Here We Go...

We got the green light from the pediatrician on Wednesday, so the surgery is set for Monday at 0730. My approach with Abbie in all of this is honesty. She deserves to know what is going on, what is being planned, and why. Of course, I tell her in terms that a 7-year-old can understand. Once in a while, though, she lets me know I'm not being thorough.

I was explaining to her doctor exactly what the surgery will entail, when I noticed a look of deep concern on Abbie's face. Oops! I'd forgotten to tell her one very important detail. "Abbie," I said, "You are going to be asleep during all of this. You are not going to feel anything. Uncle Bill and Uncle Rob, Auntie Lynette and Auntie Jayna, AND Mr. Bear are all going to be right there with you. Daddy and I will be waiting for you when you wake up, OK?" All better...worry lines gone. You'd have thought I would have mentioned that part to her a long time ago!

So, we are just about ready. Mr Bear (a beany baby) had a bath yesterday, her new nightgowns are stacked, and most importantly her lungs are perfectly clear. RJ's class was scheduled to have their much-anticipated week long camp beginning Monday, but late Friday evening we got an email that the camp was double-booked, so the trip would be postponed. A couple of tears of disappointment and frustration slid down his cheek, but his whole countenance changed when I reminded him that now he could be here for Abbie while she's in the hospital --something he's been very concerned about missing. So concerned, in fact, that he's been insisting that he will go to the hospital with us at 5am on Monday, and then walk the 2 blocks to school. He is not as overt in his affection and concern, but his love for his sister runs DEEP.

Ray and I are at complete peace with this surgery, and are confident that all will be well. As I began pulling everything together this evening I thought, "I didn't get advance notice the last time we went to the PICU on a far different Monday. I sure like this way better!" Part of the reason I like it better is that we can PRAY ahead of time. Here are some specific things you can help us cover in prayer:

-- Peace and security for Abbie, the bravest one among us

-- No anesthesia problems, clear lungs, extubation in the OR or recovery room

-- No blood transfusion: The surgeon says she will definitely need one, but I'm still praying. If she does need blood, we are praying it is clean, healthy blood, and praying that God would bless the giver.

-- For the team: surgeons, anesthesiologist, nurses, techs: that God would give them wisdom, precision, skill and flow, that things would just "click" in the OR

-- Abbie's two PTs, Lynette and Jayna, will be in the OR to observe, but in a way they will also be my hands and presence. I
don't think I could stand to be in the OR, even if allowed, so these two will be there as professionals, but also as my
proxy. Pray that Abbie will sense their presence and support, and that they will benefit from being in there.

-- Complete surgical success: The hips are in a position where they don't like to go back into the sockets. Please pray they'll be willing. The surgeons will also rebuild the right socket using bony material taken from the femurs when they are shortened. In addition, three muscle release or lengthenings are planned: her adductors (inner thigh), the rectus femoris right above the knee, and some tendons on the outside of her ankle. Please pray that each procedure would go smoothly and produce the best outcome possible.

-- Aggressive pain control. Abbie will have an epidural for the first couple of days, so this should really help. My goal is to not let her suffer one more ounce than is absolutely necessary.

-- Quick recovery: even more than pain control, I am praying for pain abatement. Please pray that she would not have muscle spasms, since this will be the major source of pain after the immediate post-op period.

-- Joy! We went to the lab for pre-op blood work on Wednesday. It is in the basement near the OR. As we were leaving, I saw an OR tech pushing an empty gurney. My stomach turned as I imagined putting Abbie's little body on that very white sheet, and I wondered whether all our confidence is a mirage that is going to evaporate on Monday morning. Are we really ready? Then, I realized I was looking at it all wrong. Thank the Lord that we live in a place where my girl can have a surgery to fix her legs -- how blessed we are! So, I am praying to hold on the right perspective, no matter what happens. We will count it all joy.

Abbie's OT recently lent me a copy of "The Shack", which I read in 2 days. What a preparatory blessing, to catch a sidelong glimpse at just how big God is, and how much more is going on than we can see. Every morning I stretch Abbie out on the massage table. Her favorite exercise is stretching her neck (she smiles at just the mention of it.) I call her my "swan-necked girl", and make up silly songs about that while envisioning the two of us dancing in meadow...her body moving freely, her curls blowing in a breeze and her voice sweetly carrying the tune with a giggle. For a moment, she and I escape together, as our spirits go to the meadow. The book made me realize I think God smiles at that, and perhaps even hums along.

As I come back to the massage table, and look out at the pool, I also realize that it looks much different to Abbie than it does to us. For a long time it looked like a cemetery to me...the place where our "happily ever after" died. These days I can watch the boys splash and play with friends without sadness gripping my heart - so perhaps we're back to neutral. But, for Abbie, I think she looks at it as the beautiful turquoise door that lead to her grand adventure with God. I'm so glad she came back to take the rest of us along with her!

I will try to post as soon as I can after the surgery. Your prayers are powerful and sustain us more than you know!

The Face of the Enemy

For so long we heard that brain cells cannot regenerate. False. They do it all the time in petrie dishes. Why not in injured brains of living people? Behold that bright, colorful picture above, and don't be fooled by the rainbow...this is the enemy of every person striving to recover function and potential after a brain injury. Meet the Nogo protein.

This protein, along with a few of his similar-minded friends are called "outgrowth inhibitors"; they tell injured cells not to regrow. They are the reason that precious stem cells don't seem to have much of an impact on recovery. We are loading our loved ones with millions of cells of potential, only we are putting them into an environment that will not allow them to develop. It's sort of like sitting in a Ferrari at a stoplight...you can imagine the possibilities, but if the light never changes color, that possibility is never a reality.

Lately, I've been fairly obsessed with this little devil, and my research has shown that as long as five years ago scientists were having success in disrupting the action of Nogo in the injured brains of rats, who exhibited functional gains as a result. I wonder...how far down the road we are towards trials in primates and humans.

And, I wonder if you know that in this country there are:

-- Around 5.3 million people living with some form of disability from traumatic brain injury -- this figure does not take into account survivors of anoxic injury like Abbie.

-- 1 million people who are treated and released from an ER every year because of traumatic brain injury

-- 230, 000 people who are hospitalized annually, and survive

-- 50,000 people who die every year from TBI

By comparison, the American Cancer Society statistics show 184,450 new cases of breast cancer last year. While the American Heart Association reports that the most current data assessed shows 920,000 Myocardial Infarctions (heart attacks) in 2005. I wear pink ribbons gladly, and Ray sits on the board of the Heart Association...so, EVERY malady that affects people is important. But I wonder....where are the national spokesmen, women, and campaigns, the fundraising efforts, the legislation, and the well-funded research for the forgotten, invisible brain injury survivors and their families?

You know where they are? Focused on battles that seem winnable because the enemy has been defined: cancer cells, artery plaque...while brain injury has seemed a shadowy, one-way hallway where you don't even know there's an enemy, much less can you name and identify him.

As an Army officer I learned that to defeat an enemy, you must KNOW him, and know him well. I am encouraged by the research I see exposing the ways and means of Nogo. But, an Army also needs supplies, weapons, and support. We must frame our issue more appropriately, and more precisely in order to attain what is needed to win the battle on our particular front.

I have written a letter to the chairperson of the Brain Injury Association of America, Mr Joseph C. Richert, as well as the president of my state's chapter to encourage them to frame brain injury recovery as more than a shot in the dark, to define the challenges limiting recovery (name names!!) and to ask for research focusing on making the environment in the brain conducive to recovery. We now have someone to shoot at (not Mr. Richert, but Nogo!), and that makes all the difference. If you are a brain injury family, would you consider doing this as well? www.biausa.com

Seeing a picture of Nogo gave me great hope, not only because I can envision the scientific victory, but because this very day, I can now pray very specifically. God need not wait for elegantly-designed studies and new techniques...he could strike Mr. Nogo dead in his tracks right now. Will you join me in praying for that...for Nogo to be corralled back to his normal function in the body?

I fervently believe that especially in the body of a child, whose primary urge is to grow, if we could find a way to turn that light from red to green, those little axons would sprout like spring wildflowers.

