Spring Break 2013. All four sons with us, a luxury we no longer take for granted. Some day the twins will enjoy taking family photos….or will at least get better at faking it!

Although my updates have become (very) intermittent, I always like to write something on May 10th —  the date we agreed to disconnect life support and allow our baby girl to go to Heaven.  This day reminds me every year that Abbie made a choice, and she owns this journey completely.

So, I thought it would be a great time to share with you what the 2013 leg of this expedition has been like so far.  We’ve certainly experienced things with Abbie that we’d never seen before and never expected.

January

Abbie had been exhibiting more seizure activity during the previous few months, which we chalked up to puberty, now in full-swing.  Something tickled my memory, and I recalled how supplemental Vitamin D had helped her in this area in the past.  So, at the first of the year I bumped up her dose.

The seizures stopped almost immediately and almost completely.

This led me to begin slowly, very slowly tapering the amount of seizure medication (Trileptal) Abbie is taking.  She went from 6mls twice a day to 4mls twice a day.  I was envisioning the last dose with glee, but then the path took another turn.

February

Just back from a walk, with a beautiful flower we found along the way.

Finally, after a couple years of false starts, an Advanced Biomechanical Rehabilitation (ABR) trainer, Gavin Broomes, visited Hawaii.  I coordinated workshops for families and professionals, and those went very well.  But, of course, my deepest motivation was what we could do to help Miss Abbie.

Gavin visited our home to train me and Abbie’s nurses in gentle, manual techniques which would build strength, move fluid, and restore structure from the inside out..starting at the deepest layers of the core and then eventually cascading to her extremities.

One thing Gavin noted was that Abbie’s upper chest did not move when she breathed.  Like many quadraplegics, she stomach-breathed exclusively, and had the trademark flaring ribs to prove it.

As he showed us a technique to use on her upper chest, he told us that consistent application would change her respiratory mechanics and get those upper lobes involved in breathing again.

“Yeah!”  I said excitedly.

“Well, yes, ‘Yeah’, but…” countered Gavin, deflating my joy balloon, “you must realize that right now her upper lobes are stagnant, like a swamp.  In order to start working well again, the swamp must be drained, and that can look ugly.  Families usually see one of two things:  lots of white, foamy secretions pouring out, or thick, gunky, yellow secretions being coughed out.  When you see either of these, don’t freak out, and don’t stop treating her chest…keep it up and get her through it.”

“Got it, ” I thought.  ABR is an incremental approach…results come if input is given consistently over time.  I committed to just putting our heads down and doing it for 6 months before we looked up to check progress.

So, off we went on our long ABR adventure.

Except, we forgot about Abbie’s “Warp Speed” switch.  Two days after starting to work on her chest, the girl who never has a runny nose had foamy white secretions literally pouring out day and night.  This lasted for two straight days.  Recalling Gavin’s advice, we just kept working on her chest.

Two days after the secretions stopped, I looked at Abbie’s upper chest and saw it moving as she breathed.  I needed assurance that I wasn’t “hopeful observing”, and asked her therapists to check it the next week.

“Oh my gosh,” they said, “her respiratory mechanics have completely changed”  So, it wasn’t a mirage, and in a week we’d had a big change.  She now breathed almost silently, lacking the rattle in her trachea that has become part of our background soundtrack.  She began sleeping through the night without needing to be suctioned.  Let me say that again.  She is sleeping Through. The. Night.  Completely life-changing for us, and so wonderful for her to have deep, peaceful, healing sleep each night.

Valentines from Abbie’s classmates, which I made into a mobile so she could always see them.

Not just simple cards, each heart contained a poem for Abbie.

March

At the beginning of the month I was just about to give Abbie her 10pm dose of Baclofen, when I noticed how beautifully relaxed her body was and stopped in my tracks.  Abbie has been on the max oral dose of Baclofen (5mg three times a day) since 2007, to help keep her body soft and pliable.

“Why in the world am I about to give this sweet little rag doll medication to relax her?”

So, that’s the night I began trimming her dosage.  Any medication that acts upon the nervous system must be weaned gently and deliberately, but I was excited to begin this process that I never thought we would undertake.  This meant, though, that I needed to stop weaning the seizure med, because we can only safely change one variable at a time.

We continued bit by bit, milliliter by milliliter, to get closer to the Baclofen-free zone.  With each reduction, Abbie seemed to get brighter and brighter.  The medication, meant to sedate muscles, has a global effect and so can’t target only the parts of the body that are challenging, but acts on everything.  We also noticed that Abbie was moving more, as her muscles were now coming out of drug-induced weakness.

Abbie’s horseback riding buddy, Patti, sits right behind Abbie when they are on Pooh.  One Tuesday, Patti commented, “You know, we have some kids who look like they sit more independently than Abbie, and may even be able to hold the reins, but I am telling you, Abbie has the strongest core of any child we work with.”  Woo-hoo…the combination of ABR and decreasing Baclofen was  beginning to really show results.

We went to Washington State on Spring Break at the end of the month.  Abbie did not need one whisper of oxygen on the flight, nor in the dry, wintery elevation of our mountain home.  She was a rock star…continuing to sleep through the night.  It was the best Spring Break ever for me, as I wasn’t dragged down by the exhaustion that always comes with being up in the night many times.

