Here's a good shot of Abbie's three missing teeth. She is already starting to get permanent teeth in their place, which is quite ahead of the schedule kept by our other kids. As they say, she's just the record setter in our family!

Tuesday, 6/27/06
            I could just say that life has been incredibly hectic, and that would be true.  I could say that I haven’t had time to write because of social events, baseball, camping and birthdays, and that would also be true.  But the heart of the matter is that sometimes I have to work through things before I can write about them, because I don’t want to turn Abbie’s site into my personal therapy workshop.
            It’s been a tough a couple of weeks, and there have been points I’ve wondered how much my heart can take.  The seizure issue seems to have abated for now, but for me it has become this monster lurking in the shadows, just waiting to pounce and throw another layer of challenges upon us.
            Abbie had been fighting a diaper rash for a couple months, but recently it became open wounds rather than just a rash.  This prevented us from getting her in the Walkable, and increased her tone markedly.  She was in quite a bit of pain.  Her feet began to have a lot of eversion, or turning outward, and there were times I couldn’t break through the tone to move them into a normal position.  It became difficult for her to wear her foot splints for long periods of time, which is necessary to get the best effect of her recent Botox treatment.  Because she also had wounds on her inner thighs, her legs rotated out to protect this area, exacerbating an issue we were already fighting against.  At the same time, I noticed that she is liking to lean to her right side when she is seated, and became concerned about slumping leading to curvature of the spine.
            There is a relatively new full-body orthotics system called Theratogs that would address each of these issues nicely.  The first time it was submitted for approval it didn’t “make the cut” at the end of the program’s fiscal year.  The second time it was denied outright because it doesn’t yet have it’s own code.  We are in the process of doing a third submission now.  In the meantime, I finally broke down in PT and told Lynette that I feel like Abbie’s body is getting away from me….all her limbs respond very well to  gentle correction and input, but I can’t keep my hands on her feet, legs, abdomen and wrists continually.  I feel overwhelmed at what I need to do to prevent her from developing secondary challenges, like scoliosis or contractures, and I am supremely frustrated with trying to work within a system that confounds even our case manager and puts the needs of the kids last on the list.
            Ah…but….God always inserts the word “but” at critical times, and it’s a good thing!  So, because her wounds precluded the use of the Walkable, we’ve been putting her on a tilt table at PT.  She lays on it, we strap her in, and then we raise the table to a nearly vertical position.  She has done incredibly well at this, and what we have found is that  simple weight-bearing affects her far beyond stretching her heel cords out.  It relaxes her entire body, including her chest and arms.  It has been exciting to see, and we’ve realized that in our focus on the Walkable, and Abbie’s enjoyment of moving down the hall, we may have underestimated the value that simple standing was providing.  The relaxation lasts for the entire day after a standing session, and even her hands are beautifully soft in the evenings.
            At speech last week we were working on matching colors, and when we turned to the yellow page Abbie said, ‘Yow, yow, yow…”  I have learned to give her the benefit of any doubt, so we took that as “yellow” which was a cause for celebration.  She has gotten a few new words this week, but so far they are in Abbie-language and I can’t decipher them yet.  But, they are new strings of sounds repeated intentionally, so hopefully I’ll be able to figure it out soon.
            We went tent camping this weekend for the first time in ten years….and, boy, has the Earth gotten harder in that decade!  Air mattresses are a must in middle age, I suppose.  Abbie did great, and really enjoyed swinging in the hammock watching the trees sway above her.  In the evening we had friends join us for dinner and S’mores.  As much as Abbie loves being around kids, the frustration overwhelms her and eventually she just shuts down.  I watched this happen Saturday night and tried not to be mad at God for what she is missing.  I was internally shouting, “She’s missing her childhood!!”  And heard, “Is she really, and is she the only one?  What about the kids living right now in slavery, in poverty, in hopelessness…what about the kids on the move with their refugee families?  Are you this mad about marshmallows and a campfire?”  Well, yes, I am mad about marshmallows and a campfire, and playing in the sand, and running from the waves, and catching crabs in the dark, but at least I have perspective now….and sometimes that helps.
            And yet again, as has happened so many times…just when I’m sinking in the muck of my heartache, God reached out to me through someone I’ve never met.  This time it was Bryan A., an attorney in Alabama, who took the time to write me an encouraging note.  Talk about timing…and who would ever think that a lawyer could also be an angel??
            Oh!  One note for folks in Hawaii, and those needing a good reason to visit, Dr. Tennant will be here August 17-19.  The evening of 8/17 he will be giving a free lecture, while 8/18-19 will be the training seminar for the Biomodulator.  You know how highly I think of Dr. Tennant and how much the Biomodulator has done…it you are interested in either or both of these sessions (the free lecture requires a reservation because of space) just drop me a line at varasix@aol.com.
            Abbie is well, the family is well, and we just have to keep pushing.  Please pray for endurance and vision for me, and for complete healing for a girl longing to play with her friends!

Monday, 6/12/06
            As some of you may have seen in the guestbook, this Saturday was probably the most stressful day we’ve had with Abbie since her initial discharge.  Around ten in the morning we were getting her ready to go for an outing with her brothers, and I noticed some weird activity.  She would turn her head to the right, it would pulse a few times and then she’d be back to normal.  They started becoming very frequent – every two minutes or so, and the intensity increased to the point where her left leg would lift up during some of the pulsing with her head.  We observed and took careful notes for over an hour, and then finally called her neurologist, Dr. O.
            Dr. O. said that what I described to her sounded like focal seizures.  In  themselves, they are not dangerous, but the type I was seeing can generalize through the whole brain and involve the entire body, which would be dangerous.  At her assessment my out-of-body experience began…the kind where the screaming, crying, scared lunatic exits the body and a calm, rational, trusting person remains to deal with the situation.  She prescribed an emergency medication closely related to valium to stop the waves of seizures.  I had to go to the children’s hospital to get it, and the drive gave me time to calm my breathing and thinking.  This all felt much like a pop-quiz to me.  It was like God saying, “You think you are getting good at this trusting Me thing…well, let’s see if you are right.”
            I have feared seizures since the very beginning.  I didn’t want to have to put her on a drug that would cloud her or make her groggy – that would make it exceptionally easy for outsiders to dismiss her potential.  I was scared about the damage seizures could do to her fragile brain.  And it was another one of “those kind of  kids” labels I didn’t want her to bear.
            I haven’t felt the separation from the world around me as acutely since she was in the PICU – I remember being stunned by a trip to the mall back then, and how idiotic the amount of energy spent deciding between a pink or yellow top seemed.  I walked in a bubble to the pharmacy window and had them explain to me in detail how to give the med, which is delivered rectally through a syringe.  They were also very clear about the indications for a trip to the ER.  My spirit was groaning at this point and the world seemed silent to me.
            I had to stop at Long’s to pick up her Zyrtec on the way home.  As I pulled into the parking lot I knew I had to get this settled in my heart.  I finally just cried and recalled Job’s words, “Though He slay me, yet will I hope in Him.” (Job 13:15)  Through tears I said, “If she needs medication, I trust You; if these seizures generalize, I trust You; if they become so bad that You take her away yet leave the shell of her body here, I trust You and I will love her no matter what.”  And I reaffirmed in my heart that as incredibly much as I love Abbie, I love Christ more.  By the time  I got out of the car I could hear the world again,  I realized it was a sunny day, and I even remembered to pick up dishwasher detergent. 
            I got home to find Abbie resting peacefully in Ray’s arms.  She wasn’t having any more seizures, so I decided to wait and watch.  The medication would’ve knocked her out for eight hours, so I didn’t want to give it if she didn’t need it any more.  That was two days ago, and we haven’t seen any more strange things, praise God!
            Yesterday we took Abbie to church like normal, and she did great.  We then went out to lunch and then to the Pacific Club to play paddle tennis and swim.  She really enjoyed being out with the family and was comfortable all day.  In the evening Ray and I went to a very beautiful and exceedingly special wedding…there was so much love in the families that we felt privileged to be part of the event.  My heart ached for Ray, though through things like the father-of-the-bride speech where the dad talked about how it drove him crazy because he couldn’t always protect his daughter, and through the father-daughter dance to “Butterfly Kisses.”  I pray with all my strength that one day Ray gets to do those things as he gives Abbie away.
            Today was another good day for Abbie, and we even saw some improvements.  As she was laying on her side I put an abacus by her and ran her hands along all the colorful rows of beads.  We counted them, talked about the colors and moved her very relaxed arm back and forth.  After a few times, I told her she could do it by herself.  And she did!  She used to raise her arm with one big heave, and wherever it landed, there it was.  Now, she has much more control and intent.  She was very frustrated at times, and I had to encourage her over her cries, but she kept at it.  She knows when she does a good job, and she was rightfully proud of herself tonight.
            We will most likely be scheduling an EEG this week to see if we can catch anything suspicious going on in Abbie’s brain.  Dr. O. spent a very, very long time on the phone with me on Saturday (we are blessed with amazing physicians…well, amazing people who happen to be physicians).  We talked through the pros-and-cons of all the maintenance medications, and decided that if we do have to start one we will most likely choose Tegretol.  I told Dr. O. of my severe reservations about making Abbie groggy or unresponsive, and she said that wasn’t acceptable to her either.  If that does happen, she said, we would just have to find a different medication.  I feel much better now, knowing that we have common concerns and goals for Abbie.
            Abbie starts her three-times-a-week physical therapy this week.  Her Botox is really kicking in, and I am excited to see what we will be able to accomplish.  I will be sure to keep you posted about the seizures, but also about her strolls down the hall!