Speaking of blossoms, my little Blooming Flower and I have been enjoying these unexpected cast-free days by running together each morning. Abbie gives me encouragement and joy while surveying the dogs, birds and flowers along the way. I found out last weekend she also gives me extra training, when I went running without her. I am so used to pushing her stroller that probably weighs 65 pounds with her, the suction machine, and some counter-balance dumbbells in the foot wells, that it doesn't feel like effort to me. As I came to a hill last Saturday I fell in behind a musclebound jock-dude, thinking he would set a good pace. Five steps later I had to pass him, as he seemed to be plodding along while I fairly flew to the top. I felt so bad for him, getting smoked by a girl and all, that I thought perhaps I should explain that I'd been trained by the best:)!

As I continued my run I realized that hill was just like life. When God instructed us to "run the race marked out" for us, he didn't mean for it to be burden-free, for it's that additional weight that makes us strong, builds our character, and conforms us to His image. There will come a day, however, when we run freely, the burdens permanently lifted in the blink of an eye. We will rejoice in what we carried, for it will have given birth to the wings on our feet. If my Saturday run was a foretaste, I cannot wait! When you see me, I will be the one sprinting to the top of the hill with a goofy smile, trying to catch that rascally girl in front of me.

Wait...

First up, the big news is that due to Abbie's recent (and ongoing) cold, we have delayed her hip surgery. The new tentative date is October 13. The surgeon wants her lungs to be completely clear for two weeks pre-op, so please pray that they would dry out and heal. The appointment with the surgeon yesterday gave us time to ask lots and lots of questions, with the result that I am now even more excited thinking about the outcome for Abbie. This is a huge undertaking, to be sure, but one that is not optional. So, we must focus on the bright side, which is brilliant when you think about it. She will be able to stand easily, she will be able to pedal a stationary bike (with assistance), and most of all, she will be comfortable!

That's the "bottom line up front" update, but what I really want to write about is what has happened in the days leading up to that appointment. The harder I am pressed, the more Christ intercedes on my behalf. Just when I think I can't bear the suffering, I am released, renewed, reminded.

Genevieve had to go to the Philippines last week on short notice. This gave Abbie and I a lot of time together, and many fun events filled the days. I had volunteered to help the twins' classes tie dye T-shirts last Friday. With them short of helpers, I didn't feel I could back out just because I didn't have nursing. So, Abbie tagged along and was thrilled to be immersed in the chatter, laughter, and energy of excited sixth graders. She was so proud to be at her big brothers' school, and so pleased to see her boys in the middle of the day. The other parents were so kind, as were the boys' teachers and classmates. There are days I don't have the stamina or heart to be different, to tell the story, to answer the questions...but not that day, it was an absolute joy not to feel limited by Abbie's injury but to seize the chance to participate anyway.

Saturday evening we went to a birthday party with a pirate/Pocahontas theme (the back story is hilarious but way too long to tell). All the kids really got into the Native American thing, creating tribes, speaking with accents, and coming up appropriate names. I almost cried when the two oldest girls, Jamie and Keiko, approached Abbie and I and said, "We've come up with Abbie's Indian name...Blooming Flower!" I could not have thought of anything more appropriate if Pocahontas had been there to help me. Abbie grinned at me every time I called her that, even as she was later falling asleep in her bed. "Blooming Flower" indeed! Makes me wonder if her name in Heaven will be "Blossom!"

Monday night, however, the reality of the looming surgery set in as I prepared notes for the physician and jotted down all my questions. Even with all we've been through, what we've learned of God's faithfulness and the kindness of people, the thought of anything happening to Abbie still shakes me to the core. I held it together until everyone else was in bed, then Abbie and I opened a big box that my mom had sent to "Princess Abbie." Inside were many colorful, soft, beautiful hospital-style nightgowns. Granny wanted make sure Abbie had a full wardrobe for her time in a cast. Already in tears by this point, I then pulled the most beautiful quilt out of the bottom of the box..with scalloped edges and flowers stitched over the design, it is exquisite. I was so overwhelmed with the love packed in that box, that I fell to pieces.

I was sobbing thinking, "This is such a personal, private hell. I cannot bring anyone here with me, I must endure this on my own." [BTW...what a lie!!] I went to the computer to print out the notes, and there was an email from my sister. We are both so busy we don't email much, but she just wanted to check in, to see how I was and to let me know she was thinking of me. The tears moved from streams to rivers...even across the ocean my family was surrounding me -- my mom's quilt was hugging me, and my sister's words were shouting "You are not alone!"

These reassurances continued in very unique ways the next morning. Unable to sleep, I got up and took Abbie running very early. As we rounded one corner I saw a shred of a rainbow nestled into a whisp of clouds. They always comfort me, but this time I stopped in my tracks and really looked at it, imagining where the entire rainbow would be if I could see it. After I started running again, I didn't think much more about it until I turned the corner at our house. There was the same rainbow...but all of it, shining from one end to the other. It hit me that it was an analogy for Abbie...we can only see, only experience part of her, but she is as whole as that rainbow, we just don't get to see all of it right now. Someday, we will round a corner, and there she will be -- our Blooming Flower in all her brilliance

Renewed by the rainbow and the exercise, I loaded Abbie up to head to the appointment, resolving to replace my dread with hopeful anticipation. We were early (yet another sign of God working in our lives!!), so I stopped at the pharmacy window to buy some eye gel. From behind me I heard, "Is that Abbie?" I turned to see a petite, blonde woman who then asked, "Are you Abbie's mom?" Heather told me she'd just been on Abbie's site the night before (probably as I was melting down). I asked how she'd ended up at Abbie's site, and she replied that she's been reading it for years...tears filled her eyes as she expressed her gratitude for our sharing this journey. This sentiment always dumbfounds me, as I feel like I am requesting the prayers, grace, and support of you all and giving little in return. But, as we embraced I told her that she was my angel this day, reminding me just before boarding the elevators that we are never, ever alone! Thank you, Heather!!!

The postman has also been a messenger of grace this week, with surprises often filling our mailbox. In addition to the gifts from Granny, Abbie received the latest greatest Barbie movie from Auntie Debbie, and a sweet card and more stickers from her Sticker Buddy, Kathryn Trapasso. These gifts are exciting for Abbie, but the thoughtfulness behind them is overwhelming for her Mommy.

And then there's this (the patient reader's reward): We have discovered that one thing Abbie truly enjoys, focuses on, and excels at is prayer. She knows she is doing something important, and after all...she knows the face of the One to whom she prays. She loves to hear the impact of her prayers. One specific boy she's been praying for for several weeks is named Chance. He's a fourteen year-old from Maui who was diagnosed with epilepsy last year. Three weeks ago he was surfing with his dad when he had a seizure. He drowned in the ocean. We recieved an email within a couple days, and she went to work right away. I got to meet Chance and his mom last Saturday. I was ASTOUNDED by this boy!! No trach, no G-tube, moving his tongue all around, making expressions with his face and noises to accompany them, moving his limbs. Amazing. He has lots of people praying for him, but I just know Abbie is among the most precious and powerful. You can pray for him too, and encourage his family at www.prayforchance.com.

So....if Abbie can pray for you in any way, please let us know by leaving it in the comments after the postings, putting in the guestbook, or emailing us at varasix@aol.com. Abbie yearns to DO things, and this is something she can do well; please grace her with the privilege of praying for you!

Making Friends

Last Thursday Abbie and I took an evening stroll over to Barnes and Noble. After putting up with my browsing, she was ready for a story by time we hit the children's section. We'd just settled in when two little girls, one a foot taller than the other, approached shyly.

"Is she paralyzed?" asked the taller one, with the shorter one nodding and smiling.

"Well, sort of, " I replied, explaining that she had hurt her brain, not her spinal cord, but that it was still really hard for her to move her body. I had them do a little exercise with their hands that let them understand what it is like to be Abbie...they could comprehend my directions, but they could not get their fingers to move. They were so intrigued, and so tender-hearted that story-time quickly became "show and tell" instead.