Look at me, I’m wearing a turtleneck! I only get to do this in the mountains.

Midpoint of a fantastic snowmachine ride. We were minus Matt, but plus the twins’ friend, Mitchell (far left) and Chase’s girlfriend, Melissa, far right.

We flew home on a Sunday afternoon, and Abbie slept the whole way which made for such an easy flight.  I worried, though, that I would pay for it  when she wanted an all-night party in return.

But, she slept through that night as well.  I was so relieved, not yet realizing that this was a foreshadowing of the strange, strange month awaiting us.

April

Abbie was still sleepy on April Fool’s Day, but did interact with me in the afternoon about some important things, sacred things.  I will share those in a special post one day. But, as we were rocking and sharing special time, I noticed she was smiling at me.  I was troubled, though, because I didn’t see her dimple.  Then, it hit me.  Her dimple is on the right side.  She was smiling with the left side of her mouth…the side that hasn’t been able to smile since her injury.  She was smiling with her whole mouth…her whole face!!  I began to weep and laugh simultaneously.

Abbie realized she was really onto something and gave smile after smile to continued laughter and cheers.  I will never forget the heart-squeezing sensation,  seeing something I thought would never appear again.  She is STILL on her way back.  She is STILL climbing that mountain.

It was also  on this day that I gave her the last dose of Baclofen.

On Tuesday she was very grumpy.  I finally figured out she had a headache and gave her some medicine to help calm her.  The same  pattern happened on Wednesday. I tried to keep her comfortable, and she slept most of the day and all of each night. Finally, I realized that something important could be the root of the discomfort and headaches.

Baclofen works partially by slowing down electrical activity.  I know from Dr. Tennant’s work that, at its root, healing is basically an electrical event in the body.  Normal operating “voltage” is around -22mV, but to heal something voltage must rise to at least -50mV.  I wondered if removing the Baclofen barrier had unleashed some healing Abbie’s body had been longing to undertake.

I have a device Dr. Tennant invented, the Biomodulator, that, among other functions, allows me to assess Abbie’s voltage at key points.  Sure enough, down by her coccyx I found a point that was way over -50mV.  Something was up.

I began a new series of treatments Dr. Tennant had suggested, and within two days, 11 out of the 12 points I tested were above -50mV.  It was on this day that Abbie went to sleep…for 24 days.

For those weeks she was literally sleeping 23 to 24 hours per day.  When she was awake she was groggy and not herself.  She had no fever, was breathing beautifully, and digesting well.  I knew she was healing, so I just let her be, and asked everyone else to remain calm and give her peace and quiet.

We cancelled all of her tutoring sessions, we skipped horseback riding, we tried to convince a new nurse that we weren’t delusional…Abbie really did interact and learn when she was awake.

She just slept, and slept, and slept, no matter what we did…bathing her, dressing her, pushing her around outside in her wheelchair.  Zzzzzzz.  But, to my eyes, something incredible was silently afoot.

We went to therapy to work on her Theratogs (an orthotic garment for her trunk and hips).  While we were there, her PT noted redness on her right ribs, created by the wheelchair.  The custom-fitted seat is curved in on the right side to support her, but Abbie’s body is getting straighter and rounding out, so the seat doesn’t fit her properly anymore.  We are going to have to get it flared out to fit Abbie’s normalizing body! This never happens with wheelchairs…kids getting better and needing less support…this is a huge step!

We also visited the neurologist, in order for me to confess my free-lance medication management. I prepared for a tongue-lashing, but was met with encouragement.  He assessed Abbie’s (deeply asleep) body and was pleased.  He also gave the thumbs up to restarting the seizure med weaning, 1ml per month, which makes Christmas the target for complete elimination of nervous system medication.

May

Taken today. Wish I had video of her sing-song voice. So glad to have my happy girl awake again.

Abbie emerged from her quilt-covered hibernation brighter than I’ve ever seen her.  The first day her eyes were fully open I could tell her concentration was consumed by getting them to work in synch.

Flipping back  through my mental files I recalled what we did years ago to help her regain sight.  Big red words on white flashcards.  I grabbed a small whiteboard, a red marker and paused to think about which words would be most compelling to her.

Of course.  The names of people who love her!

I started with Dad.  She seemed overjoyed to have something to focus on and look at. I went on to Mom.  Chase. (big smile).  Kyle (flashing eyes and dimple).  RJ (moving her body) and Matt (grin).  And, then I wrote, “Genevieve”…she erupted!  Vocalizing and smiling.  I guess we know who is her favorite!

May 3rd came, the 9th anniversary of her drowning.  Ray called to check on me that morning, and I said, “It’s just another day…really…Abbie and I are having a great morning, and there are no tears on the horizon.  She is just amazing!”  And, for the first time, midnight came and not one tear had streamed down my cheek.

The power of passing time?  Perhaps.  The joy in my heart from being with my amazing girl who is getting better each day?  Absolutely.

So, here we are on May 10th, with a young lady who chose not only to stay here, but to make her own pathway toward health and renewal.  Every day she is changing. Every day brings a sweet new surprise.  Every day we are so profoundly grateful!