Tuesday, June 6th
            I hate it when I let a few days pass between updates, because then there’s so much to write I don’t know where to start and what to leave out.  I guess for today I’ll begin in the present and work backward.  Abbie had a terrific OT session today.  She was sitting in chair, using a spoon to scoop rice.  She was very attentive and concentrated hard on what she was doing.  By the end of the session she could do it by herself!  Several times we helped her bring the empty spoon to her mouth she said, “Hungry!!”  I was happy to see her so engaged and vocal, but wasn’t surprised since she’s been able to say “hungry” for a long time.  However, a couple minutes later she vocalized again, and this time it was definitely something new.  I heard “do it” and Arlene heard “do it myself”.  That would be so fitting for Abbie to say, since “Abbie do it” was her favorite slogan before she was injured.  She also did a great job visually today, really focusing on what she was doing, which was encouraging to see.  Even Arlene mentioned that perhaps we ought to be videotaping the therapy sessions now since Abbie seems to be changing so rapidly.
            This morning I was out helping Chase and Kyle wash my van (we’d forgotten it is silver.)  I came in to get something and Crystal said, “I took a picture of Abbie---she rolled over by herself.”  Abbie is pretty good at rolling from her side to her back, so I assumed that was what happened.  But, Crystal said, “No she started on her back and brought both her arms all the way over…look!”  And there was the photographic evidence of Abbie’s first independent roll from her back.
            Last night the twins had a performance at school, which unfortunately RJ was too sick to attend.  We just walked down rather than go through the drill of loading and unloading Abbie for a two-block drive.  All the gates around the school were locked on the assumption that everyone would be driving and parking in the parking lot on the far side of the school.  Running late, we didn’t want to walk the long way around on the sidewalk so we cut across the ballfield.  The grass is very bumpy and I was a little concerned about Abbie’s head and neck…silly mommy…I should know better by now.  For the smiles we got during that ride I would push Abbie on the “bumpy grass” all day.  She was grinning so broadly I thought her cheeks may break.  We always try to make things calm and smooth, when in reality Abbie is sitting there thinking “Bring it on!!”
            The Botox shouldn’t be hitting its peak until next week, but it seems that it’s kicking in a little bit already.  While she’s on her back and I can bend her knees way past 90 degrees without any effort.  We can take a straight leg out to the side (“abduction”) to almost 90 degrees (they measured her at 30 degrees the day of the procedure.)  Her heel cords seem a little looser, but I am hoping to see much more improvement there.
            Last Friday we were incredibly blessed by a Casting Crowns concert, which was opened by awesome praise and worship led by a coalition of 15 churches.  We were in an upper section, looking down on perhaps 5000 people, and I thought, “Wow!  All these people are my family…how cool is that??”  If you’ve never heard Casting Crowns, go buy their new CD “Lifesongs”..now!  It is much more than music, it is ministry.  Although the music is also very good, as their recent Grammy attests.  (You can listen to samples at www.castingcrowns.com) I was encouraged, challenged, comforted and renewed at that concert.  And, we also came home with one more child than we went with.  Three-year-old Malehloa lives with her mom and brother in Lesotho, which is a small mountainous country in southern Africa.  My sister met her husband while they were both serving there in the Peace Corps, so I knew Malehloa was meant for us.  Plus, if there were ever an African twin of Abbie, Malehloa just might be her.  Casting Crowns works with World Vision to educate about the needs of children around the world and encourage sponsorship of children in need.  As their lead singer put it, he thinks it should just be a part of becoming a Christian..”You said the prayer, you got baptized..now here’s your child!”  I am ashamed at how long it’s taken us, and how many infomercials we’ve watched and not taken action…but, now we have a precious girl to pray for and support.  Please visit www.worldvision.org/hope to find the child who is waiting for you.
            At church Sunday I was thinking about the flame of God, and heat, and fire.  Wondering why we have to go into the desert to really experience these things.  A comfort verse for me is Isaiah 51:3, where the Lord promises to comfort Zion, and “ her desert He will make like Eden.”  This verse has been with me since a few months after Abbie’s accident, when it was becoming apparent that we weren’t going to get a quick recovery and were instead headed for a desert journey.  And, He has been true to that word for me.  He hasn’t taken me out of the desert, but His continued presence has made it a garden.
  Still…why not send the flame in the garden?  I just finished reading The End of the Spear, and was imagining the Amazonian jungle of the Waodoni, and what would happen to it if fire came down from Heaven.  It would smoke a lot, there would be fire, and it could cause some devastation, but eventually the jungle would reclaim what had been burned. In the desert, however, there is lots of sand…and when tremendous heat meets sand, glass is produced.  Unlike a charred patch in a hungry jungle, the substance is changed forever.  And if the heat is applied appropriately – the right temperature for the right duration, the glass will be transparent.  Isn’t that what He’s trying to do in our trials – not punish, nor defeat nor shame, but to change us into a transparent image through which His image can come through?  I don’t want to smoke and flame and suffer and then become exactly who I was before the trial, I want this to change me forever for the better.  And the only definition of “better” which holds up is to become more and more like Him.  So, I will thank him for the desert and acknowledge that while He’s allowed me to receive the lessons and transformations of the desert, He has not allowed me to experience the true brutality of it…He came to make it a garden for me.

This photo,taken by my sister, captures the essence of this journey for me. Each day I am along for the ride as Abbie takes another step, and each day I sit back and look at her in awe.