They asked about Abbie's switch, so I let them record their voices on it. Abbie was thrilled to have a little girl's voice saying "Turn the page, please!" They were so tickled to hear their own voices that they asked to read to Abbie.

So, I stood back and watched Abbie make two new friends...who, it turns out are TWINS! And, I thought my twins look dissimilar! They took turns talking to Abbie and talking to me.

"I think she really, really wants to walk...because, look at how much she is moving her legs!" I loved that observation.

I finally glanced over to a nearby bench to see a woman transfixed by what was going on. It had to be the twins' mother...and she nodded when I mouthed that question.

I stepped over to thank her for allowing her girls to come say "hello" and play with us. As I did, Abbie began to eavesdrop, as she normally does. Whenever the mom would ask a question, Abbie would use her switch to answer before I could get the words out. It became almost comical.

"Does she like 'knock-knock' jokes?" asked Tall Twin. I confessed I was not sure, but that I did know Abbie had a great sense of humor. So, they read a joke book together. Tiring of that, Tall Twin went looking for something new, and found a book about the body. She asked for advice about what Abbie would like to read, so I pointed to the sections about muscles and bones, and off she went again.

I did notice that when she was asking for her mom's input about the reading selection, it sounded like she spoke a mish-mash of French and Polish. "Indeed," confirmed their mother, "the girls are trilingual: French, Polish, and English." I would argue that they are equally fluent in a fourth language: Love.

Their mother asked me what had happened, and thankfully the twins were hunting for new books while I quickly explained. As we talked, being occasionally interrupted by Abbie, she was amazed at how far Abbie has come. At one point she looked straight at me and said, "She is a miracle, this girl." Oh, yes...she is!

Regrettably, it was soon time to go. I learned that Adeleida (tall) and Margareta (short) go to the bookstore often, so I told them to look for Abbie, and that even if I'm not with her, they should just walk right up to her like the friends they now are.

I tried to thank the mother properly, but was not nearly eloquent enough. How to express gratitude for allowing her daughters to take the risk....to risk a mean or offended response from me, having their feelings hurt, or just being ignored? Most little girls make new friends all the time, but for Abbie (and her mother) this was a monumental evening.

We practically skipped home under a pink sky, the stars twinkling in tune with our song. No wonder Jesus said, "Suffer the little children to come unto Me." Innocent curiousity, unfettered by socialized fear and overpolitness, built a bridge to Abbie that evening. Turns out that little children are the best bridge builders of all!

If you have children...let them risk it, let them build the bridge to someone different...there are precious few crossings for children like Abbie, so let the little hearts lead, and perhaps you will find yourself pounding a nail or two as well!

Golden

On this long-distance journey I often grab bits of encouragement from people in whom I see qualities I want to, indeed, must emulate if we are going to reach our destination. Amazing people like Brian Kajiyama who show what is possible. Other brain-injury families who model commitment and stubborn hope. And, yes, given my bent for enjoying sports, our new Little League World Series Champions from Hawaii, who embodied "No Quit!"

This Friday, however, I was so blessed to spend time with one man who underlines the word "Persevere" for me. Bryan Clay was in town to celebrate with family, friends and supporters after winning the decathalon gold medal in Beijing. Because one of Ray's hospitals, Straub, is Bryan's long-time sponsor, we went to many events in his honor, beginning in the afternoon. By late evening we were sitting with Bryan's doctor and his wife, and a very weary Bryan and Sarah Clay at dinner. Their graciousness, in the midst of their current whirlwind astounded me. I was surprised that Sarah recalled so clearly having dinner with us a couple years ago, and still knew how old Abbie is.

As the dinner was winding down I wanted to get a picture with Bryan, Sarah, and Michelle, Bryan's sweetheart of a mother.



After we snapped this photo, Bryan and I stepped into the corner to chat for a moment. His weariness melted away as he began talking about what is deep in his heart. He described his amazement at the doors his gold medal is opening. Not the one that found him hanging out with Tiger Woods a few days ago. Not the one leading to a scheduling conflict between appearing on the Oprah Show or at the Republican Convention. But, rather, what animated Bryan was the opportunities he is going to have to do good on a scale he could not have conceived. As he said, "I was thinking about Hawaii...now people are talking to me about global projects!"

At this point Michelle walked up and said something like, "Oh, Bryan, she is so good with words...you should read her site." To which Bryan answered, "Oh, no, Mom...I have..we have." I was stunned, and then he turned to me and said, "I recall it being something that really impacted Sarah and I." I was almost humbled to tears, but this gave me a chance to relate his journey to ours, and ask him the question on my heart.

"How?" That was it. How to persevere when the challenge is only met day by day, by a "long obedience in the same direction?" He spoke of the crushing weight on his shoulders, as a husband, father, and provider, in the year leading up to Beijing. If he did not win, would his wife have to return to work? Would he have to quit track? This was not just an athletic competition, this was a lifetime turning point for the Clay family. I feel his struggle wanting to measure up to both potential and requirement, and empathize with being overwhelmed. But, what he said next will stick with me forever.

"I knew God had told me I was going to win the gold medal...it was so clear." "Wait," I interrupted, "Did He tell you that before you won the silver in Athens?" "Yes, " was the reply. " So, even after the silver, or 'un-gold', and through all the challenges that followed, you kept believing what you heard?" I asked. "Yes," again.

What seems so expected now, a natural outcome -- Bryan won by an impressive 240 points -- is really the culmination of a journey of twists, turns, challenges, and God's faithfulness. Who would think that the world's greatest athlete would come from Hawaii, from tiny Azusa Pacific University? But, the same God that chose David, the youngest of Jesse's sons, chose Bryan. And the same God that made promises to Bryan, fulfilled through hard work and dedication, is the same God that has made promises about Abbie, which we pursue in like manner, with perseverance and hope.

I couldn't resist snapping a picture of this. An Olympic gold medal tucked into his back pocket...




The boys also got to meet Bryan. RJ and Matt both happened to be wearing red, white, and blue shoes, which they had Bryan sign.




The events of that evening didn't really sink in until I returned home, to Abbie's room. There, mounted in the corner, was the ancient TV on which we watched Bryan compete, win, and receive his medal just the week before. Abbie had been so excited when I told her Bryan won, and her face showed the same thrill when I told her that I had seen him and touched that very medal.

Champions inspire us, pushing us to dig for that same chord of greatness within ourselves. Spending time with Bryan and his family tonight was a divine gift to spur us on, and to help us remember that long-sought promises are especially sweet when they arrive.

/All photos rights reserved, property of Tiffany Vara

Seven!

8/23/01 --- How incredibly many times I've written that date on medical forms, insurance forms, therapy forms, so many times that it just becomes a jumble of numerals, not a remembrance of an amazing day for our family. Truly, the day everything changed.

I went to a 3:20pm OB appointment two days before her due date, thinking I was in labor, but agreeing with the doctor that the baby probably would wait for the appointed day. Three hours later, before the doctor could get to the room, Abigail Faith blazed into our lives, painting them pink (and purple!) So blessedly shocked to receive a daughter, a sister, a granddaughter (the one and only on my side.) Our world was rosy without the glasses.

5/3/04 -- The date that sometimes eclipses the joy of our August surprise. Recalling the tears when we first held her, the utter disbelief at the pink pom-pom on her cap, often leads to a creeping dread because we "know how it all turned out." We didn't get to keep our little spitfire, not the way we had hoped. But looking back now, still without the glasses, the changes in Abbie's life don't steal the joy she brings, the rosy hue she spreads, and the abiding gratitude we have for the gift God gave us in her.

Today we celebrated her birth and her life quietly at home. I realized that trying to make her birthday seem "normal" by having a typical seventh birthday to-do would simply overwhelm her. Instead we chose to just have two girls who know Abbie well come over for a Girl's Day. I may be the girl who had the most fun!! We created paper flowers for a mobile for Abbie's room, and made bracelets.





Before she even started on her own, Keiko said, "I'm going to make Abbie's first!" What a tender heart... She spelled out Abbie's name and added her trademark, the ladybug.



