BIg Gulps

Swallowing is one of those skills we take for granted, until it's lost and you realize how many precise functions make up this precious ability.

After her initial injury,  Abbie had a trach  placed in part because she did not have a good enough swallow to protect her lungs.  With her trach tube in place, we began a therapy called Vital Stim, which strengthens and trains swallowing.  She was progressing nicely, even though she did not find it a pleasant experience.

Then, we decannulated her.  Getting rid of that tube was a huge victory, but the open stoma in her throat meant that she couldn't build up adequate pressure in her throat to produce good swallows.  It seemed pointless to continue Vital Stim until her stoma closed.  At the time I made that decision, I didn't know it would be a four year delay!

Abbie went for a Vital Stim evaluation last Friday, as part of the process to request authorization for a round of therapy.  What a difference these years have made!  Although we have not worked on oral eating while we've been so busy with other things, the progress was obvious.

Abbie will now swallow on command.  This is huge because it allows us to involve her in the therapy -- she is not just surviving an hour with electrodes on her throat.  She has begun to involve her lips in the movement, which is another big step.  Most of all, we have been able to carry that hour of therapy into the days after, as I ask Abbie to practice her swallowing.  She is rightfully proud of herself, and enjoys our enthusiastic responses to her efforts.

I am hoping that our request for this therapy will be approved.  It's not so much that I'm anxious to transition Abbie to oral eating.  That is definitely a "someday" goal, but for now I would be thrilled to strengthen her swallowing enough to prevent saliva from seeping down her throat, which then leads to frequent suctioning.  Our life would be so different if that darn suction machine did not have to be such an ever-present companion!

Panda is becoming Abbie's little buddy.  After a nice walk to the beach yesterday, his favorite place to lazily relax was right next to her, where she could put her hands in his coat and feel him breathing.  What a pair!

Our current schedule, which has me at school the whole time Abbie is there, and then trying to fit the rest our life in to the other hours of the day is getting challenging.  (Read:  I am exhausted!)  I am so happy to be there, and so thankful to be allowed to help, but we are searching for ways to find a balance so we all don't crash and burn.  Right now, this is our biggest prayer request:  stamina, discernment, and balance.

Two little personal notes:  Thinking of you Cheshires - especially the kittens...our Father is ever near the broken-hearted.

And, R.I.P Oreo Sutton --- thinking of you guys as well.

May God bless you today!

A Valentine's Day Surprise

For a sweetheart like Abbie, we wanted to do something very special on Valentine's Day.  So, we got Kung Fu Panda.  Nope, not the hilarious movie, but a real, live, snuggly one.

Now, our version does not live on bamboo, but rather dog food, treats and lots of love.  Meet the newest member of our family:

 

Our little Panda boy, who turned one the day after he came to us, is a Havanese.  Hava-who??  That's what I asked when we first found this breed during an online search for breeders on Oahu raising hypoallergenic, non-shedding dogs.  

Originating in Cuba, the the Havanese were the playmates of the children of the royal court in Havana.  As I read the website (www.havanesehawaii.com), I thought, "this is too good to be true!"  

"Extremely intelligent, loyal, very loving, playful and always eager to please.  Nonshedding, hypoallergenic and odorless.  A very people-oriented dog, they will follow their people around the house but are not overly possessive of them, showing no jealousy or aggression to other dogs, pets or humans"

Well, it is all true.  He just could not be a better dog.  When I introduced him to Abbie, she was laying on the floor.  He got on his tummy and scooted his head onto her lap, splayed all his legs out to lay completely flat, and then held very, very still.  He knew.  I don't have any pictures of them together yet, because I have been facilitating their time together. 

His hair feels like angora, so Abbie really enjoys petting him.  He doesn't get skittish when she coughs, or even when she's suctioned.  The first morning he was here, every time Abbie coughed in the other room he would stop what he was doing and alert, making sure that I heard what was going on.

Having Panda come to our home, all grown up and ready to just meld right into our family has been a real answer to prayer.  We've wanted to get a dog for Abbie for a long time, but knew, given the demands of our daily life, that it would have to be exactly the right dog.  None of this would have been possible without Pam and Richard, the breeders.  Here they are with Matt, RJ and Panda. 

 

   

RJ wanted to surprise Matt as well as Abbie, so Matt thought it was just a boring Sunday afternoon until a dog with a big red bow showed up. 

That moment was a lot of fun!  We feel very blessed to have him.

Abbie is back in school this week, and doing well.  She's so excited that she's been wide awake when I go to her at 5am.  We had a great Speech Therapy session at school, where the therapists identified some new switches to use, and new places to use them.  I am excited for Abbie, as new doors open for her -- and, as always, incredibly proud of her.

May I ask you to pray for her body, as we attempt to get her weight-bearing again after her injury and illness?  Please pray for soft muscle tone, proper leg rotation, and comfort in standing.

May God bless you today!

What We Always Knew

I suppose it's not rare to have adolescent children look askance at their mothers every now and then; I often supply my sons with good reason.  Last night was a great example.  What should a 12-year-old think when Mom is just sitting quietly on the couch, working on the computer, when suddenly she is gasping, fluttering her hands beneath her watering eyes, and unable to speak in sentences?

My precious boys, though, do give me the benefit of the doubt.  They at least ask "What's up?" instead of just collecting one more bit of evidence for the "Mom is Crazy" file.  During this most recent episode, I just pulled Matt over to the computer, and had him begin reading this article:

The iBrain

I hope you will go read it, especially if you are a brain-injury family.  Finally, FINALLY, there is a study to affirm what we have always known and said about our loved ones.  They are in there!

The centerpoint of the article is a study using functional Magnetic Resonance Imaging (fMRI) with patients classified as "vegetative."  What they found is "Human minds stripped of every other power can still control one last organ—the brain."  

When they asked the patient to imagine doing certain acitivities, the appropriate area of the brain lit up, even if no outwardly-observable movement was created.  The researchers were able to elicit answers to questions by asking the patients to think about playing tennis for “yes” and navigating through their town for “no” (since these thoughts light up different parts of the brain.)  

The article speaks to “the mind using the brain as a communication device.”  In other words, the idea that “Abbie” is not her injured brain, but rather the mind, soul and spirit that use that brain, has been affirmed.

Also affirmed is that our loved ones’ awareness and understanding cannot be measured by their outward actions or reactions.  This should necessarily shift prevailing assumptions about brain injury survivors, their worth, dignity, and potential.  The article called the patients “buried alive” inside paralyzed bodies.  Can you imagine anything more scary or intolerable?  Families have always known this, and thus have refused to give in, give up, or give out.  If you were buried alive, wouldn’t you pray for someone to love you enough to keep digging?

I am also more hopeful that someday there will be technology allowing brain-injury survivors to communicate by using the only body part they can still control – the brain.

Hope abounds, and joy is ever-present.  Abbie is overcoming a head cold and we look forward to being back in school next week.  She has been working hard on memorizing Bible verses, and learning all the states and capitals.

What an amazing journey.  God is good…..all the time!

Twists and Turns

I've waited over a week to write this update, to ensure the words would be issuing forth from a rational, rather than emotional, place.

As I've written, Abbie really enjoys school, and I felt her transition was going very well.  The only glitch I sensed was that the staff was anxious to have me out of the classroom before they were prepared to safely handle Abbie.  I worried that they did not yet know what they didn't know.  I have never hoped more strongly to be wrong.

Alas, I was not.  During the first in-school therapy session that I did not attend, Abbie's left femur was fractured, her left ACL was strained, as was the lumbar region of her back, as she was put into a twisting motion, while seated, that her body could not accommodate.  A staff member indicated there had "been an incident" during therapy.