Thursday, 6/1/06
            Abbie’s Botox procedure could not have gone any more smoothly.  She was bright-eyed at 5:15am as we were preparing to go to Shriner’s.  I told her we were on the way to get the good medicine in her legs to make them nice and loose, but that it wouldn’t hurt at all.  I got a big grin and flashing eyebrows for that comment.
            I cannot say enough good about Shriner’s Hospital for Children.  Their staff was wonderful, the process was smooth, and Abbie was cared for exceptionally.  It also seemed like Old Home Week.  The first family we saw were friend from Abbie’s speech group at UH; they were also there for Botox .  Then, we saw a boy we knew from our PICU days; the nurse who took Abbie into the OR was from those days as well.  I marveled out how much our world has changed when going for an OR procedure is like going to the neighborhood grocery store.
            The effects of the Botox won’t really kick in for a couple of weeks, so at that time we will start doing PT three times a week.  I am excited about what changes we may see during this summer.  Abbie received injections in her calf muscles, quadriceps, and inner thigh muscles.  The surgeon assessed her range of motion while she was under general anesthesia and was very pleased with what he saw.  I also had him check her left should in the recovery room, while she was still very much “under the influence”, because I was concerned that it was coming out of the socket.  I was expecting him to agree, and was trying not to be anxious about what that would mean.  He said, “Yep, she’s lost some internal rotation, but I don’t feel anything structurally wrong.”  I was relieved when he said it was an issue we can just work through with OT and PT. 
            It was fun to watch Abbie interact with things going on around her – when we told her that one of her wristbands was purple we saw a dimpled smile.  I kept her “yes” switch in her right hand, but I programmed a song into it so it would play a line each time she activated the switch.   That kept her entertained most during most of the pre-op waiting.  It is so nice to be able to get a notable reaction just by talking to her.
            I’ve also recently received the divine gift of another traveling companion/guide.  Several brain injury families I correspond with had mentioned a physician in North Carolina who has researched focused electrical stimulation in coma patients.  I was intrigued by this, but didn’t have the time to get in touch with him and explain our situation.  Then, one day after visiting Abbie’s site, he emailed me.  The protocol he has used in his research involves stimulating the right median nerve using conductive patches on the inside of the right wrist.  I thought, “Hmmm – perhaps I can try this with the Biomodulator.”
            Dr. Cooper’s research indicates that patients who are a year or more out from their injury require at least a year of two of this therapy to achieve results. I wasn’t expecting to see anything very quickly – but (here we go again) Abbie has proven me wrong.  Earlier this week I was lifting her shoulders off a pillow to sit her up, and she just sat up on her own – right to a perfect vertical position without falling forward.  I was in shock. In the prone position Abbie will usually push her hands down to her hips in an attempt to move, but this week she reached forward and opened her hand at the same time – totally new.  She is getting stronger with her right arm and hand, which is especially evident in her switch usage.  I hesitate to ascribe all this to something we just started doing, but it’s the only new thing we’ve added lately.  I think perhaps we are seeing results so quickly because we have spent almost a year working hard at increasing Abbie’s overall voltage.
            So, life is good at our house tonight.  As much as I knew the Botox procedure was minor and didn’t feel apprehensive about it, I find that now that it’s over there is weight lifted from my shoulders.  Last night I had many good dreams, which is a rare occurrence lately. The one that sticks with me was very vivid, and I think it’s because it was from the Lord.  I was walking in a heavily wooded place and heard, “Sometimes you have to walk where there is no trail and leave a path behind you.”  I could see that although there was no trail, I could still clearly envision the way to go and had no doubt about eventual arrival at the destination.  Truly, I felt it was a confirmation that we are doing the right things for Abbie and just need to persevere.  In that, not only we she be healed but my heart’s other desire will be fulfilled –  Abbie’s journey will make a broader, smoother path for other families to travel in the future.
          “Hope is hearing the melody of the future.  Faith is to dance to it”
– Ruebem Alves

Saturday, 5/27/06
            Things are happening with Abbie so fast that I can barely keep up with her.  Time to write was a little tight this week because the 7th and 8th graders from Kyle’s school went to Washington DC and Ray went along as a chaperone (no hazardous duty pay for him, though).  We’ve been going back and forth filling each other in on all the great things about this week, from Mount Vernon to speech therapy to Gettysburg to Abbie reconfirming her status as a Daddy’s Girl.
            Her speech therapy session on Tuesday was amazing.  She has learned to differentiate her left and right hands for “no” and “yes” so much more quickly than we’d even hoped.  We used her new expertise to allow her to play a matching game.  Lisa, her therapist extraordinaire would show her a ball and then ask her to find the other ball she’d hidden under one of three cups.  Abbie would have to ask to look under the cup by saying “yes” or choose not to look by saying “no”, she would then have to tell us if “yes” it matched the ball or “no” it didn’t.  She did great at this!  Before we could really begin, though, Abbie would have to tell us she whether she was ready to work or not.  This gave us a glimpse at just how “age-appropriate” she is.  She completely ignored us and wouldn’t activate either switch.  After waiting a while, I told her “OK, if you just want to take a break I’m going to talk to Auntie Lisa about something else.”  Within a moment of starting my separate conversation, Abbie would say “yes”, she was ready to work.  This happened more than once.  She cannot stand to be left out or not be the center of attention and conversation. 
            During the last round of matching the ball I thought Abbie caught a peek at where Lisa put the ball and even kidded her, “No cheating, Abbie!”  She told us she didn’t want to look under the first cup, and also said “no” to the second cup.  When asked about the third cup she said, “yes” and there was the matching ball!  I think it may have just been a coincidence, but we have learned never to underestimate Abbie.
            On Thursday we went walking down the hall at PT for the first time in several weeks.  She did a good job at assisting through the movements, and on the last few steps even pulled her legs through herself.  With her Botox appointment upcoming (June 1) I am anxious to see how it may help with this particular activity.
            As Debbie’s shift was ending on Friday she was so energized and said to me, “I don’t remember having a day like this with Abbie – she was so engaged, so communicative – she even picked out her clothes today.” I looked down to see Abbie in a dress, which really surprised me.  I don’t recall the last time she picked out a dress to wear.  Debbie was also a little curious about this unusual choice, so she questioned Abbie about it.  It turns out that Abbie picked out the dress because her Daddy was coming home on the big airplane and she wanted to be extra pretty. She even picked out her hair pretty for the day, which complemented the dress perfectly, I must say.
            It is wonderful to have the whole family together again, looking forward to the summer. This weekend though, we will join all of you in remembering the monumental sacrifice so many families have laid at the altar of freedom.  The blood  spilled, the lives  given, the tears without number.  To the families who have borne this burden for all of us – we don’t even know how to begin to thank you and only wish we could shoulder some of the weight for you.  But, on this day we can tell you that your loved ones will not be forgotten.

Sunday, 5/21/06
            It’s been a week of smiles and silliness.  Abbie seems to be feeling much better these days, and I hate to admit I think it’s because I made a new batch of her vegetable mix with less greens and more squash which seems to be easier on her stomach.  I suspect the poor girl may have just had a tummy ache for most of the last month!
            We went to see her ENT last Thursday to suction out Abbie’s ears.  That girl makes more wax than ten kids put together.  I was amazed at what came out of those ears, and was happy to think it may make her more comfortable and better able to hear.  But, the real blessing of the visit was having Dr. T. see Abbie in action with both of her switches.  She stood back and said, “WOW!  She is right there…I mean, she is just stuck in her body and all we have to do is get her out…she is right there!!”  I believe I danced a little jig in the exam room. Dr. T. has always been so positive and supportive, but this went way beyond that.  We moved from her encouraging us to stay positive to really believing herself.  Glory Hallelujah and thank God for switches!
            On Saturday we had the end-of-year baseball party for the twins’ baseball team, the Warriors.  Actually it was as much an event for the “Warrior Princesses”, since almost every boy on the team had a sister, and the games were just an excuse for them to get together and play.  They doted on Abbie all season, and truly saw her as one of them, not just a different little girl in a wheelchair.  Abbie enjoyed all the action, and even lay on the grass with the girls for a while.  Actually, I had laid her down to change a diaper, but pretty soon they gathered around her and spent time together looking up at a giant tree and the blue sky…what great friends.  There were many comments that day as well about how strong she looked, how responsive and engaged she was, and, unfortunately how frustrated she was by not being able to go in the bouncer or play the games.  This baseball season was a complete blessing for us as we were surrounded by awesome, Godly families who shared their food, daughters, and hearts with us.
            Abbie is so engaged now that we can get a grin just by telling her jokes or calling her funny.  She is becoming quicker and quicker with the switches each day and is terribly cranky when she doesn’t have them in her hands…of course, I wouldn’t like someone taking my voice away either.  She is absolutely relishing the ability to say “No!” over and over again.  For the last 18 months she’s only been able to say “yes”, with her “no” being just the absence of a button-push, but no verbalization.  It just seems like things are speeding up as far as her communication, interaction, and understanding, which makes every day fun.
            Of course, not every moment of every day is fun, though.  But, in some ways I think that is a good thing.  It keeps my mind focused on the Lord and reminds me that He is my Strength, my Source and He sees the end from the beginning.  I was driving to town earlier this week, thinking about things from an eternal perspective and what it will be like when we can truly understand it that way.  I thought “What if what appears to be the greatest tragedy he could’ve sent our family turns out to be His greatest mercy??”  Abbie’s injury forced a sharp left-turn in our family’s life plan and path…what if it was for our protection?  What did we not or will we not have to experience because of that left-turn?   So many times it’s easy to assume that life would be wonderful if Abbie had never been injured, but that thought is certainly a mirage.  Perhaps all would be terrific, it would almost certainly be easier logistically, financially, and physically, but in the things that matter…our hearts, our spirits, our character, our contribution…perhaps this trial is the kindest thing He could’ve done for us as we seek to become truer reflections of Him.
            As I sit back and read what I’ve just written I think, “Oh..that’s sounds so very spiritual and pious!”  The thoughts above are mine in my best moments on my best days.  Please pray for me to stay in that place more often!
            The twins are taking turns sleeping with Abbie, and tonight RJ is on duty.  They are spoiling her rotten, and she loves it.  They are being so fulfilled by the immediate reactions and varied responses they can now elicit from her.  They know without a doubt that they are making a difference, making her happy, and making me proud.
            One last thing…I can’t believe I’ve left this out of updates until now…please visit www.princessmadison.org.  Madison is a twin, and has three brothers, so I have much in common with her mom, Gina.  Madison nearly drowned on March 22nd and is now in the midst of the battle we’ve come to know so well.  She will soon be headed home from rehab, and she and her family could really use your prayers! 