I owe thanks to countless people who have supported Abbie and walked with us.  But, here I must recognize two men whose perseverance in their separate areas of research, development, and treatment have resulted, I am convinced, in the pathway Abbie has been waiting for all these years, bound in her body.  Dr. Jerry Tennant and Leonid Blyum…I wish you could see the dimpled-smiles of gratitude and relief, and hear the songs of overflowing joy and laughter our girl sings these days.

“Hey, Mom…this isn’t my good side!”

It’s been an incredibly happy day fully of sunshine and laughter.  Not so different from how May 3rd started out for us nine years ago.  But, this evening, instead of being in the PICU praying for our sweet girl to simply survive another hour, we are home, with her, rejoicing in how beautiful, strong and resilient she is.

This seems like the perfect day to post the video her school made in January.  They focus on one character trait per quarter, so when “Resiliency” came up for the third quarter, they asked if Abbie would be the star of the show.  Of course!

We have been blessed beyond measure these past nine years.  Thank you for your prayers, pleadings, companionship, encouragement, and joining with us in stubborn hope and eternal faith.

To God be the glory, great things He has done!

An entire season has passed since the last update, and so much has happened that words will surely fail me.  So, I turn to pictures, trusting the communication of thousands of words each will make up for lost time.

Most importantly, Abbie is thriving, happy, healthy, engaged, and enjoying her life as we relish the sparkling light she brings to our family.

So, here’s where we’ve been since summer began:

CALIFORNIA:

In early June, Ray had meeting in San Francisco, followed by meetings in Lake Tahoe.  With that kind of itinerary, the twins and I thought it would be a prime opportunity to tag along.

We were able to spend an extraordinary day with Chase and his wonderful girlfriend, Melissa, in San Francisco.  In one day we hit the Sports Basement (outlet store), did the obligatory troop movement and photographs around the bridge, enjoyed amazing seats at a Giants baseball game, experienced family bonding through trampolining at the House of Air,  and then feasted on a perfect Italian meal in North Beach.

Matt and RJ enjoying dug-out level seats at the Giants game.

The view from Matt and RJ’s seats

The House of Air was fun for all – even though Mr. Norris didn’t show up that day

A gorgeous day on Lake Tahoe

We knew the trip had been a success when RJ said, “The summer after I graduate I want to do a trip like this again…remind me I said that, and make me do it, because I’m worried I’ll change my mind.  Just make me.”

It’s been a long time since we needed only a single hotel room during a trip, so we were glad to know the boys enjoyed the togetherness as much as we had.

Melissa survived her initial exposure to the dynamic duo, and won them over quite handily, actually.  On the way to the airport we asked each person to state their “Top 3″ of the trip.

“Meeting Melissa,” answered Matt.  This statement, made in a serious tone, was stunning coming from the King of Sarcasm and One-Liners, but echoed what we all felt.

We arrived home to find Abbie happy, healthy, and ready to hear all the funny stories about her brothers.

SUNCADIA:

We always look forward to July, which brings our family retreat in the mountains of Washington State.

Abbie was the healthiest she’s been in years, which allowed to go on more outings, and enjoy more happenings this summer.

Abbie and Genevieve boating on Lake Cle Elum

Not in Hawaii anymore….Genevieve tries to keep warm, and keep Abbie toasty as well while the boys make S’mores.

This year, we were fortunate to have Genevieve’s son, John, and daughter, Kuuipo, with us for the first week:

First jet-ski rides, first S’mores, first time in Washington…first time seeing Ray wear suspenders.  It was a lot of fun having the Kealoha “kids” with us!

We also celebrated my Dad’s 70th birthday:

Grandpa with 5 of his 6 grandsons, none of whom seem particularly interested in taking a good picture…

What Abbie really, really looked forward to happened on the last weekend of our vacation.  Her bestie, Claire came to visit, with her family, the Wings.

Claire’s face literally radiates joy when she sees Abbie – her friendship is such a precious gift.  During the weekend, for the most part, wherever Abbie was, so was Claire.

The day before we left was very special for our family.  Chase graduated from Army ROTC Leadership Assessment Development Course (LDAC) at Fort Lewis, WA.  This camp, and his performance at it, greatly dictates whether he will be commissioned as an active duty officer next June, and what branch (or job) he will be assigned.

I wondered how we would find him in the midst of over 800 cadets on parade.  The day before graduation he called to say that he had earned the spot of top cadet in his company, and would therefore be in command during the ceremony.  We were thrilled by his success, and realized this would make it a snap to find him.

Here’s the first time we’d seen Chase all summer:

Getting ready for the parade, he turns to our chorus of “Hey, Chase!!!” We were so excited to see him.

Chase in front of his company

Ironically, Chase is the freshest of the bunch, after weeks of training. A 5am departure that morning was enough to do in the rest of the gang

And look who else joined us at graduation…Claire’s dad works right across the street, so she surprised Abbie, who was so excited! You’ll have to trust me on that, as this photo was taken after all the cannon blasts, marching music, a shivering in the cold.

An amazing son and a very proud mom. A day etched on my heart forever.

All in all, a great vacation!