As I picked up Abbie to seat her in her wheelchair, she began to scream and cry.  Blotchy face.  Big fat tears.  I had only seen Abbie like this once before, and I got the same sick feeling knowing that she had probably fractured one or both of her legs.  I touched base with Ray and asked him to call ahead to the Kapiolani ER.

Lots of films and a few hours later we found that the injury was limited to her left side, and because the fracture was a spiral, it was more stable than a through-and-through.  It is high up on her left leg, so the surgeon felt it was reasonable to give her a chance to heal without putting her in a dreaded spica cast.  I am so grateful for that.  We just have to be very aware of how we position and move her -- so far, so good.  We will have follow-up Xrays on Friday, and hope to see healing well underway.  Because Abbie's bones are so weakened, it does not take her long to get back to her baseline strength, which is a mixed blessing.

Because of the fracture she cannot bear weight for three weeks, so she will come out of this with even weaker bones as her bone density melts away.  This is a definite concern as we plan her return to school.

Return to school???  Yes.  Although many people we've talked to have advised to us to retain counsel, to consider legal action, or at the very least to throw a big huge fit, we don't see any of those contributing to a positive long-term solution for Abbie.

So, we had a meeting at the school on Monday which Ray and I both felt was productive.  This injury is a game-changer and although, as Ray put it, we have no desire to be permanent helicopter parents, they are going to have to get used to me being there until WE determine it is safe for Abbie.  There is a deep cultural bias against this within the Department of Education, but we have the great fortune of working with an outstanding principal whom we trust.  We have confidence that we will be able to work through this.  We have to.

On the upside, Miss Abbie has not been idle during this unplanned vacation.  We've used it to address more items in her IEP.  We've not worked on money very much, so we introduced that today.  In two hours she went from identifying coins to doing story problems like:

"If the ice cream cone cost 25 cents, and you have one dime, how much more money do you need?"

We tried to trick her with this one:

"If the comb costs 15 cents and you have three nickels, how much more money do you need?"
She correctly chose zero!  No tricking her!!

In all things there is a silver lining.  I think Abbie has, unfortunately through pain and suffering, proven to the school that I am not an irrational, overprotective mom, but rather an experienced, wise advocate for her.  I pray her sacrifice will be honored as we move forward.

We read our Psalms out of Abbie's "Discoverer's Bible" today, which is written at about the third-grade reading level.  The simplicity of the language often sharpens the message.   It was fitting that today we relished once again, in a fresh flavor, Abbie's touchstone verses:

Psalm 27:13-14
Here is something I am still sure of.
I will see the LORD's goodness
while I am still alive.
Wait for the LORD.
Be strong and don't lose hope.
Wait for the LORD.

A Frostie

"Whose woods these are, I think I know.
His house is in the village, though.
He will not see me stopping here,
To watch his woods fill up with snow."


                              -- Robert Frost


These are the first four lines of the poem we introduced to Abbie last Wednesday.  They are also the lines she memorized over the weekend.  How do we know this?  Rae figured out a way for her to prove what we suspected she'd already learned.


Rae wrote half of each line on an index card, she then put three of the cards on the board.  Without reading the choices to her, Rae would ask Abbie, "What comes next."  She didn't miss once.  So, not only was she able to read the cards, written in ballpoint pen at a normal size, but she was able to correctly sequence the lines.  Not bad for three days' work!!


We thought we would show this to her teacher today, and this opened my eyes to the challenges ahead, which are surmountable but present.  Abbie was taking longer to answer, and we finally figured out that much of it had to do with her  positioning.  Because she cannot adjust her own body very well, if she is not in a position that makes it easy to use her switch, she is not able to activate it.  She still did OK, though.  I am just hoping that when she takes a while to answer questions or do her board work the bias will become "what is preventing her from using her switches?" rather than "she is not understanding this" or "she takes a really long time to think."


We've become very adept at making it as easy as possible to communicate, but they've asked me now to step back and allow them to take the lead.  I am biting my cheek as I type, hoping it will stimulate the right words to describe how I feel about that....scared, excited, nervous, hopeful, wary, trusting..it changes from one moment to the next.  But, I do feel that this is the next step in Abbie's Grand Adventure with God, and if nothing else, I trust in Him and in my girl who outdoes expectations at every turn.


One other little "peek behind the curtains."  We've been meeting with dizzying numbers of people in recent weeks to determine and coordinate the appropriate services for Abbie.  This being a public site, any and all are welcome.  However, it turns out that some in our service net read Abbie's website to determine what kinds of services she needs...I am not sure who, but the word we've recently received is that because, according to this blog, Abbie has gotten so much better,  we should be prepared for less services.  


Ray's eyebrows rising to meet his hairline is fair warning that steam will be  erupting from his ears in short order.  The above situation elicited that look, and he curtly asked me to leave the room so he could set the record straight.  I knew what he was going to say, so I politely declined to leave, and spoke on my own behalf.  He was going to tell them that I focus on the positive, the hopeful and the good and that doing so is essential to my survival through all of this.  His point may be valid, but I boiled it down to "we choose to make our victories and progress public, while keeping the challenges and struggles a bit more private"  (except for now, apparently!)  


For whoever is using this blog as an assessment tool...first off, shame on you -- there is a reason we fill out so much paperwork and and coordinate with so many people.  This blog is for family, friends, and fellow trekkers.  These people deserve to hear how wonderful our little girl is doing without the continual layering-on of the reality of life with a brain injury... we never get a full night of sleep; we are constantly battling her body to keep it from contracting, from being injured or requiring more surgery; her respiratory status requires constant vigilance; caring for her is the most demanding thing any of us has ever done.  Unless you have walked a mile, or a day, in our shoes you cannot understand.  That is part of the reason we don't prattle on about it....those who've not been here can't comprehend, and those who have don't need the explanations.


Whew -- I think that qualifies as a rant.  I apologize, but I guess it's reality.  Abbie's soaring cognition is one precious aspect of her life, but the things listed above are always in play as well.  We could really use your prayers for those areas - particularly about keeping her body as limber, aligned and functional as it can possibly be.


Back to our Little Miss, who has become so enthralled with not only "Stopping by the Woods on a Snowy Evening", but  also other works of Mr. Robert Frost (as we call him), that I am now calling her my Little Frostie.  In fact, in her honor, I will close with his sublime words, as they seem so fitting on a busy night:


"The woods are lovely and dark and deep,
But I have  promises to keep.
And miles to go before I sleep.
And miles to go before I sleep."


May God bless you!!

First Day of School

I know, I know...this post should certainly start with the requisite first day of school photo!  It was raining today, so our normal photo-op spot was unusable.  Once we stepped foot on campus, the whirlwind began, and although I did pack my camera along, it never made it out of the bag.  We'll try again tomorrow.

Miss Abbie was awake at 5:30, all grins and giggles, with anticipation gleaming in her eyes.  This day was finally, truly here!  As silly as it sounds, it was an all-out sprint from 6am on to get the boys out the door, and then get her fed, changed, dressed and ready to get out the door by 8:15.

I wanted to dress her in one of her pretty outfits -- you know, "matchy-matchy" from the socks to the hair ribbons.  However, I pushed pause on the "Mommy Plays Dress-Up" game long enough to think about what an average third-grade girl would want to wear on the first day of school.  Jeans it was.  Of course, she rolled to the van looking stylish anyway (and yes, her ribbons did match her shirt...I cannot help myself).  Unfortunately, all the lead-up excitement had pooped her out, and she fell asleep during the drive.

She opened her eyes briefly when we arrived, but then proceeded to nap deeply for the next hour.  I didn't have time to be too disappointed because so many staff members were in the classroom to greet and work with Abbie on her first day.  Speech, vision, public health nursing....I felt like I was the pinball pinging between questions and conversations.  But, it was all fruitful, and I was grateful to have their input from the beginning.