Thursday, 5/17/06
Many things to update…we did visit the neurologist last Tuesday.  She spent and hour and half with us, which  was amazing.  But, talking about Abbie’s brain for that long was not enjoyable.  Dr. O. had last seen Abbie when she was in the hospital getting her Nissen, in Sept. 2004, so Abbie is quite different now.  During the exam she had great head control, was responsive and involved in the conversations, but her tone was higher than normal.  She really does hate doctors offices.  Of major concern is possible seizure activity that we have been noticing lately.  There are times where Abbie just “checks out” for a few seconds, a so-called “absence seizure”.  We cannot confirm exactly what these are, and so we are observing her and noting times of apparent seizures for one month.  At the end of that month we will follow up with Dr. O. and most likely will then put Abbie through a 72-hour EEG to see exactly what is going on.  The suspicious activity is not frequent or overwhelming, but seizures can cause damage to the brain so we want to get on top of this.  Please pray that we would be wise, and that Abbie will not require medication.
As we were going through that exam I reminded myself that exactly two years earlier this same, very kind, physician gently counseled Ray and I that our options were to disconnect life support or watch Abbie die in a chaotic fashion.  Oh, how far we have come! And now we can face these next steps holding the same Hand that led us through those dark days.
We went to OT directly from the neurology appointment, so by the time we arrived the conflicting feelings I’d been suppressing bubbled to the surface and I had a bit of meltdown.  Arlene is so compassionate and I think she used that session just to encourage me.  She said, “Let’s really break this down..I want to know exactly where Abbie’s challenge is.”  She gave Abbie a command to use her spoon.  She felt Abbie’s shoulder and elbow relax as she attempted to follow directions.  After observing her response, Arlene said, “OK, she clearly understands the command, she knows what she wants to do, which includes know where her hand is and what it’s supposed to do, she issues the command to her hand and it travels down her arm, but she just can’t quite complete the motion…so, basically all we are dealing with is a motor problem, not a cognition problem.”  That was reassuring, because Abbie understands what we are asking her, understands what it takes to do it, and is trying, we just have to get the motor part of her brain working better.  Much easier said then done, but just today I saw a quote that said, “Very often the impossible is simply the untried.” 
Today we spent the morning at Shriner’s doing all of Abbie’s pre-op visits for her upcoming Botox procedure.  On June 1st Abbie will have Botox injected into her gastrocnemius (calf), quadricep, and inner thigh muscles to allow them to relax and have a greater range of motion.  I was so very pleased that Abbie chose to stay calm during all these appointments (we saw 3 doctors, 2 residents and 2 nurses) so that her muscle tone was beautiful.
 She also did a terrific job of using her switches to interact with the staff.  She is now using a switch in her right hand to say “yes” and a switch in her left hand to say “no”.  This is a huge step, requiring a clear decision about how she wants to respond and then motor planning to use the correct hand.  Her responses today were timely and appropriate.  We always tell the staff that she is cognitively age-appropriate, but today she showed them herself.  Hooray!
A quick update on “Big Ben” as Abbie and I call our Marine friend recovering from a traumatic brain injury.  I spoke with his wife last week and asked if he’d gotten a chance to use the Passy-Muir valve on his trach so that he could try to talk.  She laughed and said, “He kinda blew by that.  They took out his 6.0mm trach, gave him a 4.0mm, and then capped it, all within a few days.”  Those of you who’ve dealt with trachs know how phenomenal this is.  This has allowed Ben to have conversations with his wife!!  Absolutely unbelievable!  Almost all of his comments are appropriate and he even talks differently when his friends call as opposed to when he speaks to his wife and mom.  I told Carissa that it seems kind of backwards since his accident happened so long after Abbie’s, but Big Ben has given us a lot of reassurance that miracles do happen!
I was watching a travel show recently when the host, who was floating down a lovely river in India in a houseboat said, “And in the end, the journey is the destination.”  No, no, no!!  I know this is a popular saying, but it’s totally wrong.  The destination is the destination, the journey only fits us for our arrival.  I don’t think any parent sitting in an ICU or an oncology ward or a cemetery would agree that this sometimes very painful journey is our destination.  Lately, Heaven has become very real to me, as real as the barstool I sit on to type this.  All this time I fear I am missing with Abbie, and my boys as well; all the hopes I think are dashed, all the plans that have changed, perhaps forever – they are miniscule in the light of eternity.  This time will be redeemed and I will have a perfect Abbie in a place outside of time.  This reality keeps my hands on the plow and my feet moving forward.  The grips to my personal plow are attached to a wheelchair, and the row we have to hoe is not one I would have chosen, but I am thankful that the persistence this journey requires keeps me bound to my Yoke-mate daily.  A huge knife through my heart is the thought that “we have lost her forever.”  But, like most things that discourage us, it is a lie.  We have only lost a little time with her, and what we do in this in-between time will matter forever.  So, for now I bid you adieu, for I have plowing to do!

Sorry this posting is up late.
Monday, 5/7/06
            Thank you for all the prayers sent our way on 5/3, the two-year anniversary of Abbie’s accident, we could really feel them.  Some very special friends took me out to a beautiful and relaxing lunch, during which I shared with them how gracefully and tenderly God was carrying me through the day.  That evening, as happens every Wednesday evening, our small group gathered in our home.  It seemed so fitting, because this precious group of people met with us at the hospital for ten Wednesday nights in a row after Abbie’s accident.  They were our safe place to decompress, to cry, and the gather our courage and hope again.
            Ray has a harder time on Wednesday than I did.  I had done most of my grieving on Monday, 5/1.  Because the accident happened on a Monday, the first Monday in May is always much more reminiscent for me than the actual date.  We saw again, though, that the Lord is true to his Word, and he carried us through yet again.
            We capped the week with what we all agree may be our best weekend since May 2004.  It was RJ and Matthew’s 9th birthday, and we hosted their first sleep-over birthday party.  Just before the party was set to start, Ray looked at me and said, “Did we really think this all the way through??”  At 5pm 9 guests arrived, and by 5:15 Ray had them walking down the block to play football at the park.  I stood back and took photos, but did a poor job capturing what was going on in front of me.  The boys were a joy to watch, but what gave me the biggest smile was watching Ray, completely absorbed in playing quarterback for both sides, making sure every boy caught at least one pass, and laughing like I haven’t seen him laugh in ages.  It was a moment to sit back and realize how blessed our family is to have him…he is an awesome dad and husband.
            So, football, swimming, presents, cake, a playstation tournament and Chronicles of Narnia on TV wore out the crew sufficiently that all was quiet on the family room front by midnight.  Then, Ray woke up at 6 to make French toast and entertain the troops until noon.  They were all wonderful, and we were so happy to see what great choices of friends RJ and Matt have made.  In talking about the weekend, Ray and I agreed that the first year after Abbie’s injury was all about survival.  The second year, we became a family again – we moved Abbie and I back into our bedroom, we merged Abbie’s life and the family life, and tried once again to do things together as a family.  This third year, though, this is the year we are going to thrive again as a family.  We are excited to see Abbie blossom, but also excited to see our family experience happiness and joy together again.  We do not have the flexibility or spontaneity that we used to take for granted; our first response to the boys’ request to go to Disneyland is “How fun!” and the second is “How in the world could we do that without splitting up the family?”  But, we see God bringing the joy and happiness right into our home – no airplane tickets, no car rides, no grand scheme necessary.
            Abbie had a tough week physically last week.  She was obviously in pain, which caused much higher tone.  Usually she’s good about letting us know what is bothering her, but this time was more tricky.  It did seem to coincide with her feedings though, so I started to worry about her tummy and gut.  Turns out, yet again, that her mother is just a little slow on the uptake.  The poi I was using in her food had gotten a little to fermented.  When I left it out of today’s feeds the difference was amazing.  Please pray for her muscles to be nice and loose so we can do a lot of standing this week.
            The biggest prayer request today, though, is about an appointment we have tomorrow.  We are going to see the neurologist for the first time in 18 months.  Can you tell I’ve been putting this one off?  Please pray that Abbie will be feeling good so that the doctor can get an accurate assessment of what she can do.  Please pray  that we can have a good conversation and ask good questions.  Most of all, please pray against discouragement and despair – they are both a choice, and I don’t want to choose them tomorrow.  We will almost certainly schedule an EEG, but I am not sure what else could come out of the appointment.  Please just pray that we remember what a little light Abbie is, how strong she is, and how far she’s come!

