A Decade

With the tenth anniversary of the day our lives changed nearing, I looked at the calendar and cringed.  Seeing May 3rd on the page didn’t bother me nearly as much as the swarm of events that week.  There were two in particular that I knew would be challenging.  The first, on May 2nd, was a celebration for the completion of the capital campaign to build a new NICU/PICU building at Kapiolani.

 This has been a five-year effort, where amazing people and a generous community came together to ensure children and families would have the space they need to stay together during the healing, or the letting go, process.  I cannot count the number of dinners and events I went to in support of the campaign, and many of them included well-produced videos which required tissues be placed on every table.  There is absolutely nothing as heart-tugging as hearing a family’s story, in their own words, about their child’s illness, difficult birth or injury, and then the joy of a good outcome.  I loved the stories with every bit of me except for that empty space in my heart and the pit in my stomach.

It is not too strong to say that I dreaded this event.

I walked in to see the theme of the evening lit up the curtains behind the stage:

IMG_1587 - Version 2

The irony did not amuse me, as I recalled that ten years ago on this night I rocked a freshly-bathed Abbie to sleep on my lap as I read to the other kids.  On that night, I didn’t even know how to get to Kapiolani, had never seen a child with a trach, and had no inkling that this would be the last night of “normal” for  the rest of our lives.  I would have lingered just a bit longer in that chair, with that precious girl melted into me, had I known.

Yea, I’ve got a “Journey of a Lifetime” for ya….

Over these ten years I have gotten very adept at putting on a game face, however, and I was able to appreciate the achievement marked by this night, and the hope it holds for the future.  I smiled, made small talk, and posed for pictures, while holding my breath and biting my cheek.  This was an evening that challenged even an old pro like me.

As we were seated for dinner, I began to brace for the beautifully brutal videos, and vowed not to make this night about me in any way.  I would not break down.  I would not.  It turned from a promise to a plea, but I was committed.

Then, the chaplain took the stage, and the whole night changed.  I want to share the blessing he gave, in its entirety, as I felt he, and the Author for whom he’s a scribe, were speaking straight to me in a very profound way.

“Let’s take a moment

  as spiritual beings

  to truly “enter the room”

  before we receive tonight’s blessing.

In order to be fully present

in this time of celebration,

to truly appreciate

the journey we are on together

let’s let go of the things

that are keeping us elsewhere.

So, let go of two minutes ago

and the attention of people and pictures

Then let go of two hours ago

and the fray of our workplace

or the fracas of family life.

Now let go of two days or two weeks ago

and that unexpected high

or that embarrassing low.

Just let it go, but don’t let me lose you to Frozen, that latest and greatest Disney theme song.

Now, the journey of which we speak

can be mapped out with a convincing degree of exactness

but the conditions we face on this journey

 are never certain,

and in this 

we are reminded

that we rely on the blessings of our Creator

to sustain and drive us.

And in being reminded,

          we are thus able

                to tie the blessings we receive

                           with the giving of our blessings to others.

Open your hearts and minds and receive God’s blessing:

When the journey begins and we leave familiar shores,

          may we be blessed with the confidence

                   that we will find our place on new shores.

When the journey affords us times of calm and quiet,

         may we be blessed with the attentiveness to rest

                  and thus have strength for what lies ahead.

When the journey leaves us disoriented,

         may we be blessed with a sense of what’s true

                  so not to lose sight of our core purpose.

When the journey surprises us,

         may we be blessed with an openness

                 that allows for adjustments and growth.

When the journey finds us feeling alone,

         may we be blessed with a group spiritual force

                 that comes from those who share the vision.

When the journey affords us new opportunities

          may we be blessed with the courage

                  to take ourselves even further

                          than we could have ever imagined

And when the journey seems unsustainable

            may we be blessed with the full understanding

                  that the greatest blessing of all — love —                                             sustains every worthwhile endeavor.

Amen.”

— Joshua Almanza, Chaplain, Kapiolani Medical Center for Women and Children

He had just unknowingly recited our decade-long journey, and consecrated it for me once again.  I had been consumed by pain and loss when I walked into the ballroom, but Joshua reminded me of the blessings, of the growth, of the joys, and of the truth that we have never ever walked alone through any of this.  We have been surrounded by love and support from “that day” to this one.  We are so utterly thankful.

I am working on a video to capture these last ten years, but did not want to let too much time pass before I expressed how grateful our family is — for Abbie’s life and amazing progress, especially as of late; for our family bonds that have been strengthened and continue to flourish even as our sons leave home, and for the steadfast, prayerful, kind, and persistently loving friends we treasure.