At last, around 10  Abbie really woke up, so I suggested we start the academic portion of her day.  Woo-hoo, was she on today!!!  We are using the same literature-based program we've used at home, and the book we've selected for this month is a book of illustrations accompanying Robert Frost's "Stopping by the Woods on a Snowy Evening."  She was so intent on the words and illustrations, and vocalized quite a bit in response to questions and observations.  The aides could already see that she was intellectually and visually engaged.  One of them did give me a look of surprise, though, when I mentioned that one of Abbie's tasks during this unit will be to memorize the poem.  I think she'll be even more surprised when she sees how fast Abbie will accomplish this.

After we were finished with language arts, we moved to math.  Because her IEP goals were written quite a while ago, she is now way beyond them.  I am thankful God dropped just the right word into my mouth to explain and justify to her why she was going to have to do such easy things.

" Abbie, at the beginning of the school year everyone -- your brothers, your friends, your classmates -- they all do something called 'review'.  Review covers things you already learned, and are easy for you, but you still have to show your new teachers that you know them.  So, today we are going to review your numbers and adding 1"

While this did help her be patient, I have to admit that she got irritated by being asked to identify numbers between 0 and 31.  It reminded me of how aggravated she used to get when I kept making her go through the alphabet.  But, she complied and showed them she knows the numbers .  We then had her do 7+1, which did not take her long.  Because she was getting impatient, we then let her do something like 9-3+1, which made her happier but did not take her long to answer.  Finally, we did let her do one multiplication problem, even though it's not in her IEP.  6x3 did not take her long either.

We did some calendar work, and she was quickly able to pick out 2010 as the correct year, even though her choices were 2009, 2010, and 2011.  Every time the aide or I thought something might be too hard, I just said, "let's see what she does"....she succeeded every time.

We did have a little meeting mid-morning to deal with some miscommunications regarding nursing.  The resolution means that Abbie will be staying at school until 1, instead of 12.  I think this will be a good thing for her, because it means more time to work when she's really awake and ready to go.

She glowed with contentment when we arrived home.  Then, I said the magic words, "Abbie, you get to go to school again TOMORROW!!"  She grinned, as if it were too good to be true.  What a precious angel.  I am so excited about what new levels she's going to be able to reach with a whole academic team supporting her.  Her life just got a lot bigger today, and her spirit is soaring in all that new space.

Happy 2010

I had to write that number in the title just to make it seem real. I can't believe we're already a decade into the new millenium. I apologize for such a long lapse in updates. Catching up is going to require a few separate postings, because so many great things happened in December.

One of the big highlights was welcoming Chase home from college.  We were happily surprised at how much he had matured in just 2.5 months....and thrillingly shocked that he got a 4.0 his first quarter at school!  Abbie was very happy to have Chase back, as she had been getting impatient for his arrival for the last week or so before he came home.  I'm glad that Chase has a late December birthday so we could celebrate with him.

There may be 19 of them, but these candles looked straight out of a Dr. Seuss book!

Can't believe this is his last "teenage" birthday cake!

The week of Christmas was wild: Kyle got his wisdom teeth out (12/21), we celebrated Chase's  birthday (12/23), and attended a wonderful Christmas Eve party.  But, in the end we enjoyed a quiet, beautiful Christmas morning at home. As always, the kids went through their stockings by candlelight. This year I focused on getting video, which has not been our strong suit through the years. So, I don't have a ton of pictures from Christmas , but here are a few:

The host of the Christmas Eve party made an appearance as Santa.  Unfortunately, this did not go over well with the under-2 set in attendance.  The chorus of wee howlers made me grin as their mommies tried to snap "happy" pictures.  I was glad to have a nice picture of my sons -- with no tear-stained cheeks!  My, how far we've come.

Abbie was tuckered out by the time Santa came to visit, but I wanted to get a photo anyway.  

Christmas morning found Abbie snuggling in her new snowman nightgown, surrounded by the world's most faithful elves.

The boys were especially caring with Abbie that morning.  As we were doing stockings, Kyle leaned over and said, "Abbie, would you like your glasses so you could see better?"  He got a resounding "yes" to that question, and the spectacle of Christmas morning came into clear focus for one smiling little girl.

The brothers had asked for just a few things, and so we opened their presents first while Abbie waited patiently (we thought.)  When they were finished we asked, "Abbie, do you want to open your presents now??"  She straightened and raised both of her arms as if to say "Helloooooo!  What do you think? Bring it on!"  She had so many delightful surprises waiting for her....a snowglobe with a ballerina in it, a huge Tinkerbell stickerbook, many cute "school" clothes, an embellished piggy bank, and a scroll fresh from China, with her name in kanji and English.

As we talked about the scroll, a precious gift from friends recently back from China with their new daughter, I was once again impressed with Abbie's memory.  She was enjoying looking at it, but when I told her that it came from China, where Ping the duck lived on the Yangtze River she lit up and began smiling.  We read the Story of Ping last May, and still she remembers...

Yes, there was still tugging on my heart, and thoughts of "how great would this day be if she were 'normal'?"  But, the reason for the celebration soothed my spirit and yet again encouraged me that now is not all there is...we celebrate that which we only know dimly.  When we see in full, any twinges of disappointment or shadows of grief we've experienced will vanish forever.   And...my ballerina will not be in a snowglobe!

Priceless

I experienced some serious stage fright today, on my way to speak to Abbie's future classmates. Not because I was scared of a roomful of third-graders, but rather because I felt such pressure to do a good job for Abbie. I went there to win their hearts, to lovingly ask them to befriend my precious girl, and to be Abbie's voice. I prayed out loud all during the drive, because I felt such a sacred responsibility to Abbie.

The time with the kids was wonderful! They listened intently, asked good questions, and were very upbeat. I almost lost it before I started, as one of the little girls placed a lei around my neck - such an unexpected kindness.

I think it really helped that they met Abbie on Monday. I described some of the special things Abbie has, like a G-tube button, suction machine, and communication devices. We also did activities to help them understand what it's like to have spasticity, and a brain where answers may take longer to process, but are still correct. It was a lot of information to throw at them, but I started and ended with the most important thing: Abbie may be a little different on the outside, but on the inside she is just like them.

Then, I said, "Abbie's invitation to you is to be part of a miracle. There are many who would say she should not be alive. Many said she would never breathe on her own, but she does. They said she would never see - and for a while she didn't. But, now she does. They said she would never talk, but she's trying. They said she would never read, but she does. They said she would never do math...but she loves it. Because of all these things, many people, including me, call her a miracle. Sometimes you have to wait your whole life to be part of a miracle, and sometimes it comes right to your classroom door. So, Abbie would like to invite you to be part of her miracle - YOU can help her get better!"

As I was leaving, Mrs. T, Abbie's regular-ed teacher handed me a book made by her classmates. How do you turn printer paper into gold? Cover it with love, and illustrate it with joy. On each page was a picture of one classmate, along with a letter written to Abbie. Although I cannot scan any of it to show you, I must share some of the phrases that brought tears to my eyes.

One girl ended her letter by saying, "If anything ever happens to you, I will always be there for you." One boy ended his letter with, "We will be happy to have another member of the class." A girl said, 'I will teach you how to do something you like to do at school." Such tender hearts!

Abbie looked carefully at each photograph, and was excited to hear how many of her classmates also enjoy reading, math, and music. At first, she will mostly see her classmates on the playground, but I am even more hopeful now that she will not be lonely out there! What a precious, long-awaited gift they have to give Abbie, and what fills my heart is that they realize it, I think. They glimpse the special role they may play in a very special girl's life.

God is good!

