Being thankful each day

Thanksgiving dawned and brought a knot to my stomach.

I was nervous about how Abbie would handle her first outing in her wheelchair since the surgery. Ray, Kyle, RJ, and Matt would be leaving for Ohio directly after dinner to attend Ray's grandmother's funeral..a mom's mind always races with "what ifs" when her children and husband board a plane without her. And, then, there was just the pain a holiday always brings - -a concrete marker of just how long we've been at this...praying, hoping, working, and a lot of days spent just hanging in there.

I was starting to get bogged down in this muddle of emotions and tears were closing in when Ray called from the other room, "Kevin is here!!" Our good friend and his wife recently had a baby, so I hoped they'd come for a visit. Hurrying into the room I said, "Where's the baby??" Kevin replied, "No baby today, but my pick-up's outside...go pick out your Christmas tree."

My mind tried to switch from thoughts of little toes to green boughs, but I had to ask him to repeat what he'd said, while Ray (who was in on this) just grinned. Kevin walked me outside to see five, huge Noble Fir trees in his truck. NOW tears filled my eyes as the scent of Christmas filled my nose. I'm an Oregon girl who's lived with an artificial tree for 12 years, ever since moving to North Pole, Alaska and finding out, ironically enough, they have to ship in trees from Oregon, making them an expensive luxury.

I was so moved by Kevin's generosity, and the thought of having a real tree, that I couldn't really speak much the rest of time he was there. But, as I thought about it later, it seems so incredibly fitting for Christmas. As I was about to break, unexpectedly, in a way I couldn't have imagined, a free gift arrived..a gift of life...just a tree, but so much more.

I was on such a high that when friends called suggesting we meet them at a beach club in the afternoon I thought, "Sure! Why not try out Abbie in her chair before dinner!!" It was a postcard-worthy day..sapphire seas meeting a turquoise sky, balmy breezes -- but not even thoughts of my waiting tree could bolster my heart. As we arrived we found out the other two families had a great spot, across the sand where we couldn't wheel Abbie. So, we all sat at the snack bar instead. Then, they all went to the roof to play volleyball -- I couldn't get Abbie up there, so I remained seated talking with my sweet friend, Loan. But, I was jealous...of parents who could take their kids out onto the sand, into the waves, up to the courts

Abbie was fussing, so I got her onto my lap to feed her. An hour of feeling sorry for myself elapsed before Ray came down to lend me his eyes. "Hey! Look at her sitting so comfortably on your lap, with those beautiful knees!!"

He was right. I was holding Abbie like all those "normal" moms I'd been thinking about. She sat with her back against my chest, knees folding right over mine. I didn't need any pillows for support or positioning for the first time in a very long time. Sweet indeed.

We got Abbie home and changed into her pretty Thanksgiving dress (pics are in Kyle's camera, in Ohio...) She slept through much of dinner, which was great for all of us. After getting most of the family off to the airport, Chase and I brought her home, changed her again and then walked over to a friend's house where we stayed, talking and laughing, until midnight.

As I look back at that day one constant pops out: friends. Kevin bringing the tree, Ray (my best friend) helping me to see, and the Arce and Jaegger families who helped me smile instead of cry. What in the world would I do without all my faithful friends...and I mean those of you who only read, who think you are "lurkers" here...your hearts are known to mine, even if your names aren't!

The rest of this long weekend has pretty much been lost in a blur of sickness. Abbie is struggling with vomiting, diarrhea, and high temps. I've been alternating between caring for her and trying to get better myself. Independently, Chase has decorated our house, inside and out, for Christmas in an amazing manner! I am going to have to take notes, since this will be my last year to have him do this.

I don't think I've mentioned that he has received a 4-year Army ROTC scholarship, and has decided to attend Santa Clara University next fall. Ray and I are both ROTC grads, and had never mentioned it to him as an option. As I told Chase when he initially raised it, "I'm not an officer anymore, I am a mom...how about the Air Force??" So, while I am terrifically proud of him, the reality of this being a year of "lasts" is beginning to set in. I also think about how he, and each of the boys, will keep a relationship with Abbie after they go away to school. I am comforted by illustrations I've received lately that remind me that family ties always remain, no matter distance or time.

I suppose one of the heartaches this week of not being a "normal" family was not having the whole family go to Ohio for Ray's grandmother's funeral. She was a precious woman who never, ever missed sending a card for birthdays, holidays or events. I so wished that I could have been there to express my appreciation and love to her family -- if you are reading this, know that my heart was there with you, and my tears are falling just typing this.