Wednesday, 5/3/06
            Two years….two years that seem like forever.  Two years that seem like the blink of an eye.  Two years that don’t even seem real, two years of the harshest reality that we have ever known.
            Abbie had the best babysitter in the world, Ashley.  They spent every Friday evening together as Ray and I enjoyed our weekly date night.  Recently, Ashley’s younger sister, Karri, called me about a paper she is writing for school.  She has chosen Abbie as her subject and wanted to know a few ways Abbie’s journey has affected people.  I asked for time to think about that, and promised I would email her an answer.  After I was done typing, it ended up being a pretty good summary of the fruits of these last two years, so today I share it with you.
“It was such nice surprise to hear from you today!  Here are some thoughts off the top of my head about the effect Abbie has had on people; I'm starting with the closest and working my way out:

1. Her family:  We'd never even seen a child with a tracheostomy, or known a family with a child who used a wheelchair before Abbie.  Now, we have met many families with children with very special needs -- the families are heroic, the children are amazing, and our hearts have forever been changed.  Abbie's four brothers will grow up having much more compassion and understanding for people with special needs of any kind.  The twins also have the coolest ride in school --they can ride their bikes up the ramp into our handivan -- they always make sure their friends are watching when they do this.

2.  Her family of faith:  So many people have prayed for Abbie since the beginning of her journey.  I have no doubt that is why she survived an "unsurvivable" injury, and was able to get off the vent, although they said she never would.  Abbie is a testimony to the power of prayer.  Her journey is also teaching us persistence and perseverance.  She is now cognitively age-appropriate, locked in a body that doesn't respond well to her commands and wishes.  This is nothing short of a miracle, but it also calls for continued prayer to free her from the chains holding her now.  I can no longer number the people who've called, written or posted on her web site who have said that Abbie's journey has either helped them find faith or strengthened that which they already had.  This awes me, and helps me realize that there is a much bigger plan for Abbie than I can sometimes see.

3.  Hawaii's special kids:  Abbie's journey has and will improve things for all children with special needs in Hawaii.  Through her Abbie's Angels fund we've been able to purchase very special pieces of equipment to get kids walking and eating sooner.  But, that is just the start.  Because of Abbie I am deeply involved in starting the HOPE Project, which will address the needs of challenged children and their families.  There are huge gaps in available services in Hawaii, and our non-profit organization is planning to open day-programs, provide in-home therapies and strengthen and support families.  I was completely unaware of this portion of Hawaii's population, let alone how deep the needs are -- now, Abbie has shown us how much is possible when kids get what they need, which includes the assumption that all children have potential and are worthy of the very best shot we can give them.

4.  Brain Injury survivors:  Abbie's journey has led us to the edges of technology, nutrition, and therapies -- we are always pushing to find what will work best for her.  She has taught us much these last two years, and now we are able to reach out to others travelling the same road and give them information and hope.  The people she has touched this way range from toddlers injured in the same manner she was, to teenagers injured in a car accidents, to a 26-year-old Marine injured in a training accident.    Every time we feel like we are hitting a plateau or a dead end, God will provide a new tool, method or person, and it's now our privilege to share these things with others.”
            But, what I didn’t share in that email was how profoundly this has affected our family’s grasp of how unbelievably blessed we are.  We have the most incredible, thoughtful, caring, supportive friends and family – the way we have been carried through these past two years is a testimony to God showing his love through people.  I always grin when people who follow Abbie’s site and pray for her ask, “How do you do it?”  I grin because I am looking right at the answer as the person speaks – it’s your prayers, your caring, your help and most of all your sharing in our hope.
            I’d be lying if I said I wasn’t a little apprehensive as this day approached.  But, Abbie and I have been enjoying hour long walks each morning lately, and that’s a time of real enjoyment and encouragement to me.  Just yesterday, strolling with Abbie I thought, “The grace of God is abounding in my life!”  I knew that phrase would get me through this day, because it is true and it is powerful.  God reminded me of how He completely carried and protected us through those initial frightening days, and questioned me about why I was scared of the anniversary, as if He couldn’t carry and protect us again.  So, I find myself typing this with a smile on my face, Abbie’s legs across my lap, celebrating God giving her to us for a second time, instead of mourning a loss with tears in my eyes.  God’s grace is truly abounding in our lives!
            Thank you for your companionship – I have never felt alone.  Thank you for your prayers – Abbie’s name is well-known in Heaven.  Thank you for sharing in our hope – hope never fails.  And, thank you for your love – love always wins!!!

Abbie on her first real horse ride! I was blessed to get to go along for the ride as well. She really enjoyed the horse and was very relaxed during the ride. She also like petting the other animals at the farm, but wasn't as fond of the smell.

This is Abbie standing in her Walkable. We can adjust how much of her weight she bears while she is in it by raising or lowering the bar her harness is attached to. Abbie loves being in the Walkable and totally relaxes her legs as soon as we start putting the harness on.

Monday, 4/24/06
            Thanks to so many of you for your thoughtfulness and kindness since my last posting.  In the days that followed that update the Lord said “It has to be this hard.”  I muffled my spiritual whining and was taken back to the 8th day after Abbie’s accident, standing at the lightbox, looking at her MRI and CT scans.  As we looked at those heartbreaking images, He said, “It has to be this bad.”  I don’t really like either of those statements, but I know the injury had to be this bad so that His power could be manifest more greatly.  I was unsure about why it has to be this hard, but today provided me one big, sweet clue.
            I was privileged today to meet Ben Tourtelot, his wife Carissa and mom, Lisa.  Ben is a 26-year-old Marine, who was on rappel about a month ago when he fell 110 feet, landing on his head.  As RJ asked me how in the world he survived all I could say is, “God is powerful”.  Through mutual friends, we got linked up via the phone last week, and I was very much looking forward to meeting the two women who love him, and sharing with them how much hope there is.  But, honestly, given the circumstances of his injury, I was very unsure what I was going to see when I got to the Tripler ICU.
            I arrived as Carissa and Lisa were giving him a shave, so I had some time just to watch him.  I realized how much I’ve learned over these past 2 years, as little details stood out and practically had me jumping with glee.  He follows directions, licks his lips, moves his arms and legs on command, tracks with his eyes, and totally understands what is going on around him – absolutely unbelievable.  After they had Ben looking handsome, we moved to a waiting room where we could talk openly.  As I shared with them all the great things I’d seen in just that short time, their faces broke out in grins that lit my heart.  Then I knew – Abbie’s journey has to be this hard so I could recognize all those little details and explain to them why they are so meaningful and hopeful. 
            After we talked, I took Abbie’s switch back to Ben’s room and introduced myself.  I said, “Hi Ben, I’m one of Carissa’s friends, Tiffany.  And, I brought something with me to help you talk to her and your mom.  I’m going to put this purple button in your hand. When you want to say something, just press it.”  I’d already programmed a message just for him, but sometimes it can take a long time for a brain-injured patient to understand how the switch works.  Carissa put it in his hand, and told him to just take his time and think about what he wanted to do.  In less than a couple minutes he pressed the switch to say “I love you” to Carissa for the first time in a month.  He pressed it about 4 times in the minute that followed.  I was overcome with joy and said, “Oh Ben, you’re a champ! NO ONE learns how to use the button this fast – only you!!”
            Please pray for Ben to recover with continued amazing speed – he and Carissa are expecting their first child in two months, and the man I met today has a spirit and heart driving him to be a part of welcoming his child to the world.  He also has an amazing wife and a devoted mother – pray for their endurance, strength, and spirits.
            On the Abbie front – it’s been a bit of a challenging week physically.  Something is causing her pain, most likely her teeth, and that results in increased muscle tone and unwillingness to cooperate with her exercises.  She is actually getting her first permanent tooth in front!  I thought she lost those three lower baby teeth because of the trauma of intubation, but perhaps it was just time.   It is emotionally painful for me when I can’t figure out what is wrong and make her feel better.  Please pray that we would either “get a clue” or it would resolve itself.
            Meeting Ben today was a fresh reminder that miracles do indeed happen, and that hope resting on Christ is never false.  And, He has used you this week to remind me that I never, ever walk alone --- thank you!