Spectacles

We visited the neuro-ophthalmologist for the first time in four years last Friday. So much time had lapsed because I didn't really see the need for frequent follow-ups, since assessing Abbie's vision with charts was pretty much impossible.

Once again, Abbie's journey has made me thankful for technology. It turns out that there is now a computer that can measure and test the eyes without any participation from the patient. The optometrist got the first measurement, said, "hmmmm", and then repeated it. The machine spit out readings that showed Abbie is pretty darn near-sighted. She is now about the age I was when my eyesight went off the cliff.

We then saw the ophthalmologist, who confirmed the readings the old-fashioned way, with a light and varying lenses, which was even more impressive to me than technology. He got the same results. -3.75 in one eye, -3.25 in the other. He felt that since she is reading, and has enough vision to see near objects, we should not feel required to get her glasses. My bias, however, is to make everything easier for Abbie whenever I possibly can. I think that her nearsightedness could explain why she does not engage in things across a room, rather then just chalking it up to brain injury as we've always done. So, I am excited to see if a cute pair of glasses (pink and purple are available) will broaden her world.

Speaking of broadening her world, Abbie went on her first school field trip on Monday, even though she hasn't officially started school. We met all the third-graders at the high school gym just up the road. The high school "Health Academy" students were putting on a health fair for third-graders from many schools. So, it was noisy and full of energy. Abbie had been on oxygen earlier in the morning, prompting a decision to cancel. But, once she got better, we went because I knew her heart was set on it. I am so glad we did.

The regular-ed teacher is wonderful, and assured that Abbie was included in everything. At one station, empty packages of various snacks and drinks were passed out for kids to assess their sugar content. Abbie looked at hers carefully, and then we measured out the 22g of sugar to see exactly how much of it is contained in 5 little miniature Reese's peanut butter cups. Yikes!!! Don't think I'll be eating any more of those....ever.

Mrs. T, the teacher, had read part of a story I've written in Abbie's voice to the children, explaining her life. They were very curious about Abbie, but the forum did not allow them to interact with her much. I will be going to read the rest of the story, answer questions, and do some show-and-tell this Thursday. Would you please pray that most of all I can leave them with open hearts, so that Abbie will be warmly and boldly welcomed in January?

Another spectacle today has caused a time of introspection for me, as it has for many in these islands, I am sure. "The Eddie" ran today -- or, more properly, The Quicksilver in Memory of Eddie Aikau Big Wave Surf Contest. For those outside Hawaii, this contest can only be run when waves top 20 feet, so the last time it ran was 2004. Today, with wave faces of 35-45 feet, Waimea Bay was packed with folks watching out for the figures dwarfed by the waves. Brave, crazy, both? But what gives pause is not only the improbability of surfers riding life-threatening waves, but remembering Eddie, a man who perfectly embodied John 15:13, "Greater love hath no man than this, that he lay down his life for his friends." You can read a good summary of his story here.

Striking, shocking, willing sacrifice. And while I am sure that people like Eddie would disagree with those first two adjectives, I pray that we more often are struck by goodness, shocked by love, and inspired to magnify those qualities in our own lives.

"Eddie Would Go"....and so should we.

A Theme to Match the Times

All of Abbie's recent changes merited a change on her site, so - voila! Welcome to Abbie's garden of miracles, complete with fluttering butterflies! I can't wait to see the what kind of flowers are going to bloom in the coming months.

We spent a beautiful long weekend out in the country, at a beachouse at Malekahana. Our yearly small group "camping" trip is always much anticipated, but the flavor is different each time. This year it was sweet-and-sour.

The beauty of the raging ocean, the lushness of the open land, and the freedom from all the demands on the homefront are uplifting and rejuvenating...sweet. Being away at a place where all the other kids are running, playing, building an awesome fort, and generally too busy to engage with Abbie...sour. I don't realize how different our life is, how different Abbie is, until we are surrounded by "normal" 24 hours a day. My heart just hurts for her, and I realize that as her brothers, friends and peers grow older, the bridge between them gets longer, and the distractions that keep them from crossing to be with her are multiplied. It just presses me to pray harder, plead more insistently, and believe more fervently for her restoration. I would be so encouraged if you would join me in this effort.

Abbie was more than ready to get back to therapy on Monday, hopeful that she would be able to walk down the hall. Unfortunately, she was encouraged in these hopes by an unwise mother. I did not know the therapy plan for the day, so I talked to her about walking all morning. Oops. The therapists wanted to focus on her arms instead. That will teach me! Despite her disappointment, Abbie worked hard, and was able to bring her head up when laying on her tummy and leaning on her elbows. She would lift and I would hold it until she wanted to lift it higher. I was very impressed, since this is not something we've been working on.

We're still trying to work out the nursing support at school, so we don't have a firm start date yet. But, we did receive another packet of homework, so Abbie is working on the same spelling and vocabulary words, and math problems as her soon-to-be classmates.

I may not get a chance to post again before Thursday, so let me say now how deeply grateful we are to each of you who choose to follow Abbie's journey, pray with and for us, and continue to believe that with God, all things are possible.

Have a blessed Thanksgiving!

Maddening Disappointment

I truly believe that many of Abbie's recent advances are the fruit of her stubborn persistence over the course of many years. SHE would not quit, even when all those around her wilted at one time or another. So, it makes me smile when I can see that feisty streak in full bloom.

Monday's therapy session included the use of the Walkable, a harness device that would allow Abbie to stand for longer periods during our sit-to-stand practice. Unfortunately, Abbie heard it as "WALKable." When we first got her up, the harness was too high, so she was suspended in the air. Her little legs started going like mad...back and forth, back and forth. They did not stop until we had her feet back firmly on the ground.

We practiced sit-to-stand several times and she did well. When we were done, we got her out of the harness and laid her on the mat. She was so enraged that her face turned splotchy, which is rare. We thought maybe she was having an allergic reaction of some kind. Yea -- she's allergic to disappoinment, alright. When we figured out that she was just ticked off, we asked her why...and those little legs atarted going again. Up and down, against gravity, with her heavy tennis shoes and orthotics on...not easy to do for her. We had to spend time reassuring her that we are working through the process to get her walking again -- obviously not quickly enough for her liking!

I LOVE it that she knows so clearly what she wants, and is using her body to demonstrate her desire and readiness.

Other things are emerging as well. Maria did quite a bit of work with Abbie this morning. A little while after the session, Abbie sneezed several times, and then looked at Genevieve and said, "you, you, you, you" and grinned. We couldn't tell if she was playfully blaming Genevieve or asking for her help, but the clarity of the word was striking. Our little butterfly is coming out of her cocoon!

A short Mrs. Kravitz follow-up for Lost fans: It was quite the to-do on filming day last Tuesday. By the evening, they brought in enormous lights on cherry pickers and lit up the street. We were sitting on our front lawn having dinner, watching it all. Ray took that opportunity to remind me that if our hedge weren't dying a slow death (which I've been known to complain about), we wouldn't have had front row seats.

Then, one of the crew came to tell us that we would be in the shot if we stayed there, and invited us across the street for a close-up view. Show business is NOT glamorous, and I don't envy the actors who show up after the crew has been working for long days preparing...talk about pressure to perform!

Genevieve had taken Abbie to the mall, and walked right into the outdoor "set" on the way home. Unbeknownst to her, the corner in front of our house was lit up for a reason, and it wasn't just for her. She stopped there with Abbie to watch what was going on, which soon resulted in a voice coming over a bullhorn saying, "Excuse me, but if you continue to stand there, you are going to be very famous!" Genevieve then disappeared with Abbie into the shadows, on the way to our side door. A moment later, we heard the same voice say, "We can still see youuuuu."