To end this on a happy note, let me share one funny story Ray related to me today. RJ and Matt are tickled to have the chance to play in snow. Today, at their great-grandfather's house a snowball fight quickly escalated into all-out wrestling in the snow. However, they had forgotten one tiny, but very important detail. Great-Grandad has a dog. As they entered the house, "Eau de Fluffy" preceded them. The clothes came off much more quickly than this lesson will leave their minds, I suppose. Rolling in snow is fun, rolling in poop is not.

May you be blessed as the Christmas lights go up...the Light of the World has come that we may always know joy, can there be any better reason to be thankful each and every day??

Cast Off Day!!

What a day! We got to see Abbie's new legs revealed, and I made my first iMovie. The quality is not as good on YouTube as it is on my computer, but so goes it. I just wanted some way, other than my words, to share with all of you the joy of today.

As the cutting began, Dr. B. said, "This is going to be like a birth experience."

"Oh, I know!" I replied. "She is going to have brand new legs."

"That's not exactly what I mean..." he answered.

What he DID mean became apparent as soon as we lifted Abbie to remove the worn-out, discolored, junky, old bottom half of the cast. She started howling just like she did when she first entered this world. Wow! "Think about it," said Dr. B. "she has been nice and toasty in the cast. It seems confining to us, but it is supportive and comforting for her. And then, all of a sudden, it's stripped away, the cold air hits her and...voila...new birth experience!"

There is a reason for the gap in the video between taking the top of the cast off and having her seated in the wheelchair ready to go...she needed all hands on deck to try to calm her initial pain and fear. While this has been an exciting day for all of us, it has been a very challenging one for Abbie. Please, if you think of her during the day (or night) pray for pain control and abatement. This is going to be a difficult couple of weeks for her as we get her bottom half moving again.

But, even with all that, I am overwhelmed at the results!! I was playing with her little foot, moving it up and down like any other child's. Genevieve and I were giggling like schoolgirls, in disbelief that these soft, flexible feet belong to Abbie. Her knees are looking up at the ceiling, instead of pointing out to the side, and everything is so beautifully aligned. Her skin is amazing as well -- I was expecting dry and scaly...not a bit. I know we need to take it slow for her sake, but I am just so darn excitied about all the things we will be able to do.

Much more to say, but it's already 1am, and I need to get my winks in while Abbie is sleeping. A triple rainbow outside my front door today was the exclamation point on a day I can only term as "Hope Delivered. Promises Kept!"

The Last Night

Abbie was smiling, even in her sleep, as we told her that this was her last night of sleeping in her cast. 12 hours from now she'll be a tiny wisp of a girl compared to what we've become used to. Her nurse, Dayna, gave her a beautiful mani-pedi today in preparation for the big event...purple, of course!

I am so thankful Genevieve will be the one accompanying me to the hospital tomorrow, because she loves Abbie with all of her heart. We were both giddy as she was leaving tonight, feeling as children do on Christmas Eve. I will be taking the camera and the video camera, as I am so curious about how the process of getting the cast off. If my technical skills allow, I will try to post the video.

Abbie's little body was thinking hard about getting sick the last couple of days. But, we received the "Chest Vest" last Friday, and that helped head off the Yuck Monster before he was firmly established in her chest. For my fellow brain injury families: this is one piece of equipment you should check with your doctor about ordering for you, especially with cold and flu season upon us. I have been extremely impressed with its effectiveness and ability to help Abbie rebound quickly. Abbie LOVES her "bumpy ride" as we call it, and a huge bonus is that after 20 minutes of treatment her arms are like rubber bands -- clear chest, soft arms...I'll take that 2-for-1 any day!

I almost can't believe we're here, at the end of this long-dreaded journey. This time of relative hibernation has been a unexpected blessing -- no therapies, no appointments --life has been pretty simple the last 4 weeks. And, the brilliant way Abbie came through the surgery and recovery has been beyond my wildest hope. Thank you for your continued prayers; we literally feel them.

All hail the end of the Purple Person-Hider, and the full return of Princess Abbie!

Relationships Matter

I would not be a good night-shift employee. I find it almost impossible to sleep during the day, and instead end up watching multiple episodes of "Jon and Kate plus Eight" -- perhaps their life makes me feel like mine is simple. Anyway, the lack of sleep at night coupled with little sleep during the day led to the inevitable crash of my body this week, thus the delay in posting.