THE BALLET

Abbie’s “patron of the arts”, Dr. Nina Hayahsi, invited us to see the ballet, “Alice in Wonderland.”

Abbie and her “Auntie Nina” before the ballet.

Because Abbie was seated in her power chair, with the perfect positioning and support, she was really able to view all of the fantastically creative ideas and beautiful, talented dancers.

Then, she was invited backstage:

Maki, from Japan, was incredible as Alice…and is not much bigger than Abbie!

After we took the big group picture, these two beautiful cards approached me to ask if I would take a picture of them with Abbie with their camera. Instant tears. They truly are “special hearts.”

Those are the highlights of the summer, and the fall has been equally fabulous:  a new school, new teachers, new friends, a new communication device, and the same spunky girl we love so much.

Life is good.

Each year, as May 3rd approaches, I wonder how I am going to express what the past, that day, and the future feel like as we remember losing Abbie and getting her back again.

I had number of themes running through my head, mentally outlining what was sure to be a brilliant update.

This year, the anniversary of Abbie’s drowning was not going to be gut-wrenching, overwhelming, or even sad.  She is, and we all are, in such a good place that I looked forward to a day of celebrating her choice to come back instead of focusing on her departure.

It started off just that way.  Our care coordinator came for a visit, and I wasn’t concerned at all about the appointment falling on May 3rd.  This is otherwise known as “burying your head in the sand.”

I was fine throughout most of the meeting, but when she started asking checklist questions regarding how I am doing  physically and emotionally, I had to tell her to put an asterisk by all my answers because “today is the day.”

There was a long pause, as our care coordinator, one of the most competent and compassionate people we’ve had in Abbie’s circle, processed what I had just said.  I then shared the story about meeting Captain Mamiya the day before, and we were both in tears.

I, with sand still clinging to my eyebrows, was determined to be OK.  As the afternoon began, however, it just became too reminiscent — the way the sun was shining, the pool sparkling in a way that was either mocking or comforting…I couldn’t decide.  I had to get out of the house.  I had to be away from there during the time of day it happened.

I went to a spot we drive past when we take Abbie horseback riding.  I always long to stop, but never can.  Sandy Beach was the perfect refuge for me.  I got some lunch, and found a good spot on the sand.  I didn’t even notice the signs in front of me when I first sat down.

I thought this was the perfect analogy for these years…especially when I later saw two men surfing right behind it.

We were swept away into a strong current we didn’t see coming.  We have, over time, learned to surf these treacherous waters.  We still have wipe-outs, and there are days I come up spitting water, gasping for air.

Life goes on.

In the first months that fact made my heart scream.  I would walk through the grocery store, feeling skinned alive, stunned at the mundane conversations taking place around me.  How could this be?  My daughter was so hurt, our life was so crazy…how could life in general be the same around us?

Fragile scabs formed over my heart, thick enough to allow for others’ everyday joys and fears..teen girls on Facebook, new drivers, As (and Fs) on report cards…my friends’ lives mattered to me…life goes on.

But not mine yet, not really.

My saving grace has been Ray, whose mission seems to have been “Tiffany’s life will go on.”  He has pushed me, pulled me and walked me into a full life – even when all I really wanted was to hibernate in Abbie’s cocoon.  This process, undertaken by two headstrong people, was not without bumps and rattles — but, eight years on, I can say, for myself…life goes on.

I had planned to actually celebrate, and, on May 3rd,  even bought a chocolate cream pie with lots of whipped cream that Abbie would enjoy, along with some candles to mark her “re-birthday.”

But, Ray had an event that evening, and the twins, having that Friday off from school, had plans as well.  A twinge of disappointment at my unfulfilled plans disappeared as I realized that life stops for crises, for vigils, for funerals and burials.  Celebrations can be rescheduled, because life goes on.

I found it an affirming sign that ours, as a family, has, when I and Abbie were alone that evening.  Having gotten messages from all her brothers, and of course her Daddy, this day did not pass unrecognized.  It’s just, now it is in context.  It’s not the day our life stopped, it’s just the day we exchanged an normal average life for an extraordinary one.

We are grateful most of all, Miss Abigail Faith, that through God’s grace and your perseverance, humor, grit, and resilience your life goes on.  As a famous doctor once wrote, “Oh, the places you’ll go!!”

Love Always Wins!

On Monday Abbie’s therapists totally changed the way she drives her chair.  Her seat has gotten torqued (long story), which forces her to turn to the left a bit.  This positioning makes it almost impossible for her to activate the sensor behind her head, which was her “forward, march!” button.

We are hoping to get the chair fixed in July,  but until then, wanted to make driving easier for her.  So, we let her choose which side of her head she would like to use for driving.  I was assuming she’d choose left, because her head is turning left anyway right now.

Wrong.

She quickly chose the right side — I think it’s so she can prove how strong she is.  She did well with it in therapy on Monday. Today is a bright, sunny (and windy) day in Honolulu, so Alicia and I took her to the basketball courts just down the street from our house.

We had to walk the long way around the park to get to the courts.  As we were just getting past the rec center, I saw Ladder 5 parked at the curb.  Tomorrow will mark eight years since that truck and its crew arrived at our house to help save Abbie.