SSG Brian Craig, en route to Afghanistan
"Greater love has no man than this, than to lay down his life for his friends" John 15:13

4/16/06
HE IS RISEN!!  He is risen, indeed!  Our whole family would like to wish you a very Happy Easter.  It was a sunny day here, full of much celebration.  And, right now I’m struggling in my heart about how honest to be in this update.  Well, honesty wins…the sugar-coating will be saved for the candies in the Easter baskets.
            Today was a very difficult day for me, and I cried more deeply than I have in a long, long time.  I think there are many reasons.  Easter is the last holiday we celebrated with Abbie before her accident.  It was a wonderful day spent with special friends, and those memories are so clear.  The realization that two years has passed since then is hitting me hard.  Life has gone one, everyone’s children are so much bigger, and yet part of my heart is frozen in Easter of 2004.
            It’s also difficult because little girls look particularly beautiful on this day, all done up it frilly dresses and hair bows.  I told a friend this morning that it’s one thing to know you are hungry, but quite another to have to sit across the table from a jolly person gorging on a feast.  That’s how I felt today.  I can’t believe I’m writing this, but it’s the truth. 
            My heart was so crushed today that as I lay on my bed in the afternoon, I was screaming at God in my head.  Not an angry scream, but an anguished one. I let myself give voice to all that I am feeling, which I never allow myself to do.  There are so many needs I must meet, and I can’t do that if I’m sobbing on the floor in a puddle of tears, so it’s safer just to never even start down that path.  For one moment I suspended all my rationalizations and realizations about how much we are learning through this, how many wonderful people have come into our lives because of Abbie, and what a huge plan He has for her.  And, then I just allowed myself to admit how much this hurts.  It was almost scary to face that, but it was good.
            I don’t think I ever appreciated God’s grace and mercy until I had a need this deep.  Yesterday, there were literally times I could not have taken a breath without Him helping me to do it.  I am learning much about what it means to abide in Christ minute-by-minute, because I am unable to do anything else.  And, perhaps that was His Easter gift to me. 
            Abbie did get to pet a bunny, lamb, goat, dog and cow at the petting zoo set up at the Pacific Club, where we had lunch.  She soaked it all in, and then told me all about it when we got home.  She is quite the jabberjaw lately – answering as best she can whenever we ask her a question, and very often giving unsolicited opinions about things.
            I see her spirit, and her heart, and I rejoice.  I was thinking this morning about brushing her hair on the morning of her accident, and how I gave thanks to God at that moment because I loved doing that so much.  He gently said, “I never took that away from you.”  I recalled brushing Abbie’s hair in the PICU, and realized He was right. 
            As honest as I’ve been today, I need you to also know that I am alright, in fact I am good.  This is a time of sharpening and re-focusing for me, and those things are never pain-free.  I was driving home one day recently and thanking God for letting me go through this experience in place as beautiful as Hawaii, where I can see His presence in every direction.  In that moment He encouraged me with, “I will not allow you to suffer once more ounce of pain than what you need.”  I cling to that today, trusting Him, and celebrating that today marks His victory – the victory that allows me to have the hope which will never fail.

Saturday 4/15/06
            Today I want to use Abbie’s site to remember SSG Brian T. Craig, who gave his life in Afghanistan on this date in 2002.  He is the beloved son of Barbara and Arthur, and the treasured brother of Elaine.  Barbara has been a ceaseless encourager to me along Abbie’s path, and just when I am hitting a low point a card will arrive from Barbara with tender words and a comforting “You are loved!” at the end.  I know our hearts are tied together because of the grief they both hold, but also because of the Hope we are relying on.
            It’s very easy to get dazed by the numbers in Afghanistan and Iraq, and never feel the profound sense of loss of each one. We are missing the chance to truly honor them if we allow that to happen.  So, let me introduce you to Brian, who was 27 years old, and a member of an Explosive Ordinance Detachment – the brave guys who defuse munitions while every one else keeps their distance.  He used his talents, intelligence and ultimately his life to make things safer both for the soldiers and the local civilians.
            But, Brian was also a man growing in his faith, a son who loved his parents and his brother and sister.  I invite you to visit his website, www.ssgbriantcraig.org  to read one of his last letters home.  It will leave you weeping, and also praying to be the kind of parents that Arthur and Barbara were to him.
            I know without a doubt that Brian is someplace glorious, wonderful and perfect right now, and that is worth rejoicing over.  But, please remember his family.  As Brian alludes to in his letter, there is a God-sized hole in each of our hearts that only He can fill.  But, in the hearts of his family now, there is also a Brian-sized hole, and they are relying on God’s grace to fill that as well.

Thursday, 4/13/06
            It’s been a difficult week, but not because of our little Miss who is doing wonderfully.  I spoke with Luke’s dad, Gordy, yesterday and he tearfully shared with me that the doctors are talking about putting a trach back in.  Luke is currently in the PICU, intubated, and fighting the flu and pneumonia.  Having just been in the hospital with Abbie because of pneumonia, this hits very close to home.  As we were being admitted to the hospital, thoughts of the PICU and intubation lurked in my mind – so much so that I had to go to the restroom and repeat over and over “Perfect love casts out fear”.  Going back to having a trach would be devastating, both emotionally and because it’s much more difficult to care for a child with a trach.  Please pray for Luke to rebound quickly so the trach discussion doesn’t have to proceed any further.  Pray for wisdom, strength and boldness for Gordy and Sue, so that they will clearly know what is best for Luke and have the courage to stand for it.  They are doing a great job at keeping his blog updated, so you can follow his progress at www.howsluke.blogspot.com
            After I spoke to Gordy, my mom called to let me know that my Uncle Jerry will be having surgery to amputate his remaining leg. He was  admitted to the ICU today because of several issues.  I traveled to Oregon in December to be there for his last surgery, so won’t be able to go this time.  Please pray that his body would handle the surgery well and that he will recover quickly and completely.
            Then the phone rang again…by this time I didn’t want to answer, but saw the call was coming from Florida and correctly assumed it was Crystal’s dad.  He didn’t sound quite right, so I asked him what was up.  He answered, “I’m in the hospital because I had a stroke today.”  I think I let out a little scream.  The feeling has returned to his arm and leg, and the MRI looked OK, so he should recover completely…but please cover him with your prayers.  Please pray for Crystal as well; it is difficult to be so far away from her dad when he is ill.
            Whew!  Thankfully, Abbie has given us much to rejoice about this week.  On Sunday we were reading a book together and I noticed how well she was looking at the pictures.  I’d ask her where the cricket was and she would scan the whole page.  When she didn’t find it, she turned her head to look at the other page and scanned it until she found the cricket, which she announced by clicking her tongue.  She continued this throughout the book.  At  the end I said, “Wow, Abbie!  Your eyes are working really well today.”  More clicking in agreement.  At therapy on Tuesday we were waiting to go into the treatment room, and Abbie was watching kids across the hallway play with a toy kitchen.  It was the longest distance over which I’d ever seen her visually engage.  It is coming…
            On Monday I walked her down to the elementary school to pick up RJ and Matt.  I’ve taken her down there several times, but always in the jogging stroller.  This time I took her in her wheelchair.  Within one minute of walking onto the basketball courts with her there were a flock of kids around her asking a million questions, and then repeating snatches of what they heard…it was the ultimate game of “Telephone.”  Once I stopped to sign the boys out a group of girls surrounded her chair.  All of them were six years old and very curious about Abbie.  After a few minutes of them talking to her and questioning me, Abbie started to cry.  I explained that it was a cry of frustration because she wanted so much to talk to and play with them.  She cried all the way home, and continued fussing even once we were inside.  I was desperate to calm her, so finally I said, “Abbie, don’t be frustrated…those girls are six, and you are only four.  They are much bigger and older than you.  When you are six you will be able to run around on the courts like them.”  That was the end of the crying, and an “a-ha” moment for me.  We now have a new, big motivator.  When we need her to work with us, I remind her that big six-year old girls have relaxed legs, or they sit up straight, or that all her hard work will let her be like them.    Hearing me talk to her about being six last night, Ray chimed in with, “Yes, Abbie, when you are six I think I will buy you a two-wheeled bike.”  That got her excited, so then he wanted her to pick out a color.  Pink was not interesting, but when he mentioned purple she about jumped out of bed.  So..purple it is.
            This has already been a very long update – but there is more I have to write.  It doesn’t have to do with Abbie directly, but more with how God is moving through her and on her behalf. 
            For 18 months or so a couple of her phenomenal therapists and I have been trying to put together a private program for kids with multiple challenges, like Abbie.  There is a dearth of appropriate services here in Hawaii, and we can so clearly see what needs to fill the gap.  We found some vacant space that would be perfect, it even includes a therapy pool and whirlpool already outfitted with wheelchair lifts.  But, the prospect of having to raise a couple million dollars for our “HOPE Project” is daunting.  A couple months ago I prayed , “Lord, I know you want me to do this, but You also know I need to focus on my family and don’t really have the time.  If You want this to happen, You are going to have to do it.”  In the last 6 weeks people and opportunities have literally been falling into my lap.  The UH Speech and Language school is moving into space vacated when the Medical School moved.  There is apparently a large child development space in their building, and they want to partner with us to begin providing some of the services we’ve proposed.  I was thrilled about that, but it was only an appetizer compared to the main course God was preparing.
            On Monday I met with a woman, Wini,  who works for a company that is building a long-term care facility for medically fragile children.  She showed me the master plan and we talked through their vision and philosophy.  Their building will have a large educational space they are willing to open up to day-program kids.  They will have a therapy pool and a 1-acre garden, which is a true luxury in Hawaii. She was saying to me, almost verbatim, what our group had put down on paper.  I almost didn’t know how to respond. The owner of the company has wanted to do this for twenty years, and Wini has been working on making it happen since 1999.  She showed me photos of the buildings currently under construction…it is really happening!  They are hoping to open at the first of next year.  There is going to be a place for “HOPE” to bloom, and I am over the moon about it.  Only God could orchestrate this, and I am so profoundly filled with thanks and anticipation.
            On Sunday, Crystal’s good friend Jenna pulled me aside after church.  She lowered her voice and said, “Can I talk to you?”  I was a little worried, because she sounded so serious.  We sat down and she said, “I’ve never really shared with you why I decided to become an EMT”  Jenna is a recent graduate and just started working.  She continued, “I didn’t really know you guys at the time of Abbie’s accident, so I don’t know why it affected me so deeply, but it did.  When people ask me now why I decided to become an EMT, I tell them about Abbie.”  On the way home I was just overwhelmed by that, by how all of this is such a chain.  I know that someday  Jenna is going to run through a gate to take a hurting child out of the arms of a panic-stricken mother, and Abbie’s angels will be smiling.
            So, at the end of the day all I can say is that God is sovereign and He is good.  Not only because of the wonderful things I see Him doing, but also because when those scary phone calls come and the days are dark, His Light is there.

