What My Son Taught Me This Week

At some point early in this journey several people sent me the poem about a butterfly emerging from its cocoon.  A compassionate onlooker sees the butterfly struggling to break free, and helps by breaking the cocoon open and releasing the butterfly.  As a result of this kindness, the butterfly perishes.  The struggle itself was an imperative part of the process, forcing fluid to move throughout the structures of the wings, preparing them for flight.  The absence of the struggle left the butterfly unable to survive.

I have taken comfort in this analogy as I’ve watched Abbie battle against one layer of her cocoon after another.  I’ve witnessed her spirit being strengthened to a degree I cannot fathom nor express.  But, yet, in a corner of my Mother-Heart, I still yearn to help her, to ease the fight, to breach the cocoon for her.

My son, Kyle, is an avid photographer.  This week he found a group of bushes at school that harbor dozens of cocoons.  As he was snapping away, capturing collections of caterpillars, close-ups of Monarch wings, and the fragility of suspended cocoons, he witnessed a curious behavior.

As a newly emerged butterfly lay wet and vulnerable on the grass, another butterfly would arrive to lift it to a leaf, where it could dry, gain its strength and eventually flitter away to join the community.  He captured the arrival of the rescue butterfly in the photo below:

I love knowing the “rest of the story”.  It doesn’t end with a solitary emergence from the struggle.  None of us learn to fly alone.

Lovely Locks of Love

Last Monday, while getting my hair cut, I was thinking that it was time to lighten the load on Abbie’s poor head.  So, I asked my hairdresser if she could cut Abbie’s hair so that we could donate it to Locks of Love, an organization that provides wigs to people in need.

When Nell said, “Yea, sure” and we scheduled the cut for the next day, I got a little nervous.  We would have to cut 10 inches off in order to donate it, and I was trying to envision Abbie in a bob.  I spent some extra time that night brushing her hair.  It really was beautiful, so I tried to imagine another little girl somewhere, taking medication to save her life but sacrificing her hair in the process…the hair that we wouldn’t miss, that would grow back in a few months, could make tremendous difference in the life of that little girl.

I spent the couple hours prior to the appointment at a beautiful lunch on the beach with some great friends, which was a wonderful distraction.  I was also a little concerned about how Abbie would do during the cut, how I would hold her, if she would tolerate it, etc, etc.  But, as soon as I got home it was time to go – no time to dwell on it.

Two of my lunchtime friends, Katie and Liberty, surprised me at the salon – which is why I have pictures to share.

Before:

 The Big Snip.  Although we only needed ten inches, we took off a little bit more so make the final length a little better.  I knew her hair was long, but not this long!

The Donation Ponytail:
Getting her hair blow-dried and styled.

Afterwards.  We both survived!  Sorry you can’t see the style very well.  I was hoping the cut would bring out her curls, but the stylist layered and textured it quite a bit.  So, it’s a lot lighter for Abbie, but doesn’t curl as much.

Her hair is still past her shoulders, so it won’t be long before we can donate again.  Abbie was very excited by the prospect of helping another little girl!

She continues to make the most of every chance she gets to practice with the power chair.  We are only going to therapy every other week now, so the opportunities are precious.  Today she learned how to turn the chair both ways (previously we only had the right-handed head switch activated).  It didn’t take her very long to figure it out!

At the end of the session, she had stopped for a moment.  The OT said, “OK, Abbie, I am going to turn the chair off now.”

Immediately came the mechanical equivalent of “I don’t think so” as Abbie commenced spinning again.    I love to see her in charge of something, and able to show a little bit of attitude!

God bless!

Memories of December

A grey fog of illness, sleep deprivation, and stress tinged with sadness consumed December, but now that the calendar has flipped, the haze has receded to reveal some moments worth remembering…and sharing.  This may be a bit long, so I will break it into parts so that you can read it in installments if you wish.

Part I:  Abbie Passes the Test

Several months ago, one of Abbie’s friends, Shari, went to San Diego to have a wheelchair custom-fit for her.  I didn’t think much about it at the time, other than “I hope they have a nice time at the zoo.”  Turns out, Shari’s mainland adventure may well change Abbie’s life.

Kevin, the wheelchair technician that built Shari’s chair, delivered it to her in early December.  While he was here Abbie had the opportunity to try out a power chair similar to Shari’s to see if, as we all believe, she is ready for one of her own.

My confidence heading into the trial faded a bit as the team said they wanted Abbie to control it using a head switch.  Hmmmm….she had never used a head switch in her life.  Not once.  For her to understand that 1) she could control the movement of the chair, and 2) she needed to use her head to do it….yea, not so sure about that.  Head control isn’t really our thing, if you know what I mean.