“Oh, Abbie — Look!  It’s your friends from Ladder 5!”

Just then, the crew began walking past us toward picnic tables.  One of them turned around and said,

“Is that….Is her name….”

I answered with, “Were you….”

We both understood without finishing the sentences.  When Captain Mamiya asked how long it had been, and I answered “eight years tomorrow”, a momentary silence fell.

“I’ve always wondered how things turned out, how she is.  I saw her once at Macy’s and had to ask the woman with her if it was Abbie, because I knew it just had to be, ” he finally said.

“Well,” I responded, “she is so smart, she loves school, she is happy and she is such a huge blessing to our family.  We are so grateful to have her…..so, thank you — thank you for giving us a second chance.”

We chatted for a while longer, and then parted — but not before I could get a photo:

We are profoundly grateful, every day, for the team that brought Abbie back to us.  I am especially thankful that today, of all days, I got to hug one of them, and tell him so.

After that incredible encounter, we made our way to the courts to test out the new driving arrangement.  Follow the link to see  the immediate results:

http://youtu.be/GfE9YDI7qyA[/

She went on and on after that.  And, yes, we were giggling and carrying on just as much the whole time.  She truly is amazing.

As I told Captain Mamiya – sometimes this time of year, these particular days are hard for us.  But, so many good and exciting things are happening for Abbie that this year it is much easier to celebrate her re-birth – rejoicing over the fact that she came back and is bringing laughter to us still.

God is good — and so is life!

My recent trip to Montreal was life-changing for me.  Not only as “Abbie’s Mom”,  as “Neurotrauma Caregiver” or even “Avid Amateur Scientist” (I had expected impact in all these areas), but as Tiffany…a person who existed before Abbie, before her injury, and although very changed by these years, still a separate person who has never truly processed the events of May 2004 for herself, through her own lens.

The second two days of my visit Leonid was scheduled to just lecture the group and have discussions with us.  I was expecting entirely technical and theoretical topics.   I never saw the heart-rending ambush coming.

We took a short break on the first morning of lectures.  Leonid returned and wrote five rectangles joined by addition signs, drew a line under them, and then repeated the five rectangles with addition signs.  He was about to explain what he called “The Happiness Quotient for a Spastic Quadraparegic Child” — to me it is also the framework for redemption, freedom, mental and emotional health, and making every day a good day for families.

Here’s the diagram Leonid created:

Here’s how he explained each pair (one positive, one negative) which could be measured by whatever scale (5, 10, even 100 points ) a family would find useful. The sum of the top numbers are then divided by the sum of the bottom numbers to come up with the “Happiness Quotient”.

Physical Pain/ Pleasure:  children with limited mobility don’t get to run barefoot through the grass, dash through the sand into the waves, or even enjoy a truly deep breath after a quick sprint.  They are, however, often exposed to daily amounts of pain and discomfort that would make most adults whimper incessantly.

The challenge – no, actually, the opportunity for families, is to move this number up by adding physical pleasure simply.   Abbie’s new jacuzzi tub came to mind.  So did walks outside in the breeze, and then staying outside to let the first drops of drizzle find her cheeks.  Suddenly, I wasn’t mentally panicking about how to eliminate all sources of physical pain – I was making peace with that reality, understanding I can change the equation by adding physical pleasure every single chance, every single touch, I get.

Achievement/Frustration:  Leonid defined frustration as the gap between intention and outcome.  Boy, is there ripe ground for that in motor-disabled children.  Abbie’ s mind is so sharp, and her body is equally recalcitrant. It is only her defiant spirit urging one more try, every single day, that keeps her going.

The trap for families of neurotrauma survivors is that this is the very metric we run to, obsess about, live and die by.  Although is our sunrise and sunset,  our world is so stormy that we rarely get a glimpse of either one.

I think there are many appropriate nicknames for this metric:  Soul Crusher, Spirit Killer, Fountainhead of Tears, just to name a few.

Why are we so desperate for measurable improvement in this area, that we drink solely from such a poison well?  Why do we think that watered-down academics and/or mobility are the only way to measure success and create happiness?

Proof.

Especially for families whose loved ones survive profound neurotrauma, we had to begin proving they were “worth it” — proving they had worth — from the very start.

“Please believe me, she is worth keeping on life support”

“She’s fighting so hard – she is worthy of receiving therapy.”

“She has a brilliant mind – she is worthy of an education, no matter if you have to find alternate ways of teaching her.”

SHE HAS WORTH!!

Leonid pointed out that the social language has been pretty well sanitized — “special needs”, “Intellectually disabled”.  Not so in the medical realm, where families start their journeys.  Injured loved ones are freely and frequently labeled “vegetables” or ” in a vegetative state”.  It is left to their shocked, grieving, dazed families to prove they retain the inherent dignity and worth of a person.

So, we run to achievement  to make our case.  In the end, the achievements usually gain lukewarm appreciation at best, as the focus remains on the gap between “normal” and the abilities of our loved ones.  There is never enough time in the day for the amount of teaching, therapies, practice, and work needed to glide of up the scale of achievement to full “personhood” again…so families are utterly defeated, and the rare and unique gifts possessed by our injured loved ones are overlooked by a world searching for “contribution” and achievement.”