If you are a hardcore Lost fan, be on the lookout for a scene with Ben Linus, where a girl comes to the door (I heard she plays his daughter??) and he talks about how he should have left a note on the door earlier. It seems as if they were shooting over his shoulder, so the (dying) hedge, stone wall, and wrought-iron fence you see are ours...woo-hoo, we are (almost) famous.

One last thing I feel pressed to share. Abbie was sick briefly last week (103 in the morning, 99 at night...that girl is strong!) As I was keeping watch through the night and into the morning, I picked up her Bible to read whatever opened up. 2 Kings 4 - a familiar story about the widow about to lose her sons to slavery. Elisha asked her what she had to repay the debts with, and she told him, "nothing but a little bit of oil." He instructed her to go to all her neighbors and ask to borrow empty jars, and "not just a few". Once they'd gathered the jars, she and her sons closed their door and began pouring.

Verse 5 caused me to stop cold. As long as there were empty jars, the oil kept flowing. But, when the widow asked her son for another jar, and he answered, "There is not a jar left" the oil stopped flowing.

What struck me in that moment is that as long as we offer God our prayers, his spirit will keep flowing. And, just like the widow, all of the jars are not in our own homes...often we must ask our neighbors for their jars, their prayers. I pray that we would become bold in asking for prayer, and in praying for others so that we would never have to say, "there is not a jar left - there is no more room for God's spirit to move."

Since I read that passage, the Lord has brought some exceptional people into my life that need a jar or two, or ten. Go check your cupboards for jars, and then watch to see who comes to your door.

Kindness from Every Corner

I suppose when things are going well, the whole world looks sunny. That's sure how it's seemed around here lately. Every time I turn around, someone pleasantly surprises me with thoughtfulness.

I must admit to being a bit of a Mrs. Kravitz at the moment...curious and crabby rolled into one, because the TV show Lost is using a house across the street for filming tomorrow. In preparation, the "No Parking" signs appeared out of the blue on Saturday. I was miffed, not knowing the reason that we apparently would not be able to park in the same ZIP code as our home -- the barricades with notices were everywhere.

Yesterday we found out it was Lost, and watched a crew move the normal furnishings out of the house, and move the set furnishings in. As I type, all the semi-trucks are moving into place outside. I was concerned about how we would go anywhere with Abbie if we had to walk over a block to the van. It takes more than one trip to get all of her stuff into the van, along with her.

I decided to be the modern version of Mrs. Kravitz, who simply stews and doesn't open her big, cranky mouth. Good thing, because it allowed me to receive the gift of compassion. We were loading Abbie up for therapy today when one of the crew guys walked by. We chatted for a moment about Abbie's chair, and then he disappeared. He came back with a security guard and the location manager in tow. Devon, the location manager, told me -- "You just park your van right in front of your gate tomorrow...just disregard those signs. If anyone hassles you, come see me right away."

It means so much when people can see with their own eyes, and hearts, without explanation or request. I'm back to plain old me now....well, almost. There's enough Mrs. Kravitz left to ensure I'll be parked in my living room tomorrow, overlooking the goings-on across the street.

We then went to therapy - and had more excitement. We've been working with Abbie's arms intensely using a method Maria showed me last week and an oil I created. Pardon my lack of humility here, but we have achieved stunning results so far. Not only are we getting the arms to open up, but we are getting inward rotation, flexible wrists, and open hands. I was so happy to share this progress with our faithful therapists.

Then, Abbie got to do her favorite therapy exercise: sit-to-stand. She loves being in charge of her body, and "telling" us when she's ready to stand by starting the move herself. She looks amazing on her own two feet (with Lynette supporting her.) After a few iterations, we measured her knee flexion to compare to the measurements we'd taken before beginning. She broke her records for both knees today!! 75 degrees!

After bring Abbie home, I went to her school toting the medical paperwork we needed to complete the enrollment process. I must say again, the staff just blows me away. A packet was waiting there for me, but before I could open it, the principal came out and wanted to introduce me to the counselor, who was coordinating an upcoming field trip. You see, we don't know exactly when Abbie will be starting school, but even so, they have already planned to include Abbie in the field trip. They had a permission slip for me to fill out, and we made plans for us to just meet them at the site, since it's two blocks from our house. They are going SO far out of their way!

Once I opened the packet, I just blessed the name of our new Teacher-Angel, Mrs. T., the regular-ed 3rd grade teacher. She had included three baggies of seeds for Abbie to do the science experiment, as well as worksheets for the current language arts chapter. What thoughtfulness, and willingness to go the extra mile for a student who is not even technically hers yet.

Blessed, blessed, blessed. That is how I feel tonight!

But, in the midst of all our joy, there is a reality check and sorrow. One of the links on the left side of Abbie's blog says "Tori Schmanski." Tori was a beautiful, bright, dancing teenager when the car she was in ended up in water. She had the same kind of injury Abbie does. Tori passed away on November 7th, leaving behind a family who did everything, EVERYTHING they could to support, nurture and heal her. I can't say that events like this, sudden turns like this, don't haunt my heart, even on days as shiny as this one. Please, pray for the Schmanski family tonight.

All in the Right Timing

As we've learned so many times along this way, delays and detours often lead to answers better than we could have hoped for in the beginning. Today, was verse number four of that song.

In the morning, we took Abbie to visit her potential classroom at Ali'iolani elementary. She was excited to see the other kids, meet the teachers and aides, and see the room. As I talked with Paul, the teacher, and looked at the layout of the room, I began to share Abbie's excitement.

Then came the screeching of mental brakes...I learned that all of the third-grade (as well as second-grade) classrooms are upstairs. There is no elevator. My hopes of her having time in a normal classroom evaporated, and I tried to hide my disappointment until I could really reason through it. We had a meeting scheduled with the whole IEP team later in the afternoon, so I figured we could talk about it then.

I sought counsel from a trusted special-needs mom, and talked a bit with Ray. Mostly, I felt like a melting Jack-o-lantern. My hopes had been burning so brightly, but now the candle was snuffed out and my smile began to turn down at the corners.

I arrived at the meeting with a knot in my stomach -- so torn because I truly like every member of the team at Ali'iolani, but I just didn't want to trap Abbie away from her peers. I am glad that Ray and I opened our ears more than our mouths! As we outlined our concerns, as well as Abbie's recent cognitive explosion, not only were we able to come to reasonable conclusions and create workable plans, but we got to know the team even better...and realized how profoundly blessed we are.

Just some examples:

* I showed them Abbie's curriculum when they visited the house, one of which is a homeschool curriculum. Not only have they already researched both in-depth, but they have already ordered them to use with Abbie, to ease her transition to school.

* The teacher showed me a consent form for videotaping in the classroom, and asked if I would strongly consider signing it, because when the therapists visit his kids, he tapes the sessions so he can make sure he is working with the kids correctly.

* During the meeting I asked the third-grade teacher present if at some point I could look at the third grade content to ensure Abbie would receive all of it. After the meeting she pulled out each of the texts and workbooks, walked me through each one, showed me where the class was now at, and gave me copies of blank worksheets they have already done.

* Abbie's teacher mentioned that he is very into technology, computers etc, and runs the Lego-robotics activities at the school. I told him that thrilled me, calling technology "Abbie's bridge to the world." He smiled and said, " You know, I am really thinking of her as more of a Stephen Hawking....she is so intelligent, we just have to find a way to get it out. I see her as more of a 'Resource' kid than an 'SMI' Kid, and I was a resource teacher for three years before moving to SMI, so I am very familiar with that."

I had to ask him to define those terms for me: SMI means something along the lines of "severe, multiple disabilities", while "Resource" means just needing some extra help or different adaptations to learn. He already sees her for who she is, and is very willing to welcome me into his classroom to help everyone get to know her better.