Abbie was enjoying it all, but tired towards the end of the projects. As she drifted toward a nap I said, "Abbie, it's a good plan to sleep now and rest up for opening presents." "YES!!" came the voice from her switch, and her eyes flew wide open at hearing the P-word.

She actually provided a lot of laughs through her strategic switch usage, particularly as I was reading the titles of books she'd received as presents. I came to "Is Your Mama a Llama?" Immediately, "YES!!" rang out again.

As I said, there were no tears this day, but I came dangerously close when I opened this card.






This verse on this card was an Abbie verse before I knew she was an Abbie. You see, I was perfectly happy being the mother of four sons, and didn't have a deep longing for a daughter...until we decided we were probably done having children. Then a pink stake was driven deep into my heart, and we began researching adoption, figuring that we weren't any good at making girls. As those of you who've adopted know, it is not a simple process. It was stressful, exciting, scary, and sometimes led to tense discussions when I would push and Ray would not move as quickly as I wanted. In the midst of this a verse came that basically told me to chill out and get my priorities straight. The next month I was pregnant, so I knew this baby, whoever he or she would be, was an answer to Psalm 37:4 "Delight yourself in the Lord, and He will give you the desires of your heart." Our friends didn't know this story when they picked out the card, so it was just another wink from God reminding me that He, too, remembers our journey together.

I wanted to get a cake Abbie could enjoy, so I was planning on picking up an ice cream cake this morning. Then, her nurse, Rae, arrived toting a beautiful, absolutely perfect cake she'd made for Abbie. What an angel!! Layers of moist Devil's Food cake, chocolate pudding and whipped cream made Abbie's lips smack (and mine, too!) I am never able to adequately explain how overwhelmed I am by the kindess of those around us, with this being yet another example.





Upon opening presents a theme appeared: Abbie the Schoolgirl.






She got lots of art supplies and many books, along with a DVD learn-to-read program. I'm excited for her, and must also admit how nice it is to give her something beyond toddler manipulatives and light-up toys. Every time I challenge her, she exceeds my expectations. Last night I wanted to "teach" her the numbers one through five. A few minutes of work with her switch made it clear I am once again lagging behind, as she knows them cold. So, we are going to be fingerpainting and flashcarding our way through first grade this year!

The boys were insistent that Abbie needed to wear all the princess regalia, so we added her new sunglasses for the finishing touch. Here she is as the Queen of Accessories:



The pink pom-pom has been replaced by a tiara, and she no longer fits in the crook of Daddy's arm, but our little girl remains the joy of her family and a light in the world. We pray that God would bless her mightily in this coming year, and thank him profoundly for Miss Abigail Faith.

Everything's Going to be All Right

Last week I decided to go to a grocery store a little further from the house to see if they had one particular flavor of yogurt. This gave me time to turn up the stereo and jam a little, especially when "No One" by Alicia Keys came on.

"People keep talking,
They could say what they like.
But, all I know is,
Everything's gonna be alright."

That last line became a melodic motto as I sang it to Abbie a hundred times during the week. Each time it left my lips, a little off-tune but heartfelt, I was speaking to my own spirit as well. The recognition that truly, one way or another, everything is going to be all right quickened my heart and released me enough from the strain and seriousness to laugh with, play with and truly enjoy Abbie.

After church on Sunday a friend caught up with me from behind, calling out my name rather insistently. Roberta said, "Oh, Tiffany -- those pictures...that one of Abbie in the pool. The only word that keeps coming to me is "Alright!" "Everthing is going to be alright. She is right there, she is OK, and this is all going to be alright!"

I giggled as I told her about the song, and how it still astounds me how God can use one chorus, one word to remind me that He sees, He knows, and He cares.

Yesterday I got an email from Roberta. Without knowing anything about our exchange on Sunday, a friend of hers had been compelled to send her the following devotional.

The Response of Faith
TGIF Today God Is First Volume 1 by Os Hillman
Monday, August 18 2008

..."Everything is all right".... 2 Kings 4:26

The prophet Elisha often would travel through the town of Shunem, and in that town was a well-to-do couple who extended hospitality to him. At first, they simply offered Elisha a meal when he came through town. Then, seeing that Elisha needed a place to stay and study, they built a room for him above their house so that each time he came through town, he had a place to stay. He was so appreciative of their kindness that one day he asked the wife what he could do for her. His servant Gehazi later informed Elisha that the woman was barren and her husband was old. " 'About this time next year,' Elisha said, 'you will hold a son in your arms' " (2 Kings 4:16). A year later the son arrived.

One day the father was working in the field, and the son became ill and died. The woman ran to meet Elisha to inform him. When Elisha asked what was wrong, she did not panic and react in fear. Her response to Elisha seemed almost unnatural. "Everything is all right," she said. Elisha went to the boy and raised him from the dead. It was a glorious miracle. (See Second Kings 4.)

Faith looks at situations through God's eyes, not the eyes of our limited understanding. This woman did not panic, for she knew something more than the current circumstance. Faith does not panic, but realizes that what looks like devastating circumstances may be God's plan to bring glory to Himself by demonstrating His power. When Jesus appeared on the water to the disciples in the middle of the night, they exclaimed, "It's a ghost!" (see Mt. 14:26) First appearances can bring great fear upon us even to the point of paralyzing us. Find the Lord in your circumstance today. Exercise your faith today and trust Him for His outcome in the situation.

I just had to giggle again.

I think this trio of messages was the perfect lead-up to scheduling Abbie's surgery, which we did yesterday. We've set it for September 29. This will give us a couple of extra weeks to work with the neurologist to get her tone as under control as we possibly can.

Abbie's song continues, more beautifully every day, and you know how each chorus ends.

Brothers' Love

As many of you know, my sister, Tara, is a very gifted professional photographer. She took these pictures during her visit to Hawaii back in February, but we finally had a chance to go through them at her house in Seattle last week. I thought that they were too good not to share, even if they are six months old. True love never ages....

Back From Vacation

We've been missing in action for a great reason. At the end of July our family embarked on our first true vacation in seven years, heading to the Cascade Mountains in Washington state. Ray put in weeks of planning to coordinate all the details with what Abbie would need, and his work paid off in spades. The trip could not have gone any better or been any more enjoyable for us.

Because we wanted a direct flight to Seattle we had to fly on Hawaiian, the only catch was, they don't offer oxygen on their flights. This was a hurdle since the only other time we've taken Abbie to the mainland, she needed up to four liters during the flight. To get around this we rented a tiny little oxygen concentrator, which worked brilliantly and quietly, and which Abbie had no need of! She did awesome during the flight, praise God! I was so proud of her.

The next eight days were filled with fresh mountain air, sunshine, swims in the pool and hot tub, and lots and lots of time spent lying in front of the fireplace...Abbie's absolute favorite thing! There are so many of you in the Northwest that I would have loved to have seen while we were there, but we really wanted to give all of ourselves to the boys during this vacation. I hope to catch up with you next time, since we are planning many return trips to this destination!



What, or rather, who, made this trip so incredible for all of us was Genevieve. She accompanied us so that we could enjoy being together as a family, but then still be able to do things like take the boys horseback riding. She is truly our angel, and so beloved by Abbie.



Snapshot memories are the 2-hour trail ride through the forest to Pete Lake, framed by mountains with snow remaining on them.


Having my whole family together for a wonderful dinner. The boys staying up too late to play cards together. Seeing my nephews ride their bikes, clothing optional. The boys learning how to fish, and catching their first ones. Being silly with friends good enough not to care.





The kindness of strangers: a woman who, having heard Abbie's story while we were in the hottub, stopped me in the lockerroom to pray for her and our family; the police officer who let us park at the curb while we checked in for the return flight (for 40 minutes!!).

I don't think any of us realized how much we needed this -- to just get away from every appointment, meeting, practice, shift and phone call, and really enjoy each other. What a tremendous blessing!

Meanwhile, we continue to work with Abbie's new neurologist to begin treating her dystonia. He touched base with me while we were away and asked me to double her Baclofen dosage. She is SOOO happy, so much more relaxed and very, very "with it". Her communication has been very quick with her switch, which has eased my concerns about her being too drugged. I'm so grateful to know that when we reach the point with Baclofen, as we have in the past, where Abbie gets worse, it will just mean it's time to start the drug (Artane) to treat the dystonia, rather than meaning that we're just stuck with no solutions.