That evening, alone in my bed-and-breakfast room — no TV, radio or internet to distract me, the full force, and full weight, of the fight for proving that my sweet girl is who she has always been  struck me with ferocity.

How different this journey would have been if her personhood, her worth, her “Abbie-ness” had been a given, a mutual understanding from the beginning.

Until every family is allowed that starting point, I am hoping the Happiness Quotient will give them a broader, holistic view of their child, and their life.  Keeping “achievement” in perspective will be life and heart-saving for all.

Joy/Fear

This metric is completely tactile,  without words.  While Achievement can be verbally-assisted, this pairing hangs on touch, presence, wordless connection.  An open-hearted hug, a silent clasping of the hand reach deeply into the soul.

This is nothing we don’t already know.  Recall a time when you were vulnerable, ill, perhaps even in the hospital.  Did someone you love touch your forehead or hold your hand?  Do you remember how powerful that was, and how you wished they would never stop?

So simple, and yet we let things like wheelchairs, hospital beds, twisted bodies and achievement-focused schedules and routines get in the way of snuggling, touching, hugging..

My only comment to Leonid during this portion was, “Thank you…you have made hugs as important as therapy…”

Relaxation/Tension

“A child will never thrive and be healthy if he cannot relax, ” said Leonid.  And, that about sums this pairing up.  Introducing tension into one part of the body, through positioning, orthotics or demands for function, introduces tension throughout the body.

Our injured loved ones pay a high metabolic tax for this tension, and it works at odds against our many varied efforts to improve their health.  This metric allows one to consider the “tension tax” as part of the equation when considering which interventions, therapies, orthotics and functional goals to pursue.

It also stimulates the creative minds of parents, in regards to increasing relaxation through physical pleasure, joy and appropriate functional demands.

Connection/Disconnection

The strongest human need is connection.  Neurotrauma robs survivors of many or most channels of connection:  speech, reliable eye contact, the ability to gesture easily or reach out and touch.

Health complications that can follow neurotrauma also impede the ability to be a vibrant part of the family, circle of friends, school and community.  Isolation is indigenous to neurotrauma – creating meaningful, enduring connection requires purposeful, thoughtful efforts.

Of note, connection and achievement being independent variables, desired levels of achievement should not be gatekeepers for connection.  We cannot wait until our loved ones can speak clearly, until they can hold their heads up endlessly (without a drop of drool), or until they can woo the world around them sufficiently to engage with them.

We can be the bridge.  Often it is  difficult to entice the “typical”  (because no one is “normal”, right?) people to cross from their side. But, our loved ones don’t need fan clubs, they just need a few faithful friends to enlarge their world, give them genuine, respectful friendship, and see them with their hearts.

The Weight of Each Variable

Every family can decide the importance of each variable, and may choose to weight them differently.  For us, the overall “Happiness” number is what matters, and anything that can move that number up has value, so we are weighting them equally.

Abbie definitely derives happiness from her academic successes, thus Achievement is not completely the Evil Terror I may have painted.  However, the equation is more for me, as her mom, to holistically frame every decision in the context of “How does this contribute to Abbie’s happiness?”  Not “prognosis”, or “ability” or “rating/evaluation”. Not future, NOW.  Today.

Differing foci, however, is another matter.  For a child in Abbie’s condition, if a family focuses on Physical Pleasure, Joy and Relaxation, then Achievement and Connection may more naturally follow as health, stamina, and comfort increase.

You can bet we will be doing school every day (Abbie insists!), but the focus of my heart, my thoughts, and my time is how to Increase PP, J and R, along with more opportunities for C.  My goal is for her to be happy every day, on the way to some big goals.

I hope that my fellow neurotrauma trekkers find this as life-redefining as I have.  And, if you are not a trekker, but are part of our faithful cheering section — we could really use your help!  Connect. Touch. Engage.  You have the power to bring enormous happiness. Today.

God bless!

So many months have passed that it is difficult to know how, and at what point in time, I should begin this update.

Most importantly, Abbie is doing very, very well.  The addition of a Cough Assist machine to our arsenal of support has been life (and body) changing for her.  This machine provides positive and negative pressure to her lungs — in other words, it forces in a full breath, and then forces a strong exhale as well.  Using this machine 2-3 times per day, 5 breaths per session has actually changed the structure of Abbie’s chest.  Her ribs no longer flare at the bottom, and her chest is rounding out more.

The first couple months of 2012 were spent battling systems.  I refrained from writing because I didn’t want to spew negativity or vitriol in a public, permanent place.  The issues have been resolved favorably, and I am mentally in a place where I can write again with an open mind and heart.

Abbie will be starting sixth grade this summer.  We had her IEP meeting at the end of March, and approached it with caution.  Ray put it best went he questioned the elementary school staff, saying, “I am just trying to understand how 15 hours of tutoring — half of which was testing — can be considered a grade level’s worth of education.”

The response was that no children are retained in elementary school.  Period.  ”So, ” countered Ray, “All that has really happened this year, for Abbie to be promoted to sixth grade, is that time has passed.”

Yep.