We are hoping that we can get all the necessary paperwork done to have Abbie start in 2 weeks or so. If you happen to have children at Ali'ioilani, you should be very proud of the staff and school. I have, at times, had severe reservations about the Dept. of Ed's ability to deal fairly with a girl like Abbie. I knew it would take just the right people to gain my trust...and today we found them!

Abbie also had a lot of fun on Saturday, dressing up as Alina, the butterfly princess from one of her beloved Barbie movies. We even decked out her chair with some butterflies, ribbons and streamers. I was so sick that I missed her morning therapy session, as well as her trip to the mall that evening....but, faithful Auntie Rae took this picture on her phone for me:

He Made All Things Beautiful

This morning began with a group of very nice visitors -- the principal, special services coordinator and special ed teacher from Abbie's potential school, along with another woman from the district, came to see Abbie and what she's been up to lately. The Purple Board was front and center as they walked through the door.

Abbie was a little sleepy, but did do some math problems. I also showed them the book where Rae is carefully recording her progress. As I told them "She's changed since the meeting on September 15th", the depth of that understatement made me smile. They were very interested in all of her curriculum, and in her general needs. They are open to me going to class with her to train everyone, and help them get to know Abbie better -- which is huge relief for me. Her class already has 5 kids with wheelchairs, so she will feel right at home. But, we will talk more next week about mainstreaming time with regular ed. classes. Her intelligence and ability to learn rapidly is making me think more and more that she belongs with regular kids, learning the same material, and expressing her knowledge in adapted ways. I also think being around kids who walk, talk, interact and learn quickly will be motivating and enjoyable for Abbie. We'll see.. But, the bottom line for today's visit is that I was really encouraged by how kind, open, and interested the staff members were.

After the visit, Abbie began working on her Cubbie verses. Which, for most of you requires a little backstory. "Cubbies" is the preschool section of a church program called Awana that all our boys did. As Cubbies, the twins wore bright blue vests, and earned patches for the vests by memorizing verses.

Shortly before she was injured, we were cleaning out the garage. Abbie found her brothers' old vests, along with a "Cubbie Bear" backpack. She promptly donned both things and marched around the garage proclaiming that she would soon be a Cubbie. September wasn't too far away, so I was excited to think about her being a Cubbie, too.

That September is long gone now, along with that sassy two-year-old. However, as she began blossoming lately I thought, "I bet she can memorize verses!" Cubby verses are short and simple, so I figured that would be a good starting place. I asked my friend Sandra, an Awana leader, if she could get a book for Abbie.

Well, Sandra mentioned this to one of my favorite ladies at church, who wishes to remain unnamed, but is the Cubbie's leader. She said, "Oh - not only will I get a book for her, but also a Cubbie bear and the finger puppets that go along with the story. I was waiting for her that fall, and so looking forward to her being a Cubbie..."

I wept when Sandra told me that -- even now, we are not the only recalling the loss.

Abbie was THRILLED when I showed her the Cubby bear, and kept the finger puppets on for hours. Then, the work began. I introduced about six verses, to catch up to session three, where the group is now at. I told Rae all about it this morning, and we devised a way to test Abbie's memory. The deal is - if she memorizes the verse, she gets a sticker for her book, so she is VERY motivated.

I'd written the verse in entirety on an index card, and then each word separately on cards. We put the whole verse up and had her find the words in order. Then we took the verse card down, put some of the words up and had her fill in the blanks, which she easily did. Lastly, we took everything down, and Rae simply said, "I want to see if you've memorized it" without even detailing what "it" was.

Abbie correctly chose every word, in order, without missing once. She then picked out the Scripture reference from a choice of three. Here's what she "said"

"He made all things beautiful. Ecclesiastes 3:11"

Indeed!!

Abbie in the News

I almost titled this post "We Have a Witness!!" because as part of the news story, a very kind photographer visited our house. Dennis Oda, from the Honolulu Star Bulletin spent an hour with us, capturing Abbie doing many different things, most notably, multiplication.

We seated her in her chair, set up a complex problem, and let her go. When she picked the right answer, I held it in front of her face and asked if that was her choice. She gave me audible confirmation, which elicted a "Wow" from Dennis. Finally! Rae and I were so relieved to have a third party witness what she can do....if only it had been on video.

The day before I'd spent almost an hour on the phone with Christine Donnelly, whose talent became obvious to me when I read the article that she produced from that interview. I think she made me sound much more coherent than I felt I was in the interview.

Here's the link:

Name in the News: Tiffany Vara

I owe Christine, Dennis and the Star-Bulletin a huge "Mahalo" for bringing generous and positive attention to brain injury recovery.

My interview with Christine also presented me with a challenge of opportunity. For the past several months I've been working diligently at preparing a company for launch. I felt I was about a week out from a soft opening the day I talked with her. When she told me the piece would run on Friday, and would include the web address, I said, "Well, it will be open Friday!"

I hung up the phone and wondered what I'd done, and if I could pull it off. A little sleep deprivation and lot of typing later...it's done! So, I would like to invite you to visit Matrisse, my wellness company built on everything that Miss Abbie, and many generous teachers have taught us through this journey.

Abbie and I have been keeping in our routine of reading Psalms in the morning. Sometimes, when I am certain no one is within earshot, I even sing them to her (making up my own off-tune melodies as I go). One that we read this week seemed penned just for her:

Psalm 20: 1,4-5

May the Lord answer you when you are in distress;
may the name of the God of Jacob protect you.
May He give you the desires of your heart
and make all your plans succeed.
We will shout for joy when you are victorious
and will lift up our banners in the name of our God.
May the Lord grant all of your requests.


I see Him answering and protecting her daily. I know some of the desires of her heart, and can guess at a few plans, but I think there are many that remain just between her and God. In these recent days, however, I sense God pulling back the curtain just a bit, and revealing the giggling girl full of anticipation and excitement who has been waiting to burst forth.

My spirit shouts even now, while at the same time I hear "You ain't seen nothin' yet!"
May God grant the mercy and grace for us to see her completely victorious.

Multiplication

Saturday morning found Abbie at one of her favorite places - the University of Hawaii. No, despite all her recent gains, she's not going to college quite yet, but rather was reunited with her long-standing group of friends who also use devices to communicate.

Abbie was not able to participate in the Saturday morning clinics last year because of all her surgeries, so we are both excited to be part of it again. I really liked her student-therapist, and am looking forward to receiving help figuring out how to keep pushing, and opening doors for, Abbie.

In the parent conference at the end I was gleefully detailing Abbie's recent academic progress, which led to a lengthy discussion about how we give her more choices from which to select answers. The short answer is -- it's difficult right now, and will be changing.

The longer answer is, we are going ahead with planning for the hand/arm surgery. The meeting we had on Thurs. was a parent's dream. For all you special needs parents out there -- can you imagine having every single therapist you work with AND the orthopedic surgeon in the same room? There's a lot to figure out, as a team, to determine exactly what the procedure will look like, but at the end of it, she'll be spending four weeks in casts.

I feel guilty for the fact that I can so easily dismiss the arm casts as a concern -- but after two spica casts, they seem comparatively inconsequential. Not for Abbie, though. She did NOT look happy during the entire meeting. I keep reassuring her that she will not wake up with a huge leg cast on, and that it won't be nearly as painful (I am hoping!!). I continue to explain all the things that will be easier -- using communication devices,fingerpainting, drawing, having her nails painted...it doesn't seem to make a dent in her well-earned resistance. This just boils down to one of those times when as a Mommy I have to choose what is best for her even if she disagrees.

After working hard at UH for three hours, Abbie then came home and did over two more hours of school work. She would not quit. We hadn't planned on introducing multiplication for a week or so, but since she wanted more...we gave it to her.