I am hoping to hear from her orthopedist tomorrow to set a surgery date. I am feeling very positive about this, as we are now dealing with the underlying cause of the subluxations, so that after recovery Abbie will have a fresh start, with a minimized risk of ending up right back in this same position down the road. She is looking so healthy and strong, interacting so much and so appropriately, I am just filled with confidence and faith that she is going to come through the surgery very, very well. But, as always, we appreciate your continued prayers as we prepare for the day.

Thanking the Paver

As I mentioned in my last update, I spent a good part of Friday very upset that Abbie's dystonia diagnosis had been delayed so long, with such challenging consequences. But, by Saturday morning I was doing better at focusing on what could be very positive outcomes for Abbie with appropriate treatment.

We went to our normal speech group, made up of a few families who we've been with for several years. I was excitedly telling Lisa, Abbie's speech therapist, about the new diagnosis and the hope that Abbie would gain more movement. She grinned and said, "When Glenn gets here, talk to him about dystonia."

Glenn is the father of Shari, a little girl about Abbie's age who is using a touch screen computer to communicate. I've watched her blossom over the last year or so, gaining enough motor control to really start using her device. So often, while watching Shari, I've thought, "If Abbie could even just move that much!!"

I told Glenn we'd seen Dr. Y the day before and Abbie had been diagnosed with dystonia. He started laughing and said...let me tell you a story...

They took Shari to the Lucille Packard Center at Stanford 3 years ago. A bunch of tests were run, and the specialist said, "She actually has two things going on." (That sounds familiar!) They did a test which amplified the sounds of Shari's muscles, and showed Glenn that muscles affected by spasticity sound different than muscles affected by dystonia. There was no doubt Shari had both. They had an answer, but getting treatment was a whole different story.

Once home in Hawaii, they worked for 18 months to get Shari's neurologist to believe she had dystonia, to do his own research, and to finally be willing to treat her for it. They got started 18 months ago, so it turns out, all the wonderful changes I've seen in Shari have been a result of getting her dystonia treated. It just so happens that Shari's neurologist is Dr. Y --- SHE'S the reason he knows about dystonia, picked it up right away in Abbie, and is now willing to jump right into treatment. So...to Glenn, Dayna and Shari...thanks for being our road crew on this one, and paving the way for Abbie!

I am just amazed sometimes at how small our world is, and am now even more excited about what proper treatment could do for Abbie in the long term. She is just so darn smart -- she learned "left" and "right" in her speech session on Saturday. Her silly mom has been telling her to pull the switch "to the middle" and "to the outside". The wonderful student-therapist thought "right" and "left" would be more appropriate and useful, so she made up flashcards and cued Abbie with movement and toys. She picked it right up. So, if we can get that intellect paired with a more cooperative body...watch out world!! Abbie is going to have a lot to say!

A Mystery Solved?

Today we visited a new neurologist, to discuss him managing the Baclofen pump for Abbie. We spent an hour talking, and spent only a minute or two on the pump...just long enough to agree that it is not the solution for Abbie. The first portion of that hour challenged me greatly, as we looked in depth at both of Abbie's MRIs, one right after her injury, and one from a few months ago. ( I must give a disclaimer up front that there may be too much info in this update for some, but we've learned something so important today that I want to share it in enough detail for other brain injury families.)

We've never had an indepth explanation of the injured areas, so I really valued the time Dr. Y. spent going structure by structure. It broke my heart, and I had a decision to make. I could either look at this very devastated brain and sink into despair about what may never be, or I could look at the images with reverence and complete awe, wondering how Abbie could have survived, and how she can possibly be doing what she is doing these days.

There is not one area in her brain that is untouched by her injury. Even her brainstem has evidence of damage and is not the normal shape. The ventricles are enormous, now filled with fluid to make up for tissue that has been lost. The Dr. said a few times, "This is chronic, this is not going to change or get better." Thankfully, he was kind and I knew he was on Abbie's side, so that didn't hurt as badly as it could have. And, I have learned to trust in Abbie and in God more than films and prognoses.

Things got very interesting however, when Dr. Y. said, "Looking at these images, I actually think Abbie has two different things going on with her muscles. She obviously has spasticity, but underlying that is a movement disorder, called dystonia, where the muscles fight each other instead of one contracting and one relaxing. When you give her something like baclofen or tizanidine, it works for a short while, but then unmasks the underlying dystonia, so then things get even worse than they were. My mouth was agape, I am sure, because that's EXACTLY what we saw in Abbie when we tried these drugs again after three years of not using them. No one could explain why a drug that was supposed to help actually made her tighter....until today.

He told us all this while Abbie was in the hall, so she wouldn't have to hear the discussion. As soon as I wheeled her in, he took a look at her hands and called it "classic dystonia." Most people who hold their thumbs on their palms (cortical fisting) pull their hands inward. Abbie's have always been flexed up. He then looked at her feet and said the same thing...the outward rotation and the position she holds them in are hallmarks of dystonia.

The great news is that there is a medication to help with this problem! So , the plan is to take her off Tizanidine, put her back on Baclofen, titrate up to a good dose, and then add Artane for the dystonia. Using this method he gets results equal to those of the pumps he's implanted, so he prefers not to do something invasive, and incur all the risks of having an implant, if we can stick with oral meds. I am VERY happy to go along with that line of thinking!

I am comforted to finally have an answer to my question of "WHY?" about her hips. I was so frustrated with myself for allowing her hips to dislocate when I knew in my heart it could have been avoided. I thought I should've had her standing sooner and more often (true), that we could've done some things differently in the first year (true), but now I realize those things wouldn't have compensated for the fact that Abbie had untreated dystonia pulling on her femurs, that was actually heightened by baclofen. Her hips DID NOT have to dislocate and deform, if the dystonia would have been properly diagnosed and treated early on. You can probably envision the tears of rage, disappointment, and sadness that I've shed today. We seem to always have to learn everything the hard way, taking the longest route possible. So, I am hoping that Abbie's story may help other families who are perhaps dealing with some of these same issues.

What I am holding on to , as the despair and anger try to cross the moat, is that now we can help Abbie. There is hope that we can make her more comfortable and more able to move. She doesn't need to walk for her quality of life to improve dramatically...enough arm and hand movement for her to work a complex communication device, better coordination with her eyes to allow her to see well, using her tongue well enough to eat again...these would be huge, and I think they may be realistic. Just knowing that we only have one surgery on the horizon and not two lowers my shoulders at least two inches.

When my grasp slipped today, the rope of God's love, tossed out by a caring woman, rescued me. I ran into Dawn at the elevators on Monday, and she said she'd recently been thinking of Abbie and I as she did her Bible study. (How she said it was too humbling and overwhelming to put in print.) But, she laughed saying she'd intended to write me a card, had gotten it out, and then not sent it. Boy, could I relate.

Well, today, tears streaming down, I saw an envelope on the counter that had arrived yesterday. I'd not had a chance to open it, and without a return address I had no clue who it was from. Turns out, Dawn decided to send that card after all. Ray asked me to read it aloud, so in halting gasps I said, "Thank you Lord Jesus for teaching us to REMAIN, to ENDURE, and in the end, TO FINISH." She wrote a wonderful note inside and then said, "I close by claiming this scripture for all of you, and especially Abbie, 'What is faith? it is the confident assurance that what we hope for is going to happen. It is the evidence of things we cannot yet see."

The verse that gave us Abbie's middle name. I almost couldn't bear it. God was reaching right down into my brokenness and saying "Remember!! Remember Who I am. Remember how I care for you, how I love Abbie. Do not faint. Do not lose your vision because it is not yet in sight. Remember Me."

Thank you, all of you, who send prayers and thoughts that may not arrive in the mailbox, but rescue us nonetheless. I rejoice in the fact that we have a Father who gives us beauty for ashes. Looking at those images, that was all I could think...these are ashes, Lord...we trust you for the beauty.