Abbie is doing wonderfully as we cruise through this final week with the cast. She will be getting it off on Tuesday morning, 11/18. I told a friend tonight that it is like waiting for a baby to arrive - the last few days drag much more slowly as the anticipation builds. I am just so anxious to SEE those little legs, to be able to massage and stretch them, and to begin this journey of the Fresh Start with her legs.

The previous post was titled "Sweet Day." The day after that I felt like writing one called "Crazy Night." Abbie has decided that she wants to talk and play at night, usually beginning around 2am. She will start talking (Abbie-talk: vocalizing, not words) to me in a sweet little sing-song voice. I lay on the floor and say, "Oh, Abbie - I hear you. I love to hear your voice, but it's sleep time!" This will go on for a few minutes, and then the sweet girl is out the door, with Bossy Girl replacing her. The tone of her voice changes and it's no longer viable for me to stay on the floor. She wants to talk face to face and play. Whoa -- be careful what your pray for. Seeing her smile will always make me smile, but by 3:30am I am begging her to go back to sleep. So, my sleepless nights have not been a burden, but they have been tiring!

I often gird myself by repeating simple little phrases that deal with an area I am trying to strengthen or focus on. When I run I often repeat "I am a finisher" as I try not to whimp out. Lately, as I struggle to prioritize my time the phrase has been "Relationships Matter." This is where I want to invest my energy and attention, and where I am so often distracted by a "to-do list" and other goals. It always strikes me that with the tiniest bit of investment -- 2 little words -- things change.

Last week I saw a cousin, Mark, whom I had not seen since the summer of 1976. We were much shorter then, I didn't dye my hair and he didn't shave. He was here with his wife Brenda and the two oldest of their six children, Savannah and Kassadee because Brenda was competing in the international Sweet Adelines competition. I had no clue what this was all about, and was quickly introduced to a whole new subculture. Wow! Brenda's 150 woman chorus, the Melodeers from Northbrook (Chicago-area) WON, and are the champions of the world when it comes to 4-part harmony. I was also treated to a performance by Brenda's quartet, just for me, in front of the convention center -- I felt like the Queen of England! The best part, though, was having Mark, Brenda and the girls over for dinner, and getting to catch up. Family is a precious thing, and having this string retied after 32 years was more profound than I had suspected it would be. They also gave up beach time on Sunday to come to Matt and RJ's football game before going to the airport. Now, THAT is family!!





Savannah signing in silver ink -- too bad the cast will probably be too stinky to keep!



Family...except for Matt who was at camp.


On Tuesday the Cheshire family, all ten of them, filled Abbie's room with love and music as they sang praise songs accompanied by Dad playing the guitar. With Walt's Austrian roots, they make me think of the Von Trapps. They have been so thoughtful -- there's not a week that goes by that Abbie doesn't get a card, a picture, or a surprise from them. I have never met another family like them, and most likely never will. Genevieve and I were in tears watching them surround Abbie's bed.


(sorry this is a little blurry -- my camera settings were changed by an identity-protected son)



Christa helping Isaac sign Abbie's cast. Christa and Abbie are the same age, and very much cut from the same cloth, so seeing her always gives me a sweet glimpse of who Abbie is on the inside.



If every mother were like Katie, there would probably be peace in the world. She is one of my heroes!

The relationship that matters most to me, of course, is with my Heavenly Father, and even there I have to focus on not letting the time slip by without intentionally building it. There are times, like lately, where I feel a bit adrift and out of routine -- lazy, tired, distracted, all of the above. At times like this I am especially grateful for His grace -- nothing I can do to make Him love me more OR less. What a resting place for my soul. I pray that you also would be finding great joy in the relationships in your life, the people around you, and the Father who loves you without end.

Three days and a wake-up for cast bound Abbie -- Freedom is near!!

Sweet Day

Ray spent the night with his princess last night, which meant that I could spend the day with her refreshed and ready to have some fun. We got out her art supplies and went to town, coloring and writing and using the prettiest stickers. She also wanted to watched her reading program videos, which I welcomed as a chance to sit down for a minute.

At the time she was laying on her left side, so as the words "arms up" and "arms down" came on I watched her raise her right arm and bring it down. At first I thought it was a fluke, but she did it each time the words came. Woo-hoo! In planning for this surgery I had envisioned months, truly - months, of her being kind of zoned out with pain and/or meds, and really regressing in the cognitive skills she has gained. Have I mentioned that thankfully, I am often wrong? (Please don't pass that quote to my husband, though:)!

She is also becoming very good again at using her voice to let us know what she needs, as in "Hellooooo, I am awake over here," and "Thanks for reading to me, I really like this book." The sounds she makes are little sing-song notes now, so sweet.