After being with Abbie all morning, I was spending time with Ray and the boys while Rae played tutor. She introduced "groups of numbers", as in "two groups of two". Using this method she introduced the twos times table up through 6, which Abbie quickly picked up. For 7,8 and 9 she simply put up cards that said 2x7, etc. Abbie did not miss one.

At the end of their session, Rae beckoned me in to see the last problem Abbie had worked correctly:

2 x 5 + [picture of four dots] - 6 + 11 - 2 = 17, with choices of 17, 23, and 14.

I giggled like little girl getting a lollipop. But, Abbie wanted me to see for myself, so she insisted on one more.

We set up the following problem:

2 X 6 + [picture of five dots] - [picture of four dots] + 13 - 2

Rae and I had to signal each other behind Abbie's back to make sure WE had done the problem right, so that we could include the correct answer in her selections.

It took a while, but Abbie eventually chose 24 (and, so you don't have to do the problem...she was right.) I wanted to confirm it was her choice, so I got the 24 card from the board, and held it in front of her and asked, "Is this your choice?" With more than a hint of indignation, she used her voice to make sure I knew that's the one she wanted...I had to laugh.

When I told Matt a few days ago that Abbie understood subtraction, and that we were planning to show her multiplication next week, he added "and the week after that...astrophysics." Put another way, her speech therapist said, "I want to improve her communication access so that we can find her upper limit...because I am not seeing it yet." I went looking for it today....I stepped outside, looked up at a clear, blue sky and said, "Yep, there it is."

God is good.

More Math

We have decided to keep a composition book to better track what Abbie does each day during "school." Since she had been excelling with addition, we thought it was time to introduce subtraction.

Rae started out the same way, asking, "If you have three circles and I take away two circles, how many do you have left?" Abbie selected "1" as her answer, and thus concluded the entirety of instruction about subtraction.

With that simple little lesson, Abbie went on to correctly answer:

[picture of three circles]-[picture of two circles] - during this problem she was again asked "if you have three and I take away two, how many do you have?

5 - [picture of 3 circles]

9-5= [picture of 4 circles] -- the only thing said to Abbie was "Find me the answer"

Then, we decided to challenge her, and mix it up a little bit.

9-5+3=7
10-2+[picture of three dots]=11
10+12-[picture of four dots]=18 -- on this one Abbie needed to hear what many children working mixed problems hear, "Pay careful attention to the signs"
10-3+24=31
12-3+4-10=3

Wowza!!

So, if that's what she can do on Day One of subtraction...look out for multiplication and division coming right around the corner!

We'll be having a meeting tomorrow with her orthopedic surgeon and all of her therapists to discuss a possible hand/arm surgery. Her thumbs just love to lay on her palm, which makes it hard for her to use a joystick, and other communication aids. Her arms rotate out, which again, make access to communication devices more difficult. Dr. B. can remedy both of these situations through surgery. We will be talking as a team tomorrow to determine the what/how/when of the procedures.
Although I'm never thrilled about surgery, when I see how her quality of life and ability to do things has improved as a result of the major hip/leg surgery, I project those results onto her arms and hands and imagine what she'll be able to do -- especially with communication. Please pray for wisdom in this area.

Abbie was very excited to find out today that her faithful friend Cassidy will be welcoming home a little sister from China in December, after a 3.5 year wait! We can't wait to meet her!!

And, I must send out hugs and prayers to my extended family in Illinois. My Auntie Lavonne passed away last night, leaving a husband, eight children and many grandchildren. I wish I could be there with you as you say "farewell" and celebrate the thought that her suffering is over and she is in the presence of God in a perfect body!

Riding the Same Ol' Train

If you've read the recent purple board updates, you know we've been thrilled with Abbie's academic progress lately. Over the years I have learned the lesson, though, of not taking what she is currently doing, or the speed at which she is progressing, and projecting that into the future. You have to celebrate the victories for what they are in the present, not as precursors of future gains. Most of this past week reminded us once again, that we are riding the Brain Injury Train, and let me tell you, it is certainly not an Express!

Abbie didn't have a lot of interest in school work last Saturday and was giving random answers just to get through it (as many kids often do.) We thought perhaps she was distracted by excitement over that night's plans to attend the symphony. You should have seen her....all dressed up and riding in the van late in the evening, she was all grins - knowing she looked beautiful AND was up past her bedtime. The symphony was a wonderful experience for her, since we do many of her exercise sessions to classical music. Abbie was so excited to hear real violins, cellos, flutes and horns! It was an especially appropriate performance for Abbie because one of the actors from Lost narrated The Story of Babar (delightfully, I might add), with musical accompaniment and enhancement. Although she konked out at intermission, Abbie had a memorable experience. Once again, it was made possible by the generosity of caring people! A woman that has never even met Abbie, but hears about her from Genevieve, purchased tickets for our entire family. Since the boys had plans, Genevieve's family came with us. Amazing. At eight, having already been to the ballet and symphony, Abbie is becoming quite the cultured girl.

Her disinterest in school, and most everything else continued through the week, and she just seemed very far away. Those kind of days are difficult for me, and when they pile up I begin to wonder if the good days were just a mirage I dreamed up

I started focusing on some specific interventions on Thursday, and she had a pretty good day in PT and Speech on Friday. Even better, she was smiling all day long. And then today, I arrived home from a very long day today to find this note from her nurse, Rae. I love it when someone writes an update for me!!

"Hi Tiffany-

Since we didn't get much of a chance to talk today, just wanted to fill you in on how smart our Abbie really is. She is using her eyes, and working hard, as usual. When she has a good day, she really has a good day.

She was able to look at the purple board and do the following math problems by herself. I didn't say anything to her about what the numbers were or anything, except asking her to find me the answer. She did 9+8=17, 9+8+10=27, 23+2+5=30. I can't believe how far she has come!! I'm so so proud of her, and I can't imagine what you must be feeling.

OK, so if you think that was amazing, she just did 23+12=35, with choices of 35, 31, and 50. Correct!! 23+27=50, with choices of 35, 31, and 50. Correct!! 23+27+12=62, with choices of 62, 30 and 75. Correct!! There is no stopping this girl. She is on her way to college! Unbelievable. And, all by herself without any help from me at all! I honestly did not say anything to her at all. I am speechless!!

23+31+[picture of four dots] = 58 Correct!!
23+31+30 +[picture of three dots] = 87 Correct!!

Now I'm puzzled as to how she is figuring out the answers! She can't be counting because those numbers are way too big. All I can say is WOW!! AMAZING!!

23+31+30+[picture of three dots]+26 = 113 CORRECT!

I wish you were here to see this because you probably think I am crazy -- but she really is adding!

And the problem of the day:
31+11+25+[picture of three dots]+24= 94, with choices of 110, 94, and 86. CORRECT!

I tried to call you to let you know how she was doing and to put a smile on your face...

Abbie is unbelievable and is going to continue to thrive if we push her!"


I was stunned when I looked at the purple board, and saw that last problem there. I have not one clue how she can accurately add up numbers in a problem that spreads over two rows of flashcards. When her brothers saw the problem they said, "Whoa...I would need a pencil and some time to get that right!" They were then silent for a moment, as the depth of Abbie's intellect finally sunk in.

"Mom, I think she is brain child," said RJ without a trace of irony in his voice. "I think maybe her brain injury worked backward. Instead of killing cells, it created a whole bunch of new ones." His precious still-childlike logic made me smile.

Matt added a very observant, and I think, accurate, assessment. "I think that since she can't move her body, she is able to focus her brain very, very well."

The clickety-clack of the Brain Injury Train wheels always sings out the same song: "Who really know? Who really knows? Who really knows"

No one -- not about why the frustrating, heartbreaking confusing things happen, and not about why the incredible, hopeful, confusing things happen.