We were considering fighting the promotion on the basis that Abbie had not been afforded reasonable access to education, but then the team from the middle school, who attended the IEP, began speaking. It took me about 30 seconds to realize that they were fully committed to actually   educating Abbie, working collaboratively with me, and finding ways to make her educational experience as effective and enjoyable as possible.

So, middle school it is!  Abbie is terribly proud of herself, and enjoying having a tutor come for several hours a week instead of just one.  We will be sad to lose Miss Karen, who has learned how to work with Abbie (not a simple task), and has become an advocate for her.  But, we are looking forward to working with Kaimuki Middle School for the next three years.

Their team came for a home visit a couple of weeks ago, and in just that informal time, brought ideas, resources and encouragement.  Abbie’s nurse Alicia caught my eye while they were visiting, and just raised her eyebrows and mouthed “Wow!!”  I nodded back with a grin…we are ALL excited.

I traveled to Montreal earlier this month, at the invitation of Leonid Blyum, the inventor of ABR.  The ABR clinic directors from Denmark, Singapore and Argentina also traveled to Montreal, so I was able to meet each of them (incredible people all), observe them work with families, and then receive two days of lectures from Leonid, along with training on what to do with Abbie.  So much was packed into those four days that it requires a separate posting to share information, beyond ABR techniques, that will be particularly profound for families of severely physically disabled children.

There were times during that visit when I just couldn’t quite believe I’d been invited, that I was sitting there soaking in new ideas and discussing them directly with Leonid, learning from such kind and competent people.  I call it a “Vortex Moment” — as in, not quite knowing what vortex I walked through to land me in the company of such a small but wonderful group.  I treasured every moment.

I apologize for the lapse in updates, but look forward to sharing meaningful information, exciting news, and new paths in the coming weeks and months.

Sunset on the Leeward Coast of O’ahu

(from www.toddstocker.wordpress.com)

When Ray flew to Orlando on 12/3, I thought I would use the upcoming week to get Christmas “done”, so that we could just enjoy good family time the rest of the month.

I did end up doing a lot of (online) shopping while he was away, because I only slept in the bed two out of the five nights he was away.  Abbie would do OK during the day, but as night approached her oxygen needs would go up, up, up.  There were nights she was on six liters, and I was still working hard to keep her sats up.  Then, the sun would come up and life would calm down for a while.

The consensus was that she was suffering with a virus, and that I just needed to keep doing what I was doing:  multiple nebulizer medications, chest vest treatments, helping her cough, hydrating her, and giving her as much oxygen as she needed.

By Friday, 12/9, I was thoroughly exhausted, but it seemed that Abbie was on the mend.  She was needing less and less oxygen and looking better as well.  Ray was home, and Kyle arrived for Christmas!  The weekend was fairly calm, and we all looked forward to our family being complete with Chase’s arrival on Monday.

Kyle and I left to pick up some medication for Abbie around 11am on Monday.  About an hour earlier, I had noticed she seemed a little warm.  99.7…no big deal.  We picked Chase up at 12:30, and soon after Alicia called to say Abbie was needing 3 liters of oxygen, with a fever of 100.8.  I called the doctor, and left a message since they were at lunch.

My two big sons were starving, so we stopped for lunch.  As the check arrived, I got two calls back-to-back.  Dr. Lau’s office called to instruct me to take Abbie to the ER.  Alicia called to say that Abbie was needing 4 liters, with a temp of 101.2.  “She can’t wait much longer”, were the words I heard as we stood to leave the restaurant in a rush.

As we pulled up I remembered that the van was dead.  I directed Chase and Kyle to jump start it while I got Abbie ready to go.  I ran in the house to find Abbie literally gulping for air.  6 liters, 7, 8.5…nothing would bring her out of the mid-80s.  Our travel oxygen only goes to five liters.  I knew I had to make the dreaded call.

I called out the door “When the van starts, just move it out of the way…I am calling the ambulance!”

I HATE calling 9-1-1, but was so grateful when we heard the first sirens.  We had the oxygen concentrator pegged at 10 liters, and Abbie was still in severe distress.  The firefighters put her on 15 liters and that eventually took her up to 90.  We moved her quickly to the ambulance once EMS arrived, and it was another Moses ride through traffic.  Watching the sea of cars part is a little surreal.

Ray met us at the ER.  Abbie was not doing well.  The word “intubation” was floating around, as she was struggling so immensely.  They gave her a nebulizer of epinephrine, which helped.  After a second one, she was moved up to the PICU.

I was numb from shock.  “Free fall” were the only words that came to mind.  It had all unraveled so terrifyingly fast.  Ray and I were forced to confront the “what if” questions, and think about decisions we would make if Abbie did not respond to treatment.  Out of body.  Or, perhaps, I wish it were…I wish I didn’t have to be in the body whose ears heard the questions, whose lips gave answers, whose head nodded in agreement, who heart shattered with the understanding that one day I may have to let my daughter go.

Finally, my family was all on the same island, and yet, not together.  This was a stomp on the pieces of my heart already scattered on the floor.  It was a very difficult day.

Abbie got progressively better through the week, and was discharged Saturday morning.  While it is wonderful to be home, caring for a newly discharged, medically fragile child remains difficult.  This is now the third week of little sleep, and I am really feeling it.