The last dose of Tylenol she took was yesterday morning, so she is completely off traditional pain meds. I am using a couple of homeopathic remedies (Traumeel and Spascupreel) and running the Biomodulator around the clock, which is keeping her really comfortable. But, I am surprised at how well she is handling the discomfort. We even put her on her tummy a few times today --definitely a two person operation! This gave us a chance to clean her cast and dry her out with my hair dryer set on cool. Her skin is looking great. In fact, the bandaging over the incision where they worked on the adductors (inner thigh muscles) has come off already, so we can see that the scar has closed completely and cleanly. I am hoping that all the ones that we can't see yet look as good.

We are halfway to Cast-Off Day already! I am anxious to see her "new legs" and get to work on moving them again. But, for today I was just so blessed to sit with her, enjoy her being very present, reading and talking and playing and praying. I feel so fortunate that God chose us to be Abbie's family.

HOME!

We got home Tuesday afternoon, and life is immensely easier now that we are all in one place. Transportation was interesting -- I will post some pics of that. But, she grinned at not having to ride in a car seat or wheel chair!

The last couple of weeks is catching up with Ray and I, so I will post more when I'm better rested and more lucid.

Pain control is good - Tylenol once a day, plus homeopathic remedies, she's tolerating her feedings well, and looks absolutely great.

Big Steps, Little Bumps

Sorry for the delay in posting...I've been doing the night shifts, and by the time I get home in the afternoon I am focused exclusively on getting to my bed as quickly as possible!

Abbie continues to look wonderful, blessing us with many smiles and grins. She was especially happy this morning when I turned on her favorite PBS shows, "Sid the Science Guy" and "Super Readers."

She has not had any Tylenol 3 since Saturday, which blows me away. If I were in her position I would have taken up arms to fend off the folks who took out the epidural, let alone taking away all narcotics! She is also completely off oxygen now, and satting 100% most of the time.

So...why is she still in the hospital? Turns out she came down with a urinary tract infection, whis was not unexpected after three days of having a catheter. The challenge is, her infection was caused by a particularly tough bug to treat (pseudomonas). There are not any great oral medication options for this one, so she continues on IV antibiotics.

But, now that we are in a private room it is not bad at all. In fact, it is almost a luxury to still have the extra hands to help. We WILL be coming home tomorrow, however. HURRAH!

We could use your prayers for the next three weeks of being in a cast: no skin break down, complete clearing of the UTI, lungs remaining clear, and ways to keep Abbie entertained and engaged.

May I also ask that you extend prayers for another boy facing the very same surgery on Wednesday? Cade lives in California, and his mom,Lisa, and I have become email pals. I must tell you about Lisa, though. She sent me a note explaining that she recently did her first 1-mile ocean swim race in a long time...life sure changes after brain injury. Anyway, she said that she dedicated the swim to Abbie, and with each stroke thought of and prayed for her. I was brought to tears (not good when reading your Blackberry while driving--just next to the curb, not in traffic:) I know her life is just as challenging as mine, yet she was praying for my girl!! The link to his website is on the left of this update, so hopefully Lisa will update as she is able after the surgery.

I am already anxious to see what Abbie is going to be able to do with these new legs, and pray the time passes quickly. Thanks for cushioning the path with your prayers and care -- what I thought would be a rocky road has been a nice hike instead.

Out of the PICU

Just talked to Ray who said that Abbie is now ensconced in a very comfortable private room, which also has a sleeping bed for me!! The past couple of days have been very smooth. The epidural and foley catheter came out on Thursday, but her pain has been well controlled with Tylenol 3, while Valium has been successful at keeping muscle spasms at bay. She is a bit more sleepy, but I am content to let her rest and recover at this point.

The consensus from the ICU doc, the surgeon, and her pediatricians is that she looks "awesome" today, and we will most likely be heading home on Monday. She is a bit anemic, so they started some extra iron, and didn't feel it was acute enough to require a transfusion.

We were so blessed with incredible nurses in the PICU -- I am always blown away by their competence, compassion, and insight. A very, very special group.

I learned how to change diapers by myself, a mix of contortion and strength..perhaps I'll be ready to join the circus by the time this is over. On second thought, perhaps I already AM in the circus:).

But, this I know: God has once again shown Himself faithful and strong on Abbie's behalf, and in the care of all of us.

Abbie is now on the Wilcox wing, in room 208. So, feel free to visit!

