Thursday, June 30, 2011

The Tooth Fairy's Last Visit

This update is a little past-due because Genevieve has been in the Philippines since early last week.  Writing that makes me realize I've not tied up one huge loose end.  In March I asked you to pray for her mother who had a stroke and was on a ventilator with a poor prognosis.

And then...nothing.  Oops!

Well, her beautiful mother, Irene, is walking, talking, eating, smiling and blowing away expectations daily. But, there is also the reality that she cannot be left alone, for her own safety.  So, with seven sisters in the Philippines, the family decided it only made sense to move her home, where they could rotate care duties rather than having Genevieve's family do it on their own.  A tough trip for Genevieve, taking her beloved mommy so far away, not knowing when  (if?) she will see her again.  But, thank you for your powerful prayers!  Irene is a walking testimony to the faithfulness of God!

A couple of weeks ago, we took Abbie to the hospital for oral surgery.  We are so fortunate that we had an oral surgeon and her dentist that worked hard to coordinate their schedules so that Abbie could get a deep cleaning while under anesthesia before she got four teeth taken out.

All went very smoothly, and she ended up five teeth lighter, as her four permanent bicuspids, along with her last baby tooth were removed.  As has become the routine, the most trying part of the day was getting Abbie to wake up.

She just snoozes, and snoozes....doesn't care about the ice pack on her face.  Uncovering her doesn't make a difference.  Begging, pleading, joking...even subjecting her to my singing.  It took 2 hours for her to crack her eyes open.  She was fine...just making the most of a really good nap.

It was a little bittersweet to realize that it would be the last night we would talk about hurrying to sleep so the  Tooth Fairy could come.  It was an especially generous visit this time!

When I got home from New Orleans I had a very honest conversation with Abbie.  I told her that if any of this ever gets too hard, if she is too tired, or if she has completed everything she had come back to do, that she could go.  I told her that we would be OK...yes, we would be terribly sad, but we would be happy for her to be free, dancing, running, playing, and talking, talking talking.  I told her it was always up to her from now on.

It's strange how when you totally release something, that is when it can come back to you.

That conversation was spurred in large part by the increasing decline in Abbie's respiratory system, and her just looking bound up, uncomfortable and unwell.  In the last two weeks I have seen all of that reverse more quickly than I'd imagined possible.

I have begun to meld ABR techniques Leonid taught me with Tennant Biotransducer treatments on the same body areas.  In addition, I (finally) figured out one key thing about Abbie's body.  Whenever her oxygen saturation numbers dip, her body needs water.  If she begins dropping I give her 120ml of water or so, and within minutes she is fine.  Using this indicator, I have been giving her more water than I ever thought she could possibly need.

The abdomen Leonid called "collapsed" is now filled out.  You can feel the pneumatic pressure (the balloon) when you press on it.  You can no longer see her pelvic bone sticking out.

She was getting two nebulizer treatments a day, and quite a bit of supplemental oxygen.  She is not getting any nebulizer treatments anymore, and supplemental oxygen is rare as long as we give her water when her numbers drop.

Her face is changing as her cheeks seem to move back up her face, if you will.  Not hanging down like jowls anymore, but up where they belong.  And, we are starting to see the emergence of a real neck, not just a weak, bulging ring between her collarbone and jaw.

We've mostly been working on her face, neck and lower abdomen, as Leonid prescribed, but we are also see changes in her ribs, upper chest and back.  The volume in her chest is expanding.  Recall how I likened them to weak hinges that folded easily when Leonid examined her.  The left one now fills my hand, nice and rounded.  The right remains a little folded, but is also expanding.  There are times I see her using the upper portion of her chest to breathe.

I just keep telling her, "Look how STRONG you are becoming, Abbie."  I tell her because it's true, but mostly because I am addicted to the smiles it elicits.

Genevieve being gone has given me some very sweet time with Abbie.  I just cannot get enough of her.  Big things like horseback riding, swimming in the pool, and going to parties; little things, like reading the Psalms together all the way through, even when the day's cycle includes 89 and 119  (a marathon Psalms day:), rocking together, just feeling her beautiful skin and sensing her amazing spirit.

These days are a gift.

Tuesday, June 14, 2011

Sacred Journey

Abbie was injured in the afternoon.  The hours between then and evening remain a blur to me.  The first moment of clarity I can recall is when my friend, Kathleen, appeared around the bedside curtain ( I can still see her coral-colored top and khaki shorts).  She just embraced me as we groaned together.  There were no words, and she didn't try to find any.  She just met me in my pain.

In the middle of that first night, she said, "You haven't eaten anything since need to."  I had no hunger, but she insisted.  I numbly walked to the cafeteria with her at one shoulder, and her husband, Duane at the other.  I met their gentle request by selecting a chocolate Fat Boy ice cream sandwich.  We sat in surreal quiet, entreating our Lord to meet us there because this was beyond us.

Duane, my pastor, basically moved his office into the conference room next to the PICU, and didn't leave for a week.  Kathleen was steadfast, especially in the midnight hours when fear, grief and sorrow gather enormous strength.  The McDaniels laid out their hearts to ferry us across unfathomable depths.

I was sitting at Kyle's graduation on May 21, saving seats, when Ray called to tell me that the stroke Duane suffered earlier in the day was "bad, really bad....Tiffany, it's bad...."  I knew that sound in his voice, even as my soul began screaming in an effort to drown it out.