Friday, 4/7/06
              Abbie came off the oxygen yesterday afternoon and did great!  I put her back on 1 liter during the night just to help her rest well, but she’s been off all day today and we are not planning on putting it back on tonight.  She has really bounced back quickly, praise God!
            Tonight I got her up in her Walkable, just to do some standing since she’s been laying down for a couple of weeks.  I guess I shouldn’t be surprised at her anymore, but I am.  She stood wonderfully, and held her head and trunk herself.  She would tire and lower her chin to her chest, but when she was ready she would pick it right back up all by herself.  Amazing.
            Today she was also responding to commands immediately – things like “pick up your feet”, “now put them down”.  So, she has come through this illness as strong as ever, continuing to move forward to our great delight.
            Now that Abbie is through this tunnel, it seems that our dear friend, Luke is entering it.  His mommy, Sue, called me on their way to the ER today, with Luke on 4 liters of oxygen.  Boy, how familiar did that sound.  Please, please pray for Luke and his family.  It is so exhausting to be in the hospital, and Sue no longer has any nursing help so there won’t be any “catch up” sleep once they get home.
            This has been a very fatiguing couple of weeks for me, and it’s always during times like this that sadness and despair can creep in.  I am learning much still about that one word that changes everything, the one thing that is different about Christianity…grace.  There are moments I can pray for nothing other than God’s grace to cover me, and to fill in the cracks caused by my exhaustion, selfishness or bad attitudes.  And, He has been pouring it out thick and heavy – through friends, books, physicians, my family – every time I turn around there is an encouragement there for me.  Beth Moore, whose study “A Woman’s Heart, God’s Dwelling Place” prepared me for this whole journey, said on TV this week, “Are you in a dark place?  Perhaps you are being covered by His hand.  Are you in a tight spot?  Perhaps you are in the cleft of the rock.”   Thanks, Beth for readjusting my vision – the lack of light isn’t hopelessness, it is protection.
            As I was struggling one day this week I picked up a devotional, and the title verse for the day was very familiar to me.  Tears streamed down as I read 2 Peter 3:8-9.  “Beloved, do not forget this one thing, that with the Lord one day is as a thousand years, and a thousand years as one day.  The Lord is not slack concerning his promises as some count slackness.”  God’s grace…raining down on me.

Wednesday, 4/5/06
            Just time to write a quick note to let you know that Abbie is home from the hospital.  She was admitted for seven days as a result of pneumonia.  Abbie is still on  a fair amount of oxygen (ranging from 1 to 2 liters), but her chest sounds much better.  As always, out of this challenging time there have come blessings.  Utmost to me is seeing how this illness has evidenced how much stronger Abbie has become.  In the past, when she would get sick, we would see regressions in the skills we’d been working on, and a decline in her overall strength.  Not this time.  She still has great trunk and head control, and continues to reach with her arms.  She also never looked really sick.  She is happy to be home and is right back in the swing of things…using her potty chair, enjoying her brothers, and even running all over town with me yesterday to pick up the boys.
            Please just continue to pray for her strength and for her lungs to become completely clear.  She has come through this amazingly well, and we know it’s because of the power of prayer.  I was a little exhausted towards the end of our hospital stay, and a little down, when her pediatrician gave me a good pep talk.  She said, “This is the first time Abbie’s had pneumonia, and you realize that everyone around here is surprised that she isn’t in and out of here monthly…and, many kids end up on respirators when they get pneumonia, and she hasn’t come close to that!”  What a blessing Dr. L. continues to be!    One morning she and I were talking about another little girl who recently experienced nothing less than a miraculous recovery after her heart stopped working.  Dr. L. turned to Abbie and said, “See Abbie, she got healed, and I know your healing is coming too!”.  She then looked at me and said, “There is something planned for Abbie that is so huge I can’t even imagine it!”  What a difference she makes to us!!
            Abbie now needs middle of the night nebulizer treatments, and her coughing sometimes keeps her up for a good part of the night.  So, we are all a little tired, as well.  We could use your prayers for stamina and energy as we see her through this little bump in the road.

Saturday, 3/25/06
            We had a good trip to the ER with Abbie yesterday…any time they let you come home instead of being admitted it’s a good trip.  She had a slight fever and was subdued on Thursday, but seemed to be doing okay.  That night her fever spiked to 103 and she required 3 liters of oxygen to keep her sats in the 90s.  I also had to give her a nebulizer treatment for the first time since last summer.  In the morning the pediatrician recommended that we take her to the ER so they could do the quick-results Influenza test.
            We made it to the ER around 10am, and in short order Abbie was tested for Influenzas A and B, as well as RSV.  She also had a chest Xray.  All of these tests came back negative, praise God!  So, it’s just some bug her brothers have generously shared with her.  We were on the way home within 2 hours of arriving at the ER- amazing!!  It’s wonderful not having her admitted, but she still requires round the clock care at home.  Please pray for her to rebound quickly, and for us to have the endurance we need to care for her.
            I’m sad this has happened during my parents’ one-week visit. I was so anxious for them to see how well Abbie is doing.  At least my mom got to see one OT session with me.  Abbie did very well rolling down a wedge – holding her head up as she rolled and initiating the movements herself.  At the bottom, in true Abbie form, she decided she wanted to roll up the wedge.  So, we helped her do one rotation and then moved to the “horsey swing” – a suspended cylinder the therapist sits on with her.  It was another case of little things being big things.  The swing was a little too low, so Abbie’s feet were dragging on the ground just a bit.  Her toes were pointed down, so I said,  “Abbie, we need to have walking feet instead of ballerina toes” and immediately she pulled her feet up into a more neutral position.  Yipee!!  She responded to the command right away, and pulling her feet up is not something that she’s been able to do very much…guess all I had to do was ask!
            She’s resting comfortably today, as long as I have the appropriate movie playing…Nutcracker ran three times in a row until the DVD malfunctioned.  I’m hoping that this week will bring our happy, smiley girl back to us.  At times like this your prayers are more precious than ever!