Never a Dull Moment

Abbie had a much more comfortable night last night, but it didn't mean things were boring. I was dozing in the chair next to her bed, when at 4:30am a nurse gently awoke me and said, "I don't mean to alarm you, but it looks like we are going to have to evacuate, because there is a fire."

My response was "Am I dreaming or are you joking? Either way I'm not laughing."

She told me to go look out the window in the break room. OK..no joke, and I was now fully awake, so not a dream either. Orange flames and black smoke emanated from the church preschool situated 20 feet from the back wall of the hospital. I called Ray and said one of the less smart things to say at that hour, "Are you awake?" But, just as I was telling him he may want to come down, not as Abbie's dad but with his CEO hat, the nurses told me we were going to stay.

Daylight showed how much damage the preschool sustained, and how fortunate we were to have not been more affected.




The PICU is on the top floor just behind that tree. The windows you can see on the top floor are the NICU. Obviously, it was a stressful night for the staff!! This picture doesn't show the extent of damage to the preschool, but it sure does show how close it was!

The rest of the morning brought news that changed our plans somewhat. Abbie's left lung is still pretty filled with mucous. It is better than it was yesterday, but the effects of laying flat on her back during that long surgery mean that we will not be going home tomorrow or Friday as we had hoped. In fact, the PICU doc said that we will be staying in the unit until at least Sunday, with some more days after that down on the pediatric floor. Rats. But, the important thing is that Abbie is doing great and looking awesome.

Genevieve is coming up to stay with Abbie in the afternoons so that I can come home and get some rest. I'm always fading into incoherence around noon, so by the time she gets there at 1, I am really looking forward to my bed. This afternoon I went to the van, turned the key and heard "click, click, click." Noooooooo! Ray was in meetings, so I thought I'd go back inside, eat some lunch and keep wait for school to get out so Chase could come get me.

Turns out, I didn't have to wait since I had a "Holy Taxi":) on the way. I ate lunch then went into the hallway where I ran into my pastor, who had just seen Abbie. He was kind enough to give me a ride and make my day by telling me that Abbie woke up while he was talking to her, and was trying to communicate with him with her eyes, her mouth and her voice!

I think her epidural will be turned off, and perhaps even removed by the time I get back tonight. She will be getting Tylenol with codeine through her Gtube instead. I am hoping it will keep her comfortable, but realize it may sedate her a lot more as well.

We continue to be so blessed by your prayers and visits! Please keep praying for pain abatement, and for those lungs to clear. I am realizing I probably need to explain a little better what was done, but I've got to get back.

Here are our purple ballerina legs...beautiful, yes?

Yes and Yes and Yes AMEN!

We're now 24 hours post-op and I am in mild shock at how wonderfully everything has gone. I could not get on the internet in the PICU last night, but wrote some notes on my laptop so I wouldn't forget anything. As I looked back at those notes I realized I had pretty much written an update, which is helpful since I don't have much time right now.

Bottom line up front: Abbie was in surgery for 8 hours, had eleven procedures done: osteotomies on both femurs (they were cut, and pieces removed from each), head of femurs replaced in hip sockets, right hip socket reconstructed with bony material taken from femurs, adductors (inner thigh muscles) released, IT band (on outside of upper leg) released, gluteal muscles released, quadriceps tendons above knee released, peroneal tendons (outside of ankle) release, and achilles tendons released.

The breathing tube had already been removed by the time we saw her in the recovery room, and we were so relieved at how good her color was and how strong she looked. Today they did a chest Xray that was junky on the right side...but is is mucous not pneumonia. Abbie is getting treatments with "The Vest", a band that goes around her chest and thumps her hard enough to shake the whole bed. I cannot imagine what this must feel like with broken bones...but, thankfully she still has the epidural in.

Here's the update I wrote last night:


"First Verse read in PICU…opened to Psalm 18:16-19, while looking for Psalm 20.

“He sent from on high, He took me;
He drew me out of many waters.
He delivered me from my strong enemy
And from those who hated me, for they were too mighty for me.
They confronted me in the day of my calamity,
But the Lord was my stay.
He brought me forth also into a broad place;
He rescued me, because He delighted in me.”

How appropriate for Miss Abbie! For, I know the Lord surely does delight in her, even more than I do, and I am truly amazed by her. He DID rescue her that day. Finding out recently from RJ that she was face up in the pool…looking toward Heaven…I know she was never alone, and that what the enemy meant for evil God has used for so, so much good and glory.

