole family, a host of brothers and sisters, fathers and mothers who too have taken hold of the hope held out in the gospel, who intercede on our behalf before our gracious Father.

In the Lord of the Rings, King Theoden is slain in battle, fighting the powers of evil. Once the war is over and victory against darkness sure, there is a song sung in his honor that goes like this:

Out of doubt, out of dark, to the day's rising
he rode singing in the sun, sword unsheathing.
Hope he rekindled, and in hope ended;
over death, over dread, over doom lifted
out of loss, out of life, unto long glory.

This is the song we sing to our King Jesus – who was slain for our sakes, yet rose "unto long glory," that his name might shine through the earth, and that we might rejoice and exult in him. Though doubt and dark may linger, he yet fights for us, and will one day finish the battle. He fights for our Salem, for he loves her as his own (Mt.19.14), and he will care for her as he alone is able.

Thursday, August 23, 2007
"Will everything sad come untrue?"
With a poll at the bottom....

As I type, I hear the sweet sound of Salem's little laugh behind me. She is playing with a new toy that we bought for the hospital...at first she thought she hated it and she's still not sure. Sometimes when she spins it, it gets really loud and her little laugh starts to tilt toward a whine and eventually a cry. But for this minute at least she likes it, and that makes me smile.

1 week from today we will hopefully be finished with surgery and in recovery. Already since sending an email yesterday I am amazed at the peace we have in our hearts-- a fierce sort of Peace (if such a peace is possible) that holds to us tenaciously and will not let us go. It is a peace that we rest in, the calm before the storm, and we know that even when the storm comes, He will hold.  We know that we walk with this Peace because of the innumerable prayers that are already being lifted on our behalf. I wish I could acknowledge every prayer in every place and say how much they mean to us, but please know that it is your prayers that allow us to walk outside of the shadow of fear and for that we are so grateful.

After 5 years of marriage, I have finally fulfilled one of my long lost pledges to Joshua. I have finished reading Lord of the Rings. I promised him years ago that if he would consent to read Harry Potter (because I knew that he would love it too), then I would read LOTR. And, of course, I loved it. Most of the final book Josh read aloud to me late into the night after we put Salem to bed. His favorite line is Sam's toward the end when he sees Gandalf again for the first time, "Gandalf! I thought you were dead! But then I thought I was dead myself. Is everything sad going to come untrue? What's happened to the world?" When he read that line we both started weeping silently and together wondering if whether in this life some of the sadness we feel for Salem will come untrue....and knowing that there is a time and place that we can be assured of that. I think of the Farley's and the agony that must be theirs to bear, of Morgan Reynolds and of so many others who have suffered so long. I think of orphans worldwide who have borne more grief in their short lives than most of us will ever know, and I long for the sadness to come untrue.

That longing leads me to think of Revelation 7:17, "For the Lamb at the center of the throne will be their shepherd; he will lead them to springs of living water. And God will wipe away every tear from their eyes."

Salem has long ago decided she doesn't like the spinning toy again, so I turn myself back to her and away from this screen. Before I do, I wanted to attach a picture of Salem with "her girls." She loves these dolls--each in their own way. She likes to kiss Love Bug, because she likes to feel her plastic face, and she loves PJ (although I think PJ looks scarily like ET at times). She likes Peppa (my personal favorite), although I don't think that she appreciates that Peppa is fair trade. For a while I was debating about which of the girls would come with us to Atlanta, and after much discussion, I think we've finally reached a decision. They will all come. Still I'd love to know which of the girls you like best. From left to right they are Slaudink (named after one of our favorite girls in the orphanage), Love Bug, Baby, Peppa, and PJ. See the poll below Salem's picture. :-)

Here are some wonderful slideshows that my friend Erin Nolen took. She's an amazing photographer and friend.