Tooting the Horn

I am naturally inclined to use sarcasm and humor to defuse situations that are not at all funny. Sometimes that's a healthy thing, but during this journey I've found that those tendencies predispose one to becoming cynical. So often it has been people who have broken my heart, frustrated me to tears, and made me question whether they could get a 2-for-1 deal in Oz, so that they could find a heart and a brain! While I regret the areas of callous in my spirit, these challenges have also made the great people shine brilliantly in comparison.

I mentioned one, Susan, in my last update. But, I must toot the Horn of Appreciation in honor of her again. I received an amazing letter from her, as a follow up to our meeting. She took what could've been an administrative, dry, "check-the-block" correspondence, and turned it into a keepsake blessing. She started out, " Thank you for allowing me to visit with you and Abbie yesterday. She is a remarkable person, just like her mom." (OK, so flattery certainly doesn't hurt!) But, then she continued, "Your update on Abbie's progress was very exciting" and went on to detail standards that Abbie currently meets. She ended the letter with, "Finally, I want to acknowledge that the love and support you put into Abbie's ongoing recovery is remarkable. Enjoy the little packages of success she delivers. While they may not arrive often, they are certainly a delight to receive and enjoy with the entire family." Wow. This woman should be giving workshops to professionals on how to build relationships with families!!

Today we were visited by the school speech therapist. She is new this year, so had never met Abbie. I could not have asked for better timing! Abbie was just waking from a 2 hour post-Maria nap when Janelle arrived. I gave Abbie her switch, and she was off to the races. Over and over what I heard was, "She has so much potential!!" Janelle has worked with children who use communication devices, so we had a very fruitful conversation about how we can use them to support Abbie's academic progress. I am so encouraged to have team members who I feel can really contribute to moving Abbie to the next level!

Later in the car I was thinking, "We knew it. We KNEW it. We knew it all along!! We knew Abbie had this potential." I was grinning, laughing and giving myself mental high fives. Then I stopped. "Awwww, come on..be honest, " I told myself. "We didn't KNOW anything. What we did was listen. We listened when God reassured us in the darkest hours that all would be well. We trusted when He reminded us He had a plan. And even these things were not of us, but were gifts of amazing grace. So, I'm still giving high fives about all this business, but it's with hands raised to Heaven, to give the credit where it's due.

Tomorrow's the IEP meeting, and Friday we'll meet with the neurologist about the baclofen pump, and with Abbie's case manager, so it's a busy "Abbie Week". I am hoping that I will be tooting the horn many more times! God Bless!!

The Hip Verdict

Just want to give you an update about Abbie's visit to the orthopedic surgeon this afternoon.

God is so good...the news today wasn't, but He is. I absolutely love the doc we saw today (Dr. B.), because he's a skilled surgeon, is extremely empathetic and sees Abbie as a person, not a case. He examined her, noting her extreme spasticity, and he, Ray and I talked for quite a while about the baclofen pump, the surgery, and the sequencing of these procedures.

Then, he sent Abbie for Xrays, since the last films are a year old.

As soon as he put them up on the light box, I thanked God yet again for Maria. She'd prepared me for this day, because she told me the right hip was out, and it was...completely. Most of the socket is gone on that side. The left side hasn't changed much and is still somewhat in the socket. Dr. B. said, "Wow, whoever that was who told you that the hip was out is very, very good..because I couldn't feel that." I think my smile said, " If you only knew..."

He said, "I don't like it when hips come out forward, like hers are, because they don't want to go back in. This is going to be a challenging surgery." But, you know what....he said that so calmly and gently that it didn't even hurt, it was just a statement of fact, something that we are going to work through.

So, God readied me through Maria, and then God orchestrated things to allow us to have Dr. B do the surgery...since Dr. O., Abbie's Shriner's surgeon, is in Afghanistan through at least Aug. With Abbies' hip completely out, we can't wait around to begin coordination. We love Dr. O, but we are extremely comfortable at Kapiolani, where Abbie has gotten all of her care and continues to receive therapy,and where Dr. B. practices.

Our good friend, Rob, is Dr. B's partner and also an ortho surgeon. In the hallway he pulled me aside and said, "If it was my kid, I would want Bill(Dr. B.) to do it." In a later hallway conversation that included all of us, Dr. B. asked Rob to scrub in and do the surgery with him, and Rob readily agreed. So, Abbie will have BOTH of them...I couldn't ask for more!

The biggest hurdle right now is finding a person or team to manage the baclofen pump after the neurosurgeon implants it. In yet another stroke of providence, the meeting that Ray had to leave the appointment for was attended by a pediatric neurologist who does manage the pumps for patients that already have them. He is not a fan of having them put in, and has some reservations, so we are going to meet with him to hear his viewpoint. Dr. B. is not wild about them either, but as he puts it "I just don't have any other answer for spasticity like Abbie's." I'm pretty convinced that a pump will have benefits for Abbie, that at least in the next 2-3 years will outweigh the potential problems. We'll see..

The crux of the matter, as observed by that wonderful DOE person yesterday, is that Abbie is a smart little girl completely trapped in her body, as Rob also noted today. We are going to have to take some extreme measures to provide her relief and release, but I have faith it will be worth it.

I was so very proud of myself that I made it through the whole appoinment without crying once! I think it's a testament to Dr. B's manner, the trust I have in him, and the comfort level I now have. He didn't sugar-coat anything, but we are ready to face what must be done.

Perhaps we've waited too long to proceed with the surgery, but many things are showing us that perhaps we waited for just the right time. I told Dr. B. that the documented gains Abbie's had in the last 6 months will change the way DOE looks at, and must work with Abbie for the rest of her schooling years. She has shown she is a capable learner and motivated girl. Does that make it worth the changes in her hips? Looking at the films, I have to say, "I don't know", it's a pretty tricky trade-off. We could've saved more structure and not proven who she is on the inside, but perhaps then she could've been a girl with solid hips whose hidden intellect was ignored. In the end, it doesn't matter, because we can only move forward. So, that is what we are going to do, hopefully putting in the pump in August and doing the surgery in September if we get our dream schedule.

We covet your prayers for Abbie's health and strength to get through these things. Please pray for her comfort as well, since that right hip is a source of pain. But, always, please pray with much thanksgiving for how gracious and faithful our Lord is. I see His hand so clearly in the details of today, that I cannot do anything but praise Him and relax into the comfort of His protective grasp. If I can end an update like this with a smile, which I am, it is only a testament to the power of your prayers and the greatness of our God.

Miss Abbie and I have been swimming together in a sea of misery this week. She slept most of the day last Thursday, which was odd, but I thought perhaps all the work we've been doing had just worn her out. That night her fever spiked to 104.3, and our adventure began.

She hasn't been this sick in over two years, so I've gotten a bit spoiled by her good health, forgetting what all-night shifts are like. By Friday evening I could tell that I was not going to get away clean, either. Unfortunately, Abbie's care needs didn't give my body a chance to rest and fight back, and I slipped down the slope to illness.

Her fever remained high all weekend, and I camped out in bed during the day resting up for our nights together. Unfortunately, during the work week the rest of the world didn't get the memo that now my days were my nights, so all chances of sleep evaporated as I answered calls, shuttled kids, and made appointments. But, on the upside, Abbie began to rebound on Monday, and today is fever-free with secretions that are no longer yellow. Mom is bouncing back a bit more slowly, but that's of minor concern compared to Abbie getting healthy again!

Tomorrow is a big day for us, as we visit the orthopedic surgeon we saw for a second opinion last fall. We just found out that Abbie's Shriner's surgeon is deployed to Afghanistan through August...pray for Dr. O.!!! I don't know what that means about timing and logisitics, but we should know more tomorrow. I am in a good place about all this, and surprisingly, it is because of a visit from a Dept. of Education person today.

Susan came today to update Abbie's Individualized Educational Plan (IEP) in preparation for a meeting next week. We first met last fall, and she is the one person who totally "got" Abbie, seeing a smart little girl locked in an uncooperative body. She was THRILLED by the progress Abbie has made with language and reading, and showed me that in some areas Abbie is already meeting the exiting-first-grade standards. She had come up with some terrific goals for Abbie, along with wonderful ideas about how to work towards them -- and mentioned more than once how much potential she sees in Abbie.