She is overwhelmingly beautiful as I look at her sleeping peacefully, with rosy cheeks. The post-op evidence of trauma I expected to see on her face is not there. Perhaps it will come later when the epidural comes out, but for now she looks just like herself, only heavily accessorized!

I am surprised out how high the cast comes up around her waist. Getting to the G-tube is tricky, and I only hope she doesn’t end up with a sore from the cast compressing the tube onto her body. Purple it is! Bright and bold, regal and royal..and legs positioned like a Chinese gymnast in training…yikes! This is going to be an interesting month (yep, 4 weeks instead of 3) of trying to change diapers and find comfortable positions with this behemoth swaddling her entire lower half.

But…we are through it! We did it, and she came through beautifully! I cannot yet fathom that all the dread we’ve endured for the last three years about this surgery is over! Of course, she is still heavily medicated, and I think there are probably going to be some difficult days ahead, but the truly terrifying part is over! We can finally breathe and look ahead to all the exciting things Abbie will be able to do with flexible legs and strong hips!

I am overwhelmed at the faithfulness, kindness, and perseverance of our friends. Bonnie Sutton praying down the list for 2 hours!!! So many calls and emails. Katie coming for a 2 hour lunch (with Ilisha…nothing like a beautiful baby to make the heart sing)

As I got a really positive update while sitting in the cafeteria, I turned to Katie and said, “There were so many days, sitting in the cafeteria, looking out these windows, when our prayers weren’t answered…it is so great to get YESes today!!’

Another big difference…Abbie complaining loudly in the PICU when her pain got a little out of control. I was so very glad to be with the kid making a commotion! The nights of envy I had, sitting by a silent bedside, listening to other kids recover enough to throw fits, ask for Mommy and popsicles…tonight it is us! That feels soooo good!

How completely blessed we were to have Bill and Rob do the surgery, Alan do the anesthesia, Lynette and Jayna observe (with Lynette talking Abbie to sleep as they put her under.) She was never left alone with strangers, and had the best of the best in every aspect.

ANSWERED prayers still amaze me in their specificity: NO blood transfusion!! Abbie shocked the surgeons at how little blood she lost..”even in places where she should have bled a lot, she didn’t bleed!!” She was extubated before we even saw her, breathing room air before we left the recovery room. NO anesthesia excitement at all during the 8-hour surgery. They are being very aggressive and timely in dealing with pain…keeping Abbie comfortable and me confident. Bill and Rob were very pleased with what they were able to accomplish, and feel the hips went in very well once the adductors were released. 6 weeks from now Abbie and I should be back to our sunrise running date – something we will both look forward to.

Seeing the hearts of her brothers revealed. They ALL insisted on getting up at 4:30am and going with us to the hospital. At first I thought this was a bad idea on a school morning, but I was so thankful they persisted. It was an amazing blessing to have our whole family together, soaking in precious time with Abbie, each praying before they had to leave for school. Having each of them call more than once during the surgery to see how it was going and ask when she would be done. Having them come straight here as soon as she was out, wanting to go the recovery room (not a place for a parade of 6 people). Waiting patiently in the hall and craning their necks for a glimpse each time the door would open. Kisses and “Hey Abbie” as we wheeled her to the elevator; delaying the entry to the PICU so they could catch up and kiss her again. None of us have been in this place with Abbie for a long time (four and half years), so this episode has resurfaced family bonds, loyalty, and affection that sometimes get buried in the daily chaos of a busy household.

The last time we came to the PICU it was also on a Monday. Dr. Chang was the intensivist on duty that Monday as well. Tonight I went to the bathroom next to the waiting room to change clothes and brush my teeth. I looked into that same mirror…the one into which I often silently gazed so long ago, wondering what had happened to my old life, and how I could survive my new one. I didn’t see the same person tonight. You don’t realize changes day by day, especially in yourself. But looking in that mirror that had reflected such grief and bewilderment, tonight I saw joy, calm, and the accumulation of all the lessons we’ve learned, love we’ve received, and wisdom we’ve gained. Tonight, I smiled at that mirror."

So, thank you , thank you, thank you for praying so fervently and specifically -- it had a powerful, documented impact! She will need your continued support in the days and weeks to come, primarily in regards to muscle spasms. When we first saw the surgeons they explained that after the initial post-op pain subsides, muscle spasm could cause pretty extreme pain for up to a month. I answered that the same people who prayed for no blood transfusion would be praying for no muscle spasms!!

I cannot use my cell phone in the PICU, so communication is really limited. I will try to keep the updates timely, however.

We are relieved. We are blessed!!

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!