Monday, 3/20/06
            We are just back from a wonderful getaway to Maui, and have so much to catch up on!    Two weeks ago the poor UPS man had to lug a very heavy box up our front steps, but hopefully the joy we greeted him with made up for it.  He delivered Abbie’s very own Walkable!  My live-in handyman, Kyle, had it all put together in less than fifteen minutes.  That afternoon we used it to help Abbie sit at the piano by herself, something she was very clear about wanting to do.  I helped her play Mary Had a Little Lamb, and she was very pleased with herself.  Just this evening Ray, Kyle and I took her for a little stroll in her Walkable.  Just telling her that we were going walking resulted in her entire body relaxing…her new nickname is “Lucy”, as in Loosey-Goosey.  It’s amazing to feel the changes that are happening in her body.  She did wonderfully during our walk tonight, bending her legs and bringing them forward herself several times.  It’s so exciting to have this piece of equipment at home.
            The next big thing happened on Saturday, 3/11.  Abbie went for her first therapeutic horse ride.  We traveled to “Da Ranch” in Waimanalo with our Easter Seals speech group, which is comprised of kids who use devices to communicate.  There were at least fifteen  people there volunteering their time to allow these kids to experience the farm and horseback riding, which really humbled me.  We began by warming up on barrels, rocking back and forth, and even doing the Macarena.  We then moved to a bareback blanket and then a saddle placed on a horizontal telephone pole.  The idea is to move the kids off the ground in incremental steps so that when they get on the huge horses they are not freaked out by the distance to the ground.  After these warm ups Abbie got to spend some time petting Sally the pony and feeling her mane and tail.   After she got fit for helmet it was our turn!  They allowed me to ride with her, so it was an incredibly special time for us.  What a blessing to being doing “therapy” looking at mountains and green meadows, hearing birds and smelling flowers (along with a few other scentsJ).
            Equine therapy is very unique in that it perfectly mimics the movements in walking, so it stretches and works the same muscles and helps the kids learn the motions.  That one session was so good for Abbie that beginning in April I am going to try to take her riding every Wednesday.  We have grown to be good friends with the families in our group.  As each child circled around the ring a cheer would go up from all of us gathered around the fences. Later that same afternoon the twins had a baseball game, and I sensed that same spirit as we cheered for each batter and every good play in the field.  At that moment I was thankful to Abbie for introducing us to a whole different kind of team, playing a whole different kind of game, but experiencing the same joy.
            After horse-riding in the morning and a baseball game in the afternoon our very dear friends, the Suttons arrived that evening from Colorado.  This past Wednesday all 12 of us loaded up and headed to Maui together.  God answered our prayers for a break in the rain, and we had beautiful mornings each day we were there.  Abbie was only too happy to share a big bed with Matthew and RJ, and I think she enjoyed just strolling around with me, being lazy and reading books on the bed, and especially watching the movie we found about little girls learning hula.  We did get her down on the sand, and she liked that, and was very tolerant of the wind (not usually one of her favorite things).  On Sunday we even took her down to the water.  She really liked it, but I could not find a graceful, safe way to hold 42 pounds of princess, so we didn’t stay in the water long.  It is wonderful, though, to see sun-kissed cheeks again.
            The Suttons departed yesterday – it’s always too soon for them to leave.  But it was so encouraging to hear their observations of how different Abbie is since they were here last March.  It also boosted my spirits to here them note how our entire family seems to be in a better place now.  We are figuring out how to live this new life while never settling for it, if that makes sense.
            I know I probably don’t have to ask you to do this, but if you see postings in the Guestbook about other little ones recovery from injuries, will you join us in praying for them?  I am thinking specifically right now of little Hunter, whose name was posted recently.  He joins our list that includes Isabelle, Luke, AJ, Jonathan, Samantha, Cade, Ross, Seth, Brett Jr. and others whose names we don’t know.  There is so much hope, and I want to reach those families who may be in the dark places we have walked – nobody can survive those places alone.
            My mom and dad arrive from Oregon tomorrow, so it will be another fun week around our house.  Please pray for my boys – they are all suffering from the flu.  Matthew is the furthest through it and even went to school today, Kyle is almost back to himself but Chase and RJ are deep in the midst of it and are miserable.  It breaks my heart when I can’t do anything to “make it all better.”  But, I must admit I’ve appreciated the chance to be their mommy again, too.
You know in all your hearts and in all your souls that not one thing has failed of all the good things which the LORD your God spoke concerning you.  All have come to pass for you; not one word of them has failed.   --  Joshua 23:14

Saturday, 3/4/06
We’re still on dry land, but this week we found out that while kids in Hawaii will never get a snow day off of school, they can get rain days.  There were some areas on Oahu that got 18 inches of rain in a 24-hour period, which as you can imagine made some roads impassable.  We don’t live on the wetter side of the island, so although we spent the week feeling like we were living in a balmy version of Seattle, we actually got off easy.
            We loved having my sister Tara here with her sons Cooper and Oscar.  I would program Abbie’s switch each morning so she could greet Cooper and then sing songs and count with him.  I think the favorite for both of them, though was playing Hide and Seek.  I would program in the counting, then “Where are you?? I ‘m going to find you” and then “There you are!”  But, we do have to help Cooper learn the finer points of the game.  As soon as we were done counting we would hear, “I’m right here, Tuff-ney!”   On the way to the airport Cooper said, “I want Abbie to come visit me at my house.  Will you make sure she brings her switch, because that makes me happy.”  It made me cry then, and is wetting my cheeks as I type.
            Abbie got up in the Walkable on Friday at physical therapy.  She is doing an amazing job at lifting and holding her trunk while she’s standing.  She is not used to bearing a lot of weight on her feet yet, so would you pray that she will gain strength and flexibility as she practices?  We then kept her in the harness and hydraulically lowered it so that she could sit on a chair.  She again did a super job at holding her head and trunk without pushing through her legs, which means she’s holding herself up using her strength rather than her tone.  We are really looking forward to her own Walkable arriving at the house in two weeks.  We have been telling her that soon she’ll be able to walk all over the house again, and perhaps even sit down at the piano and play a song for us.  She clucks her tongue so hard at that I worry she may pull a muscle!
            Today we went to a workshop at Easter Seals for kids using communication devices.  This session was in preparation for our group outing next Saturday to a therapeutic horse-riding stable.  One dad in the group made a professional-quality video of the program, and seeing what they can do with kids of all abilities made me cry (I know, a lot of tears lately).  I am so very excited to get Abbie up on a horse!  We worked hard to day to make sure we can work in a lot of language opportunities during the experience.  I’m sure she’ll have lots to say about the barnyard smell!  And, yes, I’ll make sure we takes lots of pictures.
            We are pretty much without nursing for the next 2 weeks, so please pray for our stamina, endurance and juggling skills.  During periods like this it is hard to give Abbie the time, attention and stimulation she deserves, so we’re just praying that life in general will be calm.
            We had a good question at our small group on Wednesday evening…”How can you tell if something you are going through is a test from God or you falling into temptation?”  I think we like to group the bulk of our challenges in category number one, which makes them not our fault or responsibility.  Unfortunately, as I reflected on it, I think a majority of what we struggle with is actually in category number two.  The best example I could give relating to Abbie’s journey is that yes, I do believe it is a test in the broad scheme of things.  However, daily I can fall in to temptation, such as the temptation to despair, the temptation to covet, the temptation walk in my own strength…these things take a simple test from God and turn it into a convoluted trial for my heart.  Simple doesn’t mean easy, but it does mean straightforward.  In most of God’s tests I think His two main questions are, “Do you love Me?” and “Do you trust Me?”  If we can simply answer those with a “Yes”, much of the temptation is avoided. Again, simple doesn’t mean easy, but I think God really treasures the hard, heartbroken “Yes” more than anything.