Here’s a a few photos from this “journey of a lifetime”:

Second week in the PICU.  May 2004

Second week in the PICU. May 2004

After she got her tracheostomy, we were overjoyed to see her face again.  PICU, May 2004

After she got her tracheostomy, we were overjoyed to see her face again. PICU, May 2004

 

RJ and Abbie shortly after Abbie came home from the initial hospitalization.  July 2004

RJ and Abbie shortly after Abbie came home from the initial hospitalization. July 2004

 

Fall 2004

Fall 2004

The day the trach came out!  What a victory that was.  March 3, 2005

The day the trach came out! What a victory that was. March 3, 2005

The girl still loves bathtime!   2005

The girl still loves bathtime! 2005

First real haircut, 2008

First real haircut, 2008

In her power chair, 2011

In her power chair, 2011

Abbie Kyle leaving for college

The day Kyle left for college, 2011

The most beautiful butterfly...inside and out.  2011

The most beautiful butterfly…inside and out. 2011

Besties!  Claire is the most phenomenal friend and pen pal.  2012

Besties! Claire is the most phenomenal friend and pen pal. 2012

Turning 11.  2012

Turning 11. 2012

Surrounded by her princes.  June 2013

Surrounded by her princes. June 2013

My Valentine!  February 2014

My Valentine! February 2014

Now Abbie has braces and Claire doesn't!  July 2014

Now Abbie has braces and Claire doesn’t! July 2014

Checking out Superman, April 2014

Checking out Superman, April 2014

IMG_1628

Enjoying the plants and flowers outside. May 4, 2014. Ten years a SURVIVOR!!!

IMG_1662

Pondering May 6, 2014

 

And one last photograph.  It’s not of Abbie, but it symbolizes the “how” of this journey. There is no way that I could have made it, that our family could have not only made it, but thrived, and there is no way that I could look forward to the next decade of this adventure with anticipation, renewed purpose, and joy, without this man:

Indeed!

Indeed!

 

 

 

Best Doctor’s Appointment…Ever!

During the first year or two of this adventure with Abbie, I longed to hear good results, encouraging news, hopeful prognoses.  Receiving any, or all, of those would constitute a good doctor’s visit.  It didn’t happen often, but as I learned to use the Abbie-scale of assessment, and recalibrate the meaning of progress, evaluations and appointments became less painful, at least.

In the years since our acclimation to this life began in earnest, what I hope for from medical professionals has changed.  Like most parents on such a journey , what I truly desire is information, with the prize jewel being information refined by a thoughtful exploration of the mystery that is my daughter.  I don’t want to hear about “kids like these”, I want to discuss the singular wonder whose hair I brush and cheeks I kiss.  There are no norms, models, nor neat boxes that encompass the life, body and being my daughter has recreated for herself.

Alas, even excellent professionals are often limited by time and infrequent experience with severe brain injury, so  best case ends up being a hybrid — a Most Kids Martini with an Abbie-specific  twist.  I am grateful that they try, and do my best to fill the gaps, through hours on PubMed, an ever-growing library, and networking with other parents.

Sometimes I get too reliant on  my ability to figure out everything she needs, which can lead to not really hearing, not fully listening.  This almost happened at Abbie’s physical on 11/12/13  (had to write the date just because it’s fun).  As we looked at her growth chart, I had visions of amber waves of grain ( and corn..and soybeans)…as her growth curve looked just like the Midwest…flat and then flatter.  She hasn’t really gotten taller in almost three years.

Abbie is fortunate to have an exceptional pediatrician, who has walked every mile with us.  So, Dr. Lau didn’t let me get away with saying “Well, actually, it’s kinda good she’s not getting taller, as it makes caring for her easier.”  She agreed with that, but then said, “While that’s true, I am concerned there may be a global impact if there is a growth hormone deficiency.”

Whack to the forehead!

I had never, ever considered that.  So, PubMed and I had a lovely, and stunning, dinner date that evening.  Long story short, around 2005 researchers began to look at whether brain trauma could result in pituitary challenges for survivors.  Yes.  Around 2010 the studies began to focus on the effects of giving brain injury survivors growth hormone (GH) therapy.  Obviously, not only did I not care about increasing height, I didn’t want to make it happen.  But what I read made me wish we could try growth hormone with Abbie the next day.  Yes, the researchers found that the kids grew some  (around 4 inches over 3 years), but they also found that they experienced improvements in areas including processing speed, visual function, swallowing, respiratory function, memory, and to a lesser extent, motor skills.

One study stated, “In all cases…every participant” given GH saw improvement, and that the more significant the brain injury, the more notable the improvements.  In this particular study, the subjects ranged from 2.5 months to 11 years out from injury.