I couldn't get to New Orleans, where they had moved two years ago, until late on May 25th.  Even with fire-tested faith, I was intimidated by what awaited.  I knew  before my dear friend Sandra, her daughter Keiko, and I landed, that we were arriving to say goodbye to Duane, and to help Kathleen and their four children keep breathing through those first days without Daddy.

I cannot put into words the days that followed.  Each hour seemed a year.  Love so purified, so intense as to wash away every disagreement ever had, every cross word ever spoken.  Truly, the "greatest of these" is love.

To sit with Duane was one of the highest privileges of my life.  One evening I was alone with him, weeping with regret.  I could have supported him better as my pastor, as my friend.  What in the world did I do to be holding the hand of such a man as he lay waiting for his Lord?

In the darkness, a gentle Voice said, "No man feels worthy of me, because he is not.  But, I love you, I seek you, I choose you anyway.  I want you with Me."  I began to grin through my tears as I looked at Duane's face and said, "Even here....even here you are being Jesus to me."

Kathleen, amazing Kathleen, walked through these days filled with the special grace God grants to those at the center of the storm.  I felt it after Abbie was injured, as I was suspended above the maelstrom below.  But, this time I was not given this grace, and experienced the crushing pain of watching people you love suffer.  It gave me insight into how Abbie's injury was experienced by all those who love and support us...the fire you withstood to stick with us, to pray for us, to hurt with us.  I am so profoundly grateful.

I also got to witness the fortitude of Duane's mother, Margery...who can best be described as "concrete coated with sugar."  Her graciousness never wavered, nor did her faith.  But, you know...Mamas are not designed to say goodbye to their children.  It doesn't matter if they are 2 or 54.

So, could you please pray for these two special women; Kathleen and Margery, as they try to find their way in a world that no longer has their brightest star in it.

It was also exquisitely painful to witness four very-loved children (15,14,8,7) begin to process what had happened to Daddy, and what him being in Heaven would mean for their lives.  Please pray for Mallory, Matthew, Keanu and Abby as these days and months ahead will be a maze of emotions, grief and the creation of a new normal.

Kathleen allowed me the honor of walking very closely with her through this journey.  We wept together as Duane departed in the middle of the night.  But, as the sun rose, we truly rejoiced deeply for Duane.  In a quiet moment, I grabbed her hand and tried to croak out the following words:

"Thank you for letting me be here for this, for all of see not only the tears, but the joy.  If, and when the time ever comes for Abbie, I won't be as scared."

The shadow of the monster constantly lurking was trimmed in size by a friend's courage and love.  Just as it was at the beginning of our journey with Abbie.

Duane and his eldest daughter, Mallory

Thursday, June 09, 2011

A long awaited joy

So much has been happening here in the last three weeks that it's impossible to fit it all in one post, so I've decided to write about virtually none of it in this one and concentrate on perhaps the most exciting development, from Abbie's perspective.  She is (finally, finally, finally) going horseback riding each week!

She has been waiting for five years for this...first for her trach stoma to close, then to get past the hip surgery, the broken legs, the hand surgeries....she developed Olympian-level patience, that is for sure.  With deepest gratitude to Maunawalea Riding Center, and their wonderful volunteers, Abbie gets to Cowgirl-up every Tuesday morning.

Auntie Patty, her riding partner, getting her helmet all set

This first time I took her, we didn't know how best to set up the saddle and support chair for her.  In order to get to know her better,  Patty decided to just buddy-ride with her.  This turned out to be perfect! So, for now, Patty will continue to ride with Abbie, who melts into Patty with each lap around the arena.

The week I was in New Orleans unexpectedly, Genevieve and her son John (who took all these pictures) took Abbie by themselves.  So,  I hadn't seen them use this neck pillow before.  Abbie didn't seem to mind it at all, at first.

But, eventually, it was time for the pillow to go, because Abbie and Auntie Patty were about to hit the road!

Not only do they let Abbie ride around in a covered, shaded arena  (Thanks, Lions Club!), but they also let her trail ride down the hill a bit.  A group of students volunteered to build a "Sensory Trail" down there, with fun things to do and experience while on a horse.

Abbie getting ready to throw a ball on the Sensory Trail

Abbie and her riding entourage...all volunteers.  Makes me want to just keep hugging them every time I see them!

The view from the riding arena.  This place is therapy for all of us...if only you could feel the gentle breezes and smell the scent of flowers...aaaaaahhhhhhhh.  Love Waimanalo!

Abbie "getting the mail" on the Sensory Trail.  Usually there is a cute little rubber ducky waiting for her.

Love just oozes out of these horses, people and place.  A tremendous blessing for all of us that instantly became the highlight in Abbie's week.

One quick story to illustrate how kind they are.  Like many ranches,  "Da Ranch", where the Riding Center is located, is multifunctional.  They also do a bit of auto maintenance and mechanical work up there, led by the owner Ben (in the blue, standing by Abbie on the horse).

This week, stricken with the stomach flu, I was unable to drive out there, so Genevieve did it again.  As she was leaving, they asked her, "Why is your van making that noise?"

"I don't know," she answered, "there's no warning lights or anything."

They called Ben over who took a listen, popped the hood, took a look and determined that there was no the reservoir.  Had Genevieve driven home like that, the engine could have seized right in the middle of the windy road next to the ocean, and that would also have been the end of my van.  Yikes!

They put three quarts in to get her home, and sent them on their way.  What a tremendous blessing, in every way!

Much more to come as time allows....all is well here, but please pray for my dear friends, the McDaniel Family, after Duane's homegoing on May 30.  A wife now a widow, four young children missing a loving Daddy...prayers are their breath and life right now.