I’m going to let the video just speak for itself:

[youtube=http://www.youtube.com/watch?v=Rgpb5ituomA?f=user_uploads]

In the span of fifteen minutes we introduced Abbie to the head switch, went through the phase of her just spinning ( and spinning and spinning) because she was so excited about moving, and reached the point where she could spin and stop where she wanted to.  In other words:  she aced the test!

And, all this happened in a loaner chair that didn’t support her optimally!

As you may have noted in the video, the opportunity to move also elicited more vocalization from Abbie.  Everything really does all work together.

As we got home after that amazing appointment, I stepped around Abbie to open the door.  She began sobbing — big fat tears, red splotchy face, wailing — the only times I have seen her like that have involved broken bones and torn ligaments.  I wondered if somehow I had hurt her leg with the bag I was carrying.

Nope.

She just wanted the “chair she could move.”  She continued to cry as I tried to reassure her that we are going to do everything possible to get her a chair of her own to drive.  But, I had to be honest and also tell her that these things take time, and sometimes require a fight.

Those pleading tears, though, ensure that we are going to fight this fight no matter how long it takes!

We are working with Kevin and our entire rehab team, and will hopefully submit a request for a power wheelchair AND a computerized communication device in the near future — both will work with the same set of controls, so Abbie will only have to master one set of movements.

Technology can give Abbie legs and a voice — watch out world!

Part II:  The Nutcracker (Almost) Nightmare

Ever since Auntie Debbie gave Abbie her first Nutcracker DVD five years ago, Abbie has worn out many copies and many versions.  She absolutely loves to watch it, and even listening to the music alone makes her happy.

This fall, my friend Nina told me that she was giving Abbie tickets to the Nutcracker for Christmas.  I could hardly contain my glee and anticipation.  Abbie was thrilled, and commenced re-watching every Nutcracker DVD we have, from Barbie to MacCauley Culkin and the NYC Ballet.  This was going to be magical.

Then, at the beginning of December she got sick.  And, she didn’t get better.

This chest infection kept lingering, and getting worse.  It’s unlike her to be sick for more than three days, and it had been over two weeks as the Nutcracker date neared.  I prayed, prayed, prayed for her oxygen needs to decrease so that she could go.

The weather was not cooperating, as the days seemed to alternate between voggy, steamy grey, and rainy, stormy grey.  We had tickets for the Sunday matinee, but by Friday evening she was still not well. I debated calling Nina to cancel, but didn’t have the heart to stop hoping.

Knowing what was on the line, Abbie mustered the strength to get off the oxygen, get dressed up, and out into the weather that made us look both ways for Noah’s ark before venturing into intersections.  It was an u.g.l.y. day, but Nina had sent me a VIP parking pass that would allow us to unload Abbie right next to the theatre, and eliminated the stress of finding an all-too-rare van-accessible handicapped space.

I followed the directions on the parking ticket, but when I approached the driveway, there was a white car blocking it.  I pulled in right behind it, hoping it would move.  Instead, police lights started flashing in the rear window.

“Where’s the VIP parking?” I yelled out into the rain.

“I don’t know…you have got to keep moving.  Move along – now!” was the none-too-polite answer.

Hrrmph.

I drove around to the entry to the normal parking, and when I handed the parking ticket to the attendant she told me that I needed to go around to the valet.  When I explained that there wasn’t anyone over there, she pulled out her walkie-talkie and assured me she would have them be out there to meet me.

Tick, tick, tock.  It was now 20 minutes to show time.

I went around a very long block again, only to find no valets, and the same white car blocking the road.  This time I got out of the van to inquire, since the directions on the ticket clearly said to enter at this driveway.

The officer simply said, “I don’t have any idea about VIP parking.  I can’t help you, I’m sorry.  But, I have my orders, and you have to move along right now.”

Tick, tick, tock.  10 minutes to show time.

I got in the line to the parking garage…again.  I paid to enter, and then slowly wove my way through, only to find that there were not any handicapped stalls left.  None.

At this point I began to sob for Abbie.  We weren’t going to make it into the ballet.  I had no idea where we could park, and time was slipping away.  I called my friend Nina to let her know, and received a surprising explanation for all the confusion.

“Mrs. Obama is here, ” she said.

Aha!  Now it all made sense.  The “police officer” in the white car was actually Secret Service.  The VIP parking had disappeared to make way for secured parking for the Obama entourage.  Someone telling me that…or something other than “I don’t know – drive around”, would have been kind.

As I drove through the rain in desperation I had thoughts that weren’t rational, but were real and raw.  “That family can see the Nutcracker at any ballet they choose….they could have a command performance at the Bolshoi tomorrow if they wanted