Christmas at the Beach

Our Visit to Helena

Salem's 1st Birthday

Tuesday, August 21st, 2007

As many of you know, Salem has had a long journey—not just home but since coming home too. She has endured so much in her short little life and is a constant inspiration to Josh and me. Since the early spring we noticed that try as she might, Salem was falling behind developmentally. Since that time she has worked so hard in therapy 4x/week and has shown some wonderful improvements, though she still has a long road ahead of her. We believe that these delays are the combined effect of her very difficult start in Ethiopia and her diagnosis of microcephaly. In addition to this, Salem was diagnosed in May with metopic craniosynostosis, a fairly rare cranial disorder that will require extensive surgery for repair. After scouring the nation for the team with whom we felt most comfortable, we decided on a team in Atlanta—the very same surgeons who worked with Morgan Reynolds and our friend Megan. Salem’s surgery is scheduled for Thursday, August 30th. It is this surgery and some of the other battles that Salem faces that compel us to write to you, our dear friends. We would like to ask you once again to pray with and for us as Salem makes this difficult journey. We could never thank you enough for the innumerable prayers you have already offered on her behalf.

The basic summary of Salem's surgery and our specific prayer needs are as follows:

Pre-Op
On Monday evening, August 27th we will fly to Atlanta for some pre-operative appointments. On Tuesday, August 28th we will have some routine blood work. I say routine, but as many already know, there is nothing routine about blood work with Salem. Her veins collapse extremely easily, and what should be routine draws always become torture for her. We've even tried harvesting the blood with arterial sticks and those either clot immediately or are inaccessible. For these reasons, we are trying to request that the Atlanta anesthesia team use either a PICC line or a femoral line for both the lab work and the surgery. Our prior calls to Atlanta to request this have been met with expected resistance, so we would like to request prayer for this. This is also critical to us since there is such a high likelihood of Salem requiring a blood transfusion during the surgery. Obviously, if she requires a blood transfusion we would feel more comfortable with more sure venous access.

Surgery
On Thursday the 30th, Salem's surgery will take place. Because Salem has been diagnosed with metopic craniosynostosis, this will be a complex surgery. The diagnosis indicates that one of the sutures in her forehead closed prematurely, prohibiting her brain from growing in the appropriate shape. In order to allow her brain to take the appropriate shape, surgeons will have to open her skull with an ear to ear craniotomy, remove the fused bone from her forehead, and reshape her forehead appropriately. Dissolvable plates will be inserted that will allow her forehead (and by extension, her brain) to continue expanding. As we understand it, there is a 50% risk of Salem requiring a blood transfusion during the surgery. She will also be placed on a breathing tube throughout the surgery due to the edema.

Recovery
The good news is that recovery from the surgery is amazingly quick. Many times they release patients 4-7 days after the surgery. At that point, Salem's eyes will still be swollen shut, so that will obviously be scary for her. Hopefully we will be able to return home ~10 days-2 weeks after the surgery. Her eyes should be open by then, but it will take 2-3 months for the swelling of her head to subside.

Our primary concerns are:
1. venous access: (we do not want this to be torturous for Salem as it has been so many times in the past, and we want a more assured access for the surgeons in case a transfusion is required) 2. insurance: our primary surgeon and hospital are out of network. We have known this since June and have been calling our insurance company regularly about this. I think Josh has spent about 14 hours on the phone with them. We have been told many times that we have been approved for in network coverage (which of course we've meticulously documented), but the promised letter never arrives. Follow up phone calls to check the status of the letter usually are met with repeated denials that we have been approved for coverage. It would be a real blessing to have that coverage guaranteed in writing prior to the surgery date.
3. Our peace as a family, and most especially Salem's comfort in recovery.
4. In addition to this cranial condition that Salem has, she has a very small head/brain. She is considered microcephalic and is developmentally delayed. We would like to request specific prayer that her brain would continue growing and that she would develop normally.

Thank you so much for offering prayer on Salem's behalf. We are so blessed to have a community that embraces us so lovingly--a community that is willing to approach God's throne on behalf of us all.

"In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us with groans that words cannot express. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for the saints in accordance with God's will." Romans 8:26-27

Another MRI down—another round of blooodwork too!

Salem continues to amaze us! After 9 hours with no food, Salem was hungry as everything, but despite being really hungry and thirsty, she was so sweet. She began whimpering at the hospital a little bit, but she really hung in there. I can’t believe how much she will endure with the same sweet little spunk. I know she doesn’t get that from me! She was pretty grumpy when it was all over, but so were we all. We decided to join her in her fast today as a demonstration of our family solidarity, so I guess we were all ready to eat. We were never so happy to see goldfish snacks, whole milk, and a Wendy’s cheeseburger (or 2) as we were on our way home! :-)