In all my searching, seeking, tinkering, asking, and begging I’d never seen anything say “in all cases” – especially when referring to a positive change.  I compiled a 38-page Word document of all the relevant studies and emailed them to Dr. Lau around 11pm.

Twelve hours later she called, having already spoken to Dr. Uramoto, the pediatric endocrinologist.  Dr. Lau would order the labs and the wrist x-ray to determine Abbie’s bone age, so that by the time we saw Dr. U., he would have the information he needed to assess whether GH is an issue for Abbie.  I felt so wonderfully respected and supported —  which special needs parents also relish, as they are not always a given.

Our visit with Dr. Uramoto was today.  This update has already been lengthy, so for those not interested in the detailed stuff, the bottom line is that we had a specialist spend an hour-and-a-half with us, talking through the Growth Hormone issue  (she does need it, we’ll start as soon as we can convince insurance to pay for it…a couple months perhaps), and then branching out to really put together the pieces of our Abbie puzzle, really figuring out what is going on with her in some very complex and interconnected ways.  Often, I feel alone in the forest, trying to manage certain things — like why Abbie needs so much fluid and salt, and to calculate others, like how much Vitamin D should I give her to keep seizures away without reaching a toxic level.  So alone.

Today, Dr. Uramoto found our footprints in the snow.

I have great hope for a better quality of life for Abbie — I can’t even describe  the sunshine on the drive home.  Rays hitting my windshield, joined  by emanations of joy from my heart were magical.  But, there is also profound relief for me.  At the end of the day, I am a mom, not a physician, not a researcher, and the strain of trying to become those for my daughter is only fully apparent as I lay that time-worn burden down…freeing me to be Abbie’s Mom, full-time.  My soul exhales at last.

For those wanting to know all the intriguing things I learned today, read on!

Growth Hormone:

Our discussion started with Dr. Uramoto showing me the results of two specific blood tests related to GH:  one was lowish-normal, the other was low.  But it didn’t become apparent that quickly, as the determination of normal and low are dependent upon the stage of puberty a child is in.  Abbie’s bone-age Xray shocked me.  I was expecting to see 10 or 11 years old.  Nope.  13.  Thirteen??  How  can that be.

Seeing those results, coupled with Dr. Uramoto saying that the literature is not that clear yet on beneficial outcomes (beyond growth), and that he certainly couldn’t promise any of that, I had to suppress the fear rising in my chest.  “He’s not going to support GH for Abbie” was the loop playing in my head as I tried to keep a neutral expression.

As we began charting the timing of puberty related markers, Dr. Uramoto explained that a fairly early onset of puberty makes bones look older than they are, while GH deficiency makes them look younger, so the Xray probably just showed the two things canceling each other out.  With better puberty information, it became clear that the blood tests did show a GH deficiency, so we talked through the possible side-effects.  Increased cerebral-spinal fluid could cause headaches.  Blood sugars could rise.  Soft tissue in the throat could grow and possibly contribute to apnea.  All were not highly probable, though, so did not dissuade me.

So, we agreed that we would give Abbie an adult dose of GH (which is half the amount of a child’s dose).  It should not cause her gain much more height (perfect!).  If anything, her hands, feet and jaw will grow — which could help her orthodontic situation  (bonus!)  It will be a daily injection, but with a very fine needle.  The biggest challenge will be insurance.  GH therapy is not inexpensive, so we are certain to be denied at least once.  What’s unknown is how long the “conversation” will last after that.

Salt and Fluid

The visit was winding down, and then the issue of salt and fluid came up.  I explained that during a hospitalization in 2011 we discovered she had very low sodium, and needed fairly large amounts of salt to keep it in normal range.  Managing this is key to seizure reduction.  Around that same time we figured out that if Abbie is not breathing well, she needs more fluid.  If her pulse ox numbers drop, the first thing we do is give her more water.   She gets so much fluid daily that it freaks new nurses out.  600-800ml of Pedialyte daily (to help manage electrolytes), 300ml of water with salt, as well as 100ml or so of water flushes.  And, that’s on a normal day.  If she’s not breathing well, we just keep giving her fluid until things improve.  As far as salt, in addition to the Pedialyte, she also get 3 teaspoons of salt in the food I make for her.

Dr. Uramoto was very intrigued by all this, as it is indicative of other hormonal system problems.  Almost off-handedly, I said, “Oh, during one of the 2011 hospitalizations they did find that aldosterone (a hormone) was low….but, honestly, at that point we were trying to keep her breathing and help her overcome a C-diff infection, so I guess we never looped back to the aldosterone.”