We finally decorated our tree on Sunday, because we always wait to have everyone there to do it.  The stockings are hung.  And that is all.  I love Christmas, and Christmas decorating, but it is not feasible this year.  Another poke at a tender heart.

The boys have been wonderful.  Helpful, funny, understanding, loving to their sister.  I am so grateful that Abbie hopefully got her sickness out of the way before Christmas.

And, through all this, I am profoundly grateful, that even during a frightening free fall, the rip cord of faith sustains us.  Wonderful friends surround and encourage us.  Family supports us.  God’s word stabilizes even in the most violent of storms.  We are truly, truly blessed.

P.S.  – A funny, little (non) coincidence.  I googled “free fall” looking for an image for this post.  I chose the photo above, and then was curious about the back story.  It was posted on the blog of a pastor, who lost his eldest daughter in a traffic accident in 2009.  This was not the lead element of his blog, but I found my way to Makenzie’s story, and smiled brokenly at the too-familiar reactions he described as he and his wife realized their daughter was gone.  If you have a moment..visit www.toddstocker.wordpress.com

We had just finished up another wonderful ride on Lizzy yesterday (who is not the horse in the photo), when Patty, Abbie’s riding buddy mentioned that the riding center, a non-profit organization, had raised $43 on Good Search.

I was completely unfamiliar with what Patty was talking about, so she explained that every time I did an internet search through www.goodsearch.com, Manawalea Riding Center would get a penny, if I designated them as my cause.  Hmmm…goodness knows I do a lot of searches.

But, it got better when Patty told me about the retail partners who contribute a percentage if you access their sites through GoodSearch.  I looked at the homepage today, and there was J. Crew, Home Depot, and Levi’s among others.  Patty also mentioned that Amazon give 5% of the purchase to your cause.

During this shopping season, will you help me support the incredible people (and horses) at Manawalea Riding Center?  The work they do with such love touches people like Abbie in places and ways that nothing else can.

Just go to www.goodsearch.com and enter “Manawalea Riding Center” as your cause.

A big “Mahalo” and “neighhhhh” for your help!

We’ve been walking this path for so long now, that I have found it easier on my heart to no longer focus on the “BIG” things….talking, walking, eating, etc., and put my energy and attention into how to make each day the best it can be, affirming Abbie for all the little steps she continues to take.

Sometimes, though, big things can sneak right up and lovingly smack you in the face.

A couple of days ago, I was on the way out the door to a meeting when Alicia said, “Oh, by the way, earlier today used the things the vision teacher left with us to test Abbie’s vision”

A couple of weeks ago Abbie blissfully slept through a visit from Auntie Amy, her extraordinary vision specialist from the school system.  Amy wanted to test Abbie’s visual fields, particularly the lower ones, since Abbie will be driving soon.  Most people find it convenient to be able to see potential collisions before they happen, but I didn’t think Abbie’s lower fields of vision were very good at all.  She rarely looks down, so we present all her schoolwork right in front of her.

It always takes great ingenuity to devise ways to test Abbie.  Amy is brilliant in this area!  She brought a wooden wand, onto one end of which she had put velcro.  She then attached velcro to three different colored balls.  She also brought a small black board with the three blocks the same colors as the balls — this would be Abbie’s answer board.

Since Abbie refused to open her peepers for Amy, we were instructed in how to practice with and test Abbie.  Alicia had done just what Amy had advised.  I bit my lip and asked, “Can she anything below the horizon line?”   Part of me really didn’t want to hear the answer, I will admit.  Ignorance is often my most comforting friend.

Then Alicia laughed at my apparently-stupid question.

“Let me tell you what she can see….I was putting the balls down by her feet and she was getting them right.  I even tried to trick her a couple of times by not changing the color when I said I was, and she still got it right.  If she couldn’t find the ball just by looking down with her eyes, she lifted her head and looked down.”

She lifted her head and looked down.

Those words rang in my ears as I dropped my bags and ran to Abbie at the massage table.  I just hugged her and cried.  Those words…may not sound like much to able-bodied people, but this is something we have been working seven years to get. Seven years, and then “oh, by the way” it just happened.

I had just finished writing this update, and went to take  pictures to go with it.  Abbie was working on this very task, so it was perfect timing.  I got to see for myself, and record for you all, where Alicia was placing the balls.  Way, way down by Abbie’s perfectly pedicured piggies.

Abbie chose the color blue from her answer board as soon as we gave her the chance.  So, Auntie Alicia decided to get a little bit tricky:

Here she is, out of Abbie’s view, putting the red ball on the wand.  She then placed it down at her feet, where the blue ball had been previously placed.  To ensure that Abbie isn’t just making lucky guesses about what color of ball is on the wand, we gave her the following choice board after showing her the red ball:

Abbie stayed perfectly still in her chair, even when we prodded her to make a choice and tell us what color of ball was on the wand.  We asked her several times, and she never even twitched. The right answer wasn’t there, but she wasn’t going to make us stop bugging her by making an incorrect selection.  She knows exactly what she is doing!

Every day, it seems, she is showing her renewing strength.  I remain truly in awe of her.