I told her about the impending surgery --oops, Matthew has issued an edict that in our house it is not called "surgery" but "the walking helper" to make Abbie feel better about it....so, I told Susan about the Walking Helper, and she said, "Well, you know there is going to be regression..."(boy, do I know and hate that)"BUT, you will be able to get it all back and move on to the next level. It may take longer than you want, but she is going to need to concentrate on healing for a while, and then we can get back to other things." I so appreciated an outlook that is realistic and optimistic simultaneously.

I will try to post by this weekend to let you know what the surgeon has. Before I go, I want to tell you a story of another link in Abbie's chain.

At church a few Sundays ago, at the end of an emotional week, Pastor asked me how I was doing. I knew that lying to a pastor is probably a double no-no, so I was honest by saying that sometimes it gets tough to stay focused on the big picture and not be overwhelmed by fear and grief. He said, "Abbie is helping so many people..." He must've caught the roll of my eye that communicated, "That's swell, but I just want my daughter back." He continued, "Well, let me tell you about one family that Abbie has helped this week." Now he had my attention.

"I have a dear friend from college, Janne, whose beautiful daughter Kate, went with us to the National Championship Game in Jan." (college football...they are all LSU fans, but please, keep reading anyway) Last Saturday, while on the way to a wedding, Kate was in a head-on accident and is in a coma right now. Janne called me on the way to the hospital, before they'd even seen Kate, and I told her a little about Abbie and about the website. She was so thankful, because she said they wouldn't have thought of setting up a website, and it has been so helpful." Somehow, hearing names and imagining faces of one family made any pain I've felt justified and bearable.

I've since been able to correspond with Janne, who along with her husband Charlie and Kate's little sister Sarah continue to be filled with faith and stubborn hope as they brave this horrendous path ...but, I know they would surely be bolstered by visits from some of Abbie's Angels. If you have a moment, please go to www.caringbridge.com and search for "KateCrews" (all one word). If you don't have time to go to the page, please just pray for Kate to breathe well on her own and to start waking up a little more each day. And, thank the Lord for how He redeems every tear and every heartache!

Sacred Gift

This week brought us to some painful conclusions, but God was ever so faithful to bring worthwhile lessons right alongside.

On Monday we went to PT, and I told Lynette, "I think her right hip is all the way out." She checked it and answered, "Although only films could tell us for sure, it does seem that way..but, it seems to be coming forward, which is really strange since hips usually dislocate to the rear."

I, illogically perhaps, feel that as a veteran of this journey, I now should be beyond the grasp of sleep-stealing sadness. But, that night I again felt the heart of the Psalmist who wrote about his "couch swimming with tears." I realized that hip surgery was now not optional, and that most likely Abbie is in pain.

Maria came to see Abbie the next morning, and I told her of my suspicions about the hip. As she unfastened Abbie's diapers to take a look, her eyes welled with tears. It was obvious that Abbie's right hip looked different, and she said, "but it has come forward, and that is so strange." She worked on Abbie for three hours, and was able to get the femur back into the socket. So, it looked much better, and it seemed that Abbie felt much better. But, it was just a temporary solution. Abbie's hip problems are being caused by a misalignment of her knee joints as a result of the tension of some muscles on the outside of her leg and the atrophy of those same muscles on the inside of her leg. Maria agreed, after hearing about the need to reconstruct the right hip socket, that it is time to do the surgery, and to get the baclofen pump.

Although it hurt to hear it, in some ways it was the validation I needed, to have someone who has tried so valiantly to help Abbie avoid surgery say she needs it. We must do it not only to help her today, but to help her as she grows since growth will only compound her current challenges.

Maria responded to my regrets about waiting for the surgery by saying, "I think you've waited for just the right time. She is SO much stronger now than when I met her in January. She is in a much different place." I later reflected on the fact that since we delayed the surgery in late November, Abbie has proven to the world she can read...that is such a precious accomplishment, and will be concrete proof to whichever professionals work with us through this process that not only is she "in there", but that she is a a very smart little girl who merits their respect and compassion.

We will begin making phone calls tomorrow morning to set everything in motion. Please, pray mightily for our wisdom, for the right team, and for Abbie's strength and comfort. I must selfishly ask you to pray that I can stay focused on the possibilities of a great outcome, and not be emotionally derailed by the enormity of the surgery or the difficulty of the rehabilitation.

God's already begun a work in that regard. On Wednesday I was marvelling at the ingenuity, daring and precision of the rescue of the FARC hostages in Columbia. I thought about them, walking toward the helicopters as hostages, thinking they were just being moved to yet another jungle camp. I wondered how they reacted as they became airborne and the weapons suddenly pointed at their long-time captors, and the false FARC members announced, "We're the Columbian Army. You are free." The weapons of the enemy turned, and gave them freedom. The weapons of the enemy turned.... and gave them freedom.

I rolled that phrase around in my head a hundred times before a hope suddenly emerged from the fearful fog in my mind, that our enemies, the hip surgery and pump, will give Abbie freedom. So, we will walk toward the helicopter (or OR in our case), with that hidden hope in our hearts.

Freedom remained a theme this week, of course. Abbie and I stood at the end of a cul-de-sac and watched a terrific fireworks display. With each "boom" I would whisper "We're free!" I would imagine the fireworks being the initial signal of long-awaited freedom, of a battle finally won. Looking at it anew, as new, made it clear that next to salvation our freedom is the most sacred gift God could ever have bestowed upon us -- how shall we steward it? Driving home I looked at every flag, and wondered how we would feel if each one of them had been thrust into the ground as a defiant proclamation of liberty, rather than as a holiday decoration.

What these reflections stirred in my heart was righteous defiance - knowing that battles hurt, but must be fought when freedom is at stake. And, when it comes to freeing my daughter from the chains that are holding her -- well, is anyone foolish enough to take on a Mama Bear when her cub is at risk? So, one day we will celebrate Abbie's freedom. But, for this day, we commit to doing what we must, come what may, to one day hear, "My name is Abbie. I am free."

Pictures

It's a late hour here, but I finally got some pictures downloaded of Miss Abbie's first real haircut She was such a patient girl, and it turned out wonderfully! Then, there are some from the next day. Sorry there are so many...I couldn't choose one favorite!
All is well here, and I pray the same for you!

Blessing Upon Blessing

I've been walking around with a subtle overwhelmed feeling that comes into sharp focus and monumental proportions as I sit down to write.

I'll just start with last Wednesday. I had recently heard about healing service being held near our home, led by Pastor Dean. He prayed over Abbie in the ICU, although I didn't meet him until a year later. As I listened to the details, I knew we were supposed to go, and I planned our day around it.

What is it about best-laid plans? Ours began to unravel as the nurse scheduled for 8 was not here at 9. As I suspected, she'd gotten into a car accident and was at the hospital. I had planned in time for me to get Abbie ready, and time to get myself ready, but not time to do both simultaneously. At 12:30, already 90 minutes late I loaded Abbie in the van and thought, "If these people are really all about prayer and healing, then they will know that we are right on time."

As I was bustling around and then driving to the church, I began singing, "Enter His gates with thanksgiving in your heart; enter His courts with praise..." over and over again. I didn't know why...short memory and lack of singing skills come to mind...but soon I would laugh at how completely God nodded "yes" to my being right on time.

We arrived at the church to find people scattered through the sanctuary praying and listening to some beautiful music. Abbie and I just sat at the back and caught our breath. A couple minutes passed before Pastor Dean emerged from an office at the back of the church. He strode to the microphone at the front, and simply said, "I was back there praying for a long time, just waiting for the Holy Spirit to come. He gave me one verse over and over...Psalm 100:4 -- Enter His gates with thanksgiving in your heart, enter his courts with praise." I think I surprised the meditative people in there with my gasp and laugh.