At this point he determined we really needed to compare blood sodium and urine sodium  — they should be the same: normal/normal, or low/low, if there is a mismatch, there’s a problem.  We are looking at SIADH or Cerebral Salt Wasting.  I told Dr. Uramoto it seems more like CSW, as SIADH calls for fluid restriction, while Abbie needs aggressive hydration.  At this point the resident following Dr. Uramoto looked at me like “Who are you?” Dr. Mom…looking forward to retirement.

The aldosterone was also still suspicious, but we weren’t sure if it merited testing at this point.

Then, the resident took a turn at being the hero of the day.  “Hey, what is this?” he asked, pointing at Abbie’s med list.

I had dreaded this.  Pregnenolone.  Basically a hormone precursor, I have been giving it to Abbie since 2007, when testing showed her DHEA was low.  I was not comfortable supplementing that as it too directly affects sex hormones among other things.  Pregnenolone, however, didn’t have noted side effects and minimal or no androgenic, estrogenic or anabolic action.  As with everything I’ve given her over the years, I have tested to see if she still needs it by weaning it.  That did not go well.  Without pregnenolone Abbie had more difficulty breathing, more secretions, was blotchy and uncomfortable.  But, to lay it completely bare, I buy it at Whole Foods – it’s completely a Dr. Mom thing at this point.  A deep of the forest decision.

Now, here I was in the office of an endocrinologist explaining why pregnenolone was on her med list.  Crap.

The conversation never lingered on the “why” or “what are you thinking”, because Dr. Uramoto’s face lit up as he scribbled a flow chart on the back of the lab results.  Two parallel tracks led down from Pregnenolone, one ending at aldosterone, and one at cortisol.  Our conversation up to this point had made us suspicious of the levels of both of these.

“Well, this makes things a lot clearer!  If she is already getting pregnenolone, but her aldosterone was low, and cortisol is suspicious, then it is almost certain she has a problem with these, and the systems within which they act.”  He also told me to keep her on the pregnenolone.  Woo-hoo!  I am in from the cold, now having a professional stamp of approval on pregnenolone.

So, Renin and Aldosterone were added to the lab slip.  Cortisol uses a provocative test, which requires hospitalizations and blood draws over a 24-hour period.  Yuck.  I asked if, as all the other planned testing weaves together a picture, we would be able to deduce a cortisol problem and begin treatment without that challenging test.  Dr. Uramoto explained that if you are on hydrocortisone (cortisol therapy) and don’t need it, there’s not really any harm.  But, if you need it and aren’t on it, there are problems.  So, I think we will probably end up considering treating Abbie as if it is low.

Between growth hormone and low cortisol therapies, Abbie could have a lot more energy soon.  What she does with it will be exciting to see!

I was in awe of the fact that Dr. Uramoto was looking at so many details, and could possibly help find real answer to issues I’ve only been able to manage and not solve.  And, then, just to ensure I never forget this day, he asked, “Has she had fractures?”

What??  Looking at another dimension 90 minutes into the appointment?

I described her femur fractures, and he told the resident to add a Vitamin D test to the lab slip.  I grinned, and explained Dr. Lau had ordered it since I like to track it, and we were drawing blood for this appointment anyway, so we had the most recent levels right there.  I explained that we didn’t use it for bone reasons, but added it after hearing from another near-drowning mom that it helped with her son’s seizures.  We experienced the same thing, which contributed to cutting Abbie’s seizure medicine dosage in half this year.  But, she is still having a few, so I have stopped weaning.

Abbie’s level is  on the low side of normal, so he asked me what Vitamin D I am giving her.  “Ummm…the Carlson Drops.  I order them online.”

He then said some words to me I could not comprehend.  He  repeated them.  I finally had to say, “I do not understand what you are saying to me right now.”   Not doctor.  Just mom.

There are different forms of Vitamin D.  1,25 dihydroxy vitamin D is the most active, but is not what was tested.  He said, “Let’s see if we can get more mileage out of Vitamin D for her seizures if we give her this form, also called calcitrol.  It is a prescription form of Vitamin D.”  So, another box was added to the lab slip.

I’m not sure I said anything intelligible at this point.  I think I just giggled as I tallied the score for the day:

Growth Hormone therapy:  Check

Bonus categories:

Figuring out sodium issue:  check

Figuring out fluid issue:  check

Testing and possibly trying a more effective Vitamin D to control seizures and get off of medication:  check

Lab tests in the next week or so, and a follow-up a week after that.  Lots to look forward to!

Abbie has been giving it all she’s got, every single day.  What she  accomplishes stuns me on some days, and humbles me on all of them.

After Dr. Uramoto left the exam room, I told Abbie, “You have been doing all this amazing and brave work, all by yourself.  Now, it’s our turn to help you, and give you the energy to do even more.”  Grin with dimples…even knowing it involves a daily poke …

I can stop being Dr. Mom.  Abbie can take a break from being an Olympic adventurer.

Time to just be Mother and Daughter is dawning….the joy is inexpressible.

My Co-Author

There was a time early on in this journey, while receiving life support of my own through Abbie’s blog, that I wondered what I would do when I ran out of things to write about.  Eventually I realized that the medical part of the story was minor, and the living life part was the primary, and continuing, essence of Abbie’s saga.  Someone asked me a few years after Abbie’s injury how long I would keep writing.

“Until she can write it herself,” was my answer.

We are not quite there, yet, but Abbie’s already-beloved PODD book has been a giant leap in that direction.

When we returned from our trip to California, I was excitedly telling her teacher about the first thing Abbie told Chase.  As I was showing Ms. L. how Abbie navigated through the book, and talked with her about how the school team could learn to support Abbie’s new language, Abbie vocalized from behind us, as if to say,  “How about you stop talking about my voice, and let me use it.”

Here’s the pressing concern she wanted to communicate:

“I”

“Abbie, do you want to go to the bathroom now?” I asked.

The answer was so obvious, that we were rolling out the door immediately.  Abbie’s nurse took her to the school bathroom and got her freshened up while I talked with her teacher.  Abbie returned looking a million times happier and much more relaxed.  Her teacher, meanwhile, was more than a little surprised.

“How does she know how and why to ask to go the bathroom, since she normally doesn’t use it in the same way we do?”

I explained that this is just one more marker of Abbie’s high receptive language level — that girl listens intently to everything around her, and understands it all.  This request also showed Abbie’s ability to use the language available to her to communicate what she wants, even if it’s not always a perfect fit.  She trusts that we are smart enough to deduce what she means…as I would find out myself later that evening.

Ray had a meeting, I was busy with Abbie, and the dinner hour loomed.  Chase stepped up to the plate and made french toast that, quoting Matt here, his brothers would “jump over a wall for.”  As part of this treat Chase stewed fresh strawberries.  The smell was scrumpious, and Abbie took particular notice, so I promised her we would have some later, after they had cooled.

The evening got a little hectic, and I had just positioned the recliner so Abbie could have a great view of “Say ‘Yes’ to the Dress”.  She had never seen this show before, so I was excited about some high quality girl time.  About halfway through the first episode she had something to say:

Ha!  I knew she would love this show!  I wanted to see more pretty dresses, crazy families, and jaw-dropping price-tags, too.  Only, that’s not what Abbie had in mind.  She wanted to add another word:

More yummy?  OH!!  This was Abbie’s PODD version of “Hey, lady….I want what you promised me earlier.  Get me some strawberry heaven, please..”  She loved ’em!  I was a bit stunned by how she was able to figure out what symbols she could use to get me to understand so quickly.

The better she gets at this, the more of her personality we get to see.  On the Fourth of July we went to a last-minute brunch with some friends.  The dads were chatting, chatting, chatting as all the kids’ faces began melting toward the floor.  Abbie put it this way:

(More to say)

I followed the tabs to her “don’t like” words

I laughed aloud, and told her all the boys agreed with her.  I assured her we would be going soon.  Twenty minutes later, she ratcheted up the pressure:

(More to say)

Wow!  Miss Sassy speaks!  We were on the way shortly thereafter.

Abbie received a special surprise at brunch, however, which made all her patience worth it.

Abbie was thrilled with this gift, perfect for the afternoon of swimming we had planned.  I was not surprised that she had something to say about it, but she would manage to startle me, yet again, with the sophistication of her thought.

(More to say)

“I” “want” “computer”

I was really stumped for a minute.  Abbie was very clear that this is what she meant to say, and that she did not want to add another word…even though mama was begging for a clue.  I had to think about it for a moment, to see if I could figure out her train of thought.

Aha!  “Abbie, do you want to use the computer to send a thank-you note to Auntie Char?”

I earned a dimpled-grin with that detetive work.  So, I used my mini-computer (aka iPhone) to send a text and picture to Char.  Abbie was very happy that her secretary does not get holidays off.  Meanwhile, I was a bit shocked at the level of her reasoning (again).  How and why did she so quickly connect using the computer with saying “thank you?”

Abbie was grinning again when she got to swim with her daddy later that day:

The best way to spend the Fourth of July…enjoying freedom in the water!

And, finally, yesterday Abbie proved definitively that she is indeed a 7th grader, when she said this to me:

(More to say)

(like words)

“I” “smart” “you”

I tried the most generous version first:  “Abbie, are you saying you are smart like me?”

Nope.

“Are you saying that you are as smart as me?’

Yep — that’s what I’m saying, mama.  So, there you go — an official almost-teen, complete with eye-rolling and the belief that she pretty much knows it all.  Love it!!!!

Today brought a trial of the Tobii eye-gaze system, which is basically a tablet computer with a device that can track Abbie’s eyes and select items based on where her gaze rests.  She wasn’t thrilled about doing PODD on the computer, but once we got to play games, she figured out the system very quickly, and in ways beyond what we had explained to her.  Guess that’s just her M.O.  We are hoping to play with the system again in August, when the mainland-based rep returns.

Today also brought to the roads of Honolulu two brand-new drivers…fair warning!  Matt and RJ got their licenses.  Whew —  teaching driving to four teenage sons completed.  Oh man — two more pieces of my heart now rolling down the road without me.

Life is good.  We are blessed!

“Oh, Dad….you are so silly, but I love ya!”

 

 

 

 

 

Tassels, Bars, and Buttons

Abbie and her four princes.

Earlier this month our entire gang traveled to California  for one of the highlights of our family’s life thus far:  Chase’s graduation from college and commissioning as an Army officer.  That Saturday was full of sunshine, flowers, memories, hopes, and the surreal recognition that my son is now truly a man — a man whose adventures are going to take him far from us in the years to come.

When pride, joy, and foreboding meld, the provenance of tears becomes unclear…were my eyes welling with pride at the gold cords around his neck, or were memories of my little boy sliding down my cheeks, wetting them as those precious images fell away as quickly as the years had?

My family, including my parents, surrounding our new graduate. Abbie was relaxing on the grass nearby.

 

A new SCU grad, and the future SCU grad he loves. I know Santa Clara gave Chase a great education, but I suspect the coming years may show that Melissa is the best thing it gave him.

Seeing Chase, degree in hand, was just the prelude, however.  The full symphony of emotions would come  that afternoon, as he was commissioned as a Second Lieutenant in the Army.

We were fortunate that the weather was perfect, so we could hang out on campus in the Mission Gardens between the two events.

Abbie relaxing in the Mission Gardens. I spent many a sunny afternoon here as a student, so I treasured the view of my princess among the flowers.

After a quick change, we were ready to go the the commissioning. I love seeing my boys in jackets…not too many occasions for that in Hawaii.

 

We arrived at the ceremony and were told that special seats were reserved for us, to accomodate Abbie. This kindness is generally a two-edged sword.  It meant we could all sit together, but it also meant we would be in the last row, farthest away from the stage. I didn’t really get to see any of graduation because of where the handicapped section had been located, and didn’t want to feel so separated from the action again.  But, I also didn’t want to leave Abbie.

Genevieve quickly  solved my dilemma.  Her firm command, “Go, go…we’ll be fine up here,” allowed the rest of us to descend the steeply-graded theater to find seats close to the stage.  She didn’t know at the time that her distance from the stage was not going to preclude her involvement in the day.

Red roses have a long history as part of Army ceremonies. I never expected to receive one this day. A precious gift of love and recognition.

Shortly after the commissionees arrived on stage, their commander told them to take the red roses beneath their seats and give them to the women in the audience who had helped each of them make it to this day.  Chase started with three important ladies seated together:  Grandma, Melissa’s mom Ruth, and Melissa.  He then crossed the aisle to give me a rose and big hug.  There was one more rose left.

Chase loped up the stairs, heading towards the handicapped section.  When he arrived, the rose did not go to Abbie, as Genevieve expected.  I heard Genevieve gasp as Chase leaned down, gave her a hug and handed her the last rose.  By the time I caught her eye we were both crying. I will never forget the image of Genevieve waving the rose overhead…such joy at being recognized and included.

Then, it was time…

Whispering one last special prayer, I put the hard-earned gold bars on Chase's uniform.

Whispering one last special prayer, I put the hard-earned gold bars on Chase’s uniform.

Chase received his first salute from an NCO he greatly admires, SFC Timothy.

It just doesn’t get much better than this. So grateful.

This wasn’t Chase’s first Santa Clara graduation, however.  He was five months old when I wore the cap and gown in Mission Gardens:

Santa Clara, class of 1991

Chase was with me from the beginning  of my own Army adventure:

Just before I kissed him goodbye for the last time before deploying to Somalia.

So, there was one photograph I was insistent on capturing:

A circle fuller, sweeter, and more complete than I could have imagined. We did it, Chase…together and individually. My heart overflows.

I awoke Sunday morning thinking, “Phew…now my heart can come down off the mountaintop and rest for a while.”

Abbie had other plans.

In the afternoon Chase, Abbie and I were hanging out in the hotel room, so I thought I would show Chase how Abbie’s PODD book works.  She and I started to talk, while Chase watched.

“Wow, you can tell pretty easily which button she wants,” he said.

Upon hearing that, Abbie vocalized and lifted her hand.

“Oh, Abbie – do you have something to say to Chase?”

She sure did.  I was happy she wanted to talk to her brother.  I was in no way prepared for what she was about to say.  (I’m including all the buttons she had to choose, so you can see how she built her sentence.)

“I”

“Different”

So far, “I, different”…but I didn’t know what else she wanted to say yet. She had to lead me there through additional choices.

(More to say) — a button that navigates to a different part of the book

(Like words) – a button that navigates to a few pages of positive words.

I could barely speak the word “smart” as I realized what she was saying.

“I”, “different”, “smart.”

“Oh sweet Abbie…are you telling Chase that even though you are different you are smart?”

A resounding yes with every exclamatory movement her body could produce.

Weeping all around.

The first thing she had wanted to tell her brother is that she, too, is smart.  We have always known that, even when that faith elicited looks of confusion or pity from others. This wasn’t a revelation of something we didn’t know, nor even an affirmation of something we did.  It was more than that.

It was Abbie telling us that SHE knows she is smart.  She hasn’t lost faith in herself, and has resisted the judgment of so many through these years.  I am still absorbing this one sentence.

So, those are the high (high, high) lights of graduation weekend.  Along with this:

Dinner the night before graduation at Dio Deka in Los Gatos. An absolutely amazing meal with the best company I could ever ask for: my husband, all four sons, Abbie, Genevieve, my mom and dad, Melissa and her parents Vito and Ruth.  We think the world of Melissa, so we knew she had wonderful parents.  We were right!  Getting to meet them was the cherry on top of this weekend.

I cannot number the blessings nor measure the grace that fills our lives.  If I say “Thank you” with every exhale, I don’t think it will ever be enough.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

The Day Everything Changed

Abbie’s new language

Last week I traveled to Seattle to learn a new language called PODD — Pragmatic Organized Dynamic Display.  What American Sign Language is to people with hearing impairments, PODD is to people with complex communication needs, like Abbie.

At first, it looks like just a book of symbols, but 20 years of research, trials, testing and tweaking have produced a tool to provide access to patterns of language, and an approach to teaching it that mirrors natural language development in children.

In fact “teaching” is not quite right…people learn PODD by having it modeled to them, and being immersed in it, just as toddlers learn to speak by being spoken to and listening to the conversations around them.  We don’t sit two year olds down and define the word “what” for them, they just learn how to (over)use it through exposure. Some children jump right into using PODD to express themselves, while others take two, or even four, years of having people consistently model it to them before they begin using it expressively.

But, they do use it.    That point was critical to me.  It didn’t matter how long it took, children eventually began to use the new language.  How long would I give Abbie to learn Chinese, if she were learning it in middle school now?  Three months?  One year?  Until high school?  Those questions seem silly, but that’s exactly what happens to children with complex communication needs.  We “try” devices and language structures for a few months, and then, if it’s “not working”, we move on to another, and then another.  Chinese.  Japanese.  French…without anyone modeling how to do it, without anyone “speaking” those languages to the kids.

I flew to Seattle knowing this would be a years-long investment, and was fine with that.  I saw it not as a task, but as an aspect of our relationship.  Even if “all” I got to do was model it for a few years, I knew it would provoke more interaction and talking to Abbie…and not just by me, but by her  dad and brothers as well.  I had already informed them that we would all now be doing PSL….PODD as a Second Language.

PODD is partner-powered, meaning that a helper holds the book, turns the pages, and verbalizes the PODD user’s choice of symbols.  To boil three days worth of training down to once sentence:  I am convinced that PODD will allow Abbie to eventually say whatever she wants to say, to whoever she wants to say it, whenever she wants to say it.

PODD communication books can be constructed in many formats, from 9 choices per page up to 100.  Part of my task upon returning home was to determine what type of book would be best for Abbie’s introduction to PODD — 9 or 12 choices per  8 1/2″ x 11″ page.  I know her receptive language (what she understands) is probably ready for more language than those formats offer,  but her vision is a limiting factor.

To produce a book for Abbie requires PODD software (which I bought) plus Boardmaker ( the symbols software) which I don’t have.  So, we don’t have a full book yet.  However, today we had a terrific nurse working who I haven’t seen in a while, so as I was describing PODD to her, I pulled out the one sample page I got at the course which uses the high contrast symbols, developed for people with Cortical Vision Impairment, like Abbie.

The page isn’t even one of the front pages, which will be used the most.  I  have “food and drink”, an activity specific page,  which also includes general symbols that I used to model PODD for Abbie this morning for the first time.

Abbie’s eyes instantly flew into action as I showed her the page.  It was beautiful to watch.  I followed the first rule of PODD, which is to start by raising the right hand and saying “I have something to say”.  I want to show Abbie she can initiate communication, not just wait to be asked questions.

I then started telling her I needed to “hurry up” and go do “more” chores so I could “stop” and do something “different”, pointing to each of those key words as I spoke.

I played around with modeling a bit longer, and then was swept up in what turned out to be a crazy day.

Late in the afternoon I was on my way upstairs and noticed Abbie sitting in the recliner having her g-tube feeding.  She was eating “food”!  Perfect time to do more modeling.  So, I told her that the “yummy” “food” would “fill” her tummy,  If she was still hungry at the end, she could have “more”, but if she got “full” before the end, we could “stop”.

I spoke several more sentences and was having quite a bit of fun watching her visually engage, and then realized that PODD will be a powerful motivator for using her vision – and her vision will improve with use.  A tremendous bonus!

Then, something unexpected happened.

Abbie vocalized and moved her right arm.

“Oh, Abbie, do you have something to say?”

She vocalized again to say “yes”.

She’d had a grand total of ten minutes of PODD modeling at this point, but I was thrilled she was willing to try.  Since she cannot point directly to the picture she wants, I scan the page for her to understand her choices.

For example I say, “This column: Sentence Starters (What, I, you, not, want, swallow, choke), food/taste/eat, drink”.  If she indicates “yes”, then I scan through the choices in that column one by one until she indicates her choice.

Abbie’s choice was not in the first column, nor the second.  She wanted the third column, and chose the second box:  “different”

OK..no clue yet, so I asked, “Another word?” to see if she wanted to add to that.  Yes, she did.

This time her choice was in the first column.  It was the second box:  “food/taste”

“OK, Abbie, ‘different taste’.  Another word?”  Yes…she wanted to add another word.

Again the first column, and this time, the first box, “sentence starters”.  I named each of the choices in that box for her, and she chose “want”

“Different. Taste. Want”  (PODD-speak)

“I want a different taste” (conversational English).

I said both of those sentences to her, and she strongly indicated yes, with every part of her body.  She wanted something different to taste.  I ran to the fridge and grabbed some cinnamon applesauce, and returned, grabbed the sheet again, and used it to say, “”I “”hurried” to find a “different” “yummy” “taste” for you Abbie, and that I hope you don’t think it’s “yucky”.  It is “cold”, but I think you will think it’s “yummy” and want “more”

I gave her two very small tastes, which she enjoyed.  Then, she coughed a bit, so I stopped giving her applesauce.

She soon vocalized, so I asked, “Do you have something to say, Abbie?”  She sure did.

“Not” “Want” “Stop”

“Oh, you don’t want to stop eating applesauce?”  Bingo.  So, I gave her more tastes.

I then had to run out the door to a dinner for which we were about to be late.  I was dizzy walking down the front steps as I began to truly process what had just happened.

For the first time in over nine years Abbie had expressed to me what was on her mind.

When I first walked into the room, the thought that she might like a different taste was no where in my mental universe.  When I stopped giving her tastes after she coughed, which seemed the prudent thing to do, she told me firmly that she did not want to stop.  Autonomous expression…the goal I had been prepared to work years to have Abbie achieve…. had just happened, with a simple sample page.

Abbie has her own voice again.

Reading those words, my heart fills my chest so completely that I can hardly breathe.  Abbie can direct her own journey now, can tell us not only what she needs, but what she thinks, dreams, enjoys, wonders, and dislikes.

Today, everything changed.

The IEP goals we wrote in April for PODD are 1) for Abbie to notice that we are using the book and become interested in the modeling, and 2) put together 2-word utterances.  We haven’t even built the book and she’s laughing at those goals, eating dust in her rear view mirror.

My heart is

 

 

 

 

 

of joy tonight.

 

And I know tomorrow will bring


of it,

 

 

 

 

 

 

because my girl has never, and will never,

We are blessed.

 

 

 

 

Abbie’s 2013 Timeline

 

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!”

 

 

 

 

 

Nine

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!

[vimeo]http://vimeo.com/65450162[/vimeo]

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!

 

Where We’ve Been

 

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.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Life Goes On…

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!

 

 

 

Not Just a Walk in the Park

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!