We just have to keep on riding, taking the valleys with the hilltops, ever trusting the Conductor, and celebrating when His grace is shown in such amazing ways.

Authorizations and Appointments

This has been a week when we've truly realized that having a special needs child is a full-time job. I feel like I've been pinging from meeting to appointment to meeting to phone call.

On Monday morning we were joined at our PT/OT session by the medical director of the managed care company that authorizes Abbie's therapies, along with a care coordinator. I was very nervous about this visit, and the meeting that would follow therapy, because I worried that Abbie's access to therapy would be cut off. After all, she is over five years out from her injury, and I didn't know what kind of progress they would be looking for to justify continued therapy.

I was encouraged to find out that the medical director is a physiatrist, and had a long history of working with brain-injured patients. She was very observant, and gave Abbie time to respond to requests. Abbie did her part by having a very "on" day, thank goodness. She did well in the sit-to-stand practice, and then she activated the power chair when was she asked to do so. All the while, though, during her brilliant performance, I was dreading the post-therapy meeting.

It turned out that all the chatting we'd been doing during the therapy sufficed as the meeting. As the session drew to a close the Dr. turned to me and said, "So what I am thinking is one OT/PT session and one PT/Speech session per week, and then we'll reevaluate in three months because she is changing so quickly." I almost cried.

I told her how very grateful I was to not have her put the "fill in the blank" (e.g. "one year out, "two years out") limit on Abbie's recovery. She answered "Oh no..not with an injury this diffuse in a child, you just never know, you never can tell. Let's just she what she does."

We got home just in time to prepare for the next meeting, with the folks who authorize Abbie's nursing hours. Back in July we were told that her hours would be cut from 30 to 2-4 per week. We were trying to prepare ourselves for this axe to drop on Monday afternoon. We were told that while cuts are on the way, they cannot be implemented until a new policy is written, which could be December or January. So, we have a reprieve for now. After two hours in that meeting, my head was spinning, but I was relieved to be through it.

Yesterday morning we received a call from our neighborhood school, who determined they could not care for Abbie, to tell us what school had been selected for her, Ali'iolani Elementary.

We've set up an appointment for their staff to meet Abbie, and are trying to set one for Ray and I to visit the school. We will also have to have more IEP meetings, especially since Abbie has now met many of the goals we set for her just last month.

Yesterday afternoon I took Abbie to see our fantastic orthopedic surgeon, Dr. B. We started out with Xrays of her spine, hips and femurs, which were fine. We discussed the timing of taking out the hardware in her hips and femurs. I was hoping it wasn't a strict one-year timeline, because that would mean an OR trip next month. Nope - no time pressure on that front, we could wait up to a year.

But, there was discussion about the possibility of a completely surgery. Abbie's thumbs are contracted are pretty glued to the palm of her hands. In addition, her forearms always roll to the outside. Dr. B. can do a procedure to release those stubborn thumbs, and can reroute tendons to rotate her arms to a normal position. I wouldn't consider this surgery, save for the fact that there is now a huge upside. Abbie's communication and expression has been exploding lately, and with open thumbs and properly-rotated arms, her ability to access communication devices (and the power chair) would be greatly increased.

I was thinking about pushing this procedure off quite a while when Dr. B. made a very compelling point, "Remember that her hand is her communication tool. So, think carefully about how far down this track of new communication devices and methods you want to let her progress before you knock her back with a surgery and then have to adapt to new positioning." Hmmmmm, he is so right. We are going to schedule a meeting with him and all of Abbie's therapists so we can decide what (and when) is best. Please pray for wisdom for us in this matter.

Abbie continues to change and progress in amazing ways. Today, as we did our morning "dancing" session, a new, very foreign thought came to my mind. As she shows us how quickly she learns, how ardent a learner she is, and as college for Abbie has crept into my mind, that lead to "what then?" Today, I imagined her life as an adult, and for the first time since the day she was injured I considered that Abbie may live apart from us as an adult. Perhaps not independently, but "on her own". I didn't know how to feel about that at first, as I've grown to assume she'll be my forever daughter, always with me. I now suspect she has much bigger plans than that!

The Purple Board Part II

Abbie has astounded us today to such a degree that I promised her I would sit down and tell you all about it right away. That Purple Board seems to be the tool she has been waiting for, as we are finding intelligence beyond our dreams.

Ray and I got home from Matt's cross-country meet and RJ's football game today to find Abbie "doing school". Today, Abbie was shown the words "Christmas", "Thanksgiving" and "Halloween" once, along with picture cards that depicted each day. After being exposed to them once, she knew them! Not only that, but she was able to pick them correctly out of three choices.

Until now we have only been giving Abbie two choices, one on the right and one on the left. Her nurse, Rae, wanted to challenge her, so gave her a third option that was her "up" choice, requiring her to lift her arm to select it.

She built sentences that said things like "Christmas is on December 25", with her responsibility being to choose "Christmas", "December" and "25". The stunning thing about that particular sentence is that we hadn't really taught Abbie December yet, as we have been focusing only August, September, and October. Somehow she either read it or deduced the right answer. She also chose 25 promptly when her other choices were 27 and 31, so it wasn't an obvious choice.

Then, Rae decided it was time for math. I felt confident Abbie understood the concept of addition, but we haven't really worked on it. After ten minutes Rae came to get me to say, "1+1, 1+2, 1+3, and 1+4...so easy for her".



Abbie was continuing to choose from three options, which required her to use her body very precisely. Hmmmm, we wondered...how much more math could she do. This picture answers that question:




It took Abbie less than ten seconds to look at this problem and select the right answer. She also correctly answered 2+5. She is so incredibly happy when she is at work, and able to exhibit her intelligence. Her reading, and more fundamentally, her vision, are blossoming at rates that takes our breath away.

OK....I was just finishing the sentence above when Rae came in and said, "I think you
ought to leave the camera with me." Check out the problem below!



You can see how the selections are set up on the left and right, and the "up" position. Abbie correctly chose 9 as her answer. The sensation of pleasant shock is making my hands tingle as I type. There are NO limits for her!

You would think, with all of this future-altering progress, that I would be walking on air. The frustrating thing about sadness and grief is that they are so illogical, coming in waves at times that make no sense. Perhaps because Chase's departure is making me realize my days of hands-on mothering truly are numbered, I have just been very down these past few days. I am not a woman given to fancy jewelry (I don't feel as bad with 11 single earrings if they are cheap), but I realized, when we went out for the last family dinner before Chase's departure, that my children are my jewels. Being seated with four sons around me made my blessings so extravagantly obvious. I am a very rich woman indeed, in the things that truly matter.

Still wallowing in the blues, I answered the door this afternoon for the pizza man, bringing lunch for our inpromtu gathering of teenage boys. Many of them were outside, which caused him to ask how many kids we have. When I answered "five", he smiled and said, "Wow! I used to have a son but he died three years ago."

Now, this particular pizza man knows us well, and I tip him generously because I am always touched by the sight of this slight, stooped over old man slinging pizzas up to our door. I don't know what prompted him to share the story of his son, Martin, who just went to sleep one day and didn't wake up, due to an undiagnosed heart problem.
His pride, sadness, confusion, and longing mixed together in his eyes and overcame his Vietnamese accent. Grief is universal. As we finally parted ways, I felt deeply in my humbled heart, "LOOK at what you have, not what you don't. All your children woke up this morning." The fog began to lift.

Ten minutes later, Rae came to tell me Abbie was doing math.

I think the lesson is, we all have a story. When you feel lead to share yours, please do! I didn't mention anything to Hiep about Abbie, and he probably has no clue how deeply he ministered to me in his brokenness. With God, tears are never wasted.