I took Abbie to the front to be prayed for by a small group of people. My eyes locked with one woman's and we both grinned at the same time. She was an OT who worked with Abbie in the ICU, and was the first staff member to come by, off-shift, pull the curtain and say, "Can I pray over your daughter with you?" What a sweet reunion as she marveled at Abbie's growth and change. The prayers for her were powerful and yet tender. I was so thankful! Then, a small Japanese grandpa looked at me with the kindest eyes and said, "I think we need to pray for Abbie's mom, too!" At light-speed I consented and was bathed in the overwhelming love and presence of God. Whew!

We didn't have a nurse scheduled for Thursday, but since Wednesday had fallen through, the agency found a new nurse at the last minute, "But," they said, "She can't lift Abbie." Oh, brother...why send someone that can't lift? The answer to THAT one came within 5 minute's of Star's arrival. I realized I knew her from seeing her at the hospital with Caleb, and had noticed that it seemed like she had had a trach at some point. I asked her about this and she said, "Yes, and a G-tube too." Four years earlier she'd spent 2 months on a ventilator, fighting a blood infection secondary to lupus. Her right hip had been affected, which is why her lifting was limited. I walked into the room later to find Abbie and Star painting, coloring, and making a Father's Day Card. I told her how glad I was to see this, and Star replied, "I know what it is to be in bed and be totally bored." She also could tell me what is was like to be suctioned, if a G-tube is uncomfortable, and how hard therapy can be sometimes. What a tremendous gift of insight and empathy she has, and how tremendously blessed we were by her sharing it with us! BTW...the Father's Day Card was the hit of the day. All the tools in the world couldn't compare to a paper card painted by Abbie. Look for it on Ray's office wall!

And last, but not least and not the most recent: last Monday we cut almost a foot of hair from Abbie's mane. The week prior I had been combing her hair and noticed that it is coming in very light at the roots in the front. Strange, but it took me back in time to her babyfine, blonde hair that framed her rascal face. As I was brushing it I felt God say, "When this color is hers again, she will be yours again." My first instinct was to shave her head and proclaim, "Done!" My second instinct was to hide the clippers. But, I did begin to consider cutting her hair.

The next day Maria came to work with Abbie, and one of the first things she said was, "All this hair is really weighing her down, and pulling it up so tightly all the time is not good for her. Have you thought about cutting it?" Well, as a matter of fact...

So, I had Tirzah, the woman who cuts my hair, come to the house. Abbie was a CHAMP and sat still for 20 minutes. Although it seems like she grew up about three years in those twenty minutes, I am tickled with how it turned out. What I wouldn't give for curls like hers!

So, the boys are all healed from our bee misadventures, Abbie is looking like a sassy big girl, and the summer sun is shining while the Morning Star lights each and every moment. God bless!

Buzzing

Many things around here are buzzing...new knowledge I am trying to cram into my brain and then hold on to, new ideas to help Abbie, and then...literally, bees.

I've been delayed a few (more) days from posting because RJ and Kyle have required my OJT-nursing skills. We were at a friend's house Saturday evening, preparing to share a relaxing meal and unwind. Most of the kids had gone out the back gate and were hiking the ridge right behind the house. Matt beckoned me up to the second floor of the kids' fort to take pictures of the hikers. Through my lens, I saw Kyle rip his shirt off and start swinging it madly. In that second between seeing it, and figuring out what was going on, I saw RJ pinned down by the swarm of bees that Kyle was attempting to get away from.

Because the bees were attacking his face, RJ had to close his eyes, which made it impossible for him to move down the steep slope. Kyle, also being attacked, could not reach him. I was screaming for all I was worth, and never have I felt so utterly helpless.

We eventually got him down and right into a cold shower. We began getting the stingers and live bees out of his hair and off his body. I stopped counting stingers on his head when we reached 50. There were at least 20 elsewhere on his body. His pain was unbelievable and unstoppable. The pediatrician told us to take him to the ER because of the number of stings. As I was getting stingers out, he told me, "Mom, I didn't think I was going to be able to get down. I thought I was going to die up there." That broke my heart too much to tell him that I'd had the same thoughts.

The ER had the I.V. prepped before we got there because they'd assumed RJ would look like a basketball-head upon arrival. Amazingly , he didn't, with the major effect being repetitive vomiting, which helped him get all the toxin out. He was fairly calm until the doc mentioned the I.V., at which point he screamed again. Thank goodness for sublingual medicine and a flexible doctor!

Unfortunately, Kyle got lost in the rush to help RJ. Walking around saying, "I'm fine", he convinced us that his measly 10 stings were nothing to worry about. Alas, he was the one to awake the next day with an eye swollen shut and a hand that looked like a water balloon.

Just another day in our life....

The bees buzzing in my head are the friendly kind, and I am grateful, just overwhelmed. Abbie has required a change of diet recently, which has prompted a whole new round of nutrition research. Things just seem to sink in at different times, because it's impossible to take it all in at once. This iteration has focused on enzymes. I had been giving her Ox Bile for quite a while, but recently discovered that most of it is destroyed in the stomach, which is why it comes in capsules that carry it to the small intestine (which I, of course, open and discard.) Hmmm. What to do?

Enter my favorite kind of author...another mom! Karen DeFelice has written a few wonderful books about enzymes, gut function and neurological issues. If you are a caregiver, I HIGHLY suggest her books. The one I read is "Enzymes: Go With Your Gut." She has done what she writes about with her own children. So, Abbie and I are adventuring down this road together now. Mrs. DeFelice included a "Go Low and Slow" approach for introducing enzymes, most likely targeted for impatient mothers like me, so I haven't even started all of the ones I am curious about. I will keep you posted on what we see.

Last week I was able to spend a couple of days in an intensive anatomy class, taught by a PhD anatomist. I learned so incredibly much about the brain, and what a miracle of architecture and engineering the human body is. But, we also had some interesting side conversations.

The professor related the incident that sparked his interest in neuronal research, recalling taking his son to see a showing of Star Wars that was delayed by projector problems. When the theater was at last quiet and dark, a young boy using a walker entered. There was one wheel that went "squeak....squeak...squeak." But, as the boy noticed the movie starting, the wheel went "squeaksqueaksqueak" as he ran to his seat. Finding his row, he dove for the seat and let the walker just roll to the front of the theater. The professor was impressed by the fact that this boy, with an obvious neurological deficit, was living his life full-steam, and resolved to put his energies toward figuring out how to help kids like him.

His research has included attempting to grow neurons in the lab. Not only did they grow, he said they "grew like crazy!" He, like so many others, is convinced that it's the environment the brain is in after injury that limits recovery, not the brain's capabilities. The challenge now is figuring out the characteristics of a post-injury environment that tell the neurons not to grow.

We know one of them is structural misalignment. I was stunned to see how perfectly each lobe of the brain, and the brain stem fit into custom-molded parts of the sphenoid bone. The first time we worked with Maria, the misplacement of Abbie's occipital lobes was her primary concern. We have seen tremendous changes since beginning this work, and I think returning the structures to their proper places is a big contributor to the success so far.

One other inhibitor is a protein appropriately named "Nogo." Remediating the action of this protein may hold promise for spinal cord and brain injury survivors. While I was researching it last night, I hit upon a link that was an answer to my prayers. www.cnsfoundation.org is the website for the Children's Neurobiologial Solutions Foundation. I realized that I had found kindred spirits as I read "Brain repair and regeneration are possible!" They have assembled an impressive Scientific Committee, with researchers from institutions like Harvard and Johns Hopkins, and are focused on FIXING brains, not working around limitations of injured ones. There is a parent group there, so I wanted to pass this link on to all the families like ours who still, and will continue to believe in solutions and recovery!

Abbie continues to teach us daily. And, along with the lessons, she freely gives love, smiles and joy. Today, after reading "Love You Forever" for the gazillionth time, I asked her what kind of house she was going to have when she grew up and moved into one of her own. She was very excited by this conversation, but remained pretty ambivalent about house features until I got to "fireplace." She about jumped out of bed! So, I guess she is willing to live in a tent as long as it has a fireplace and people who love her!

I pray your summer is off to a wonderful start -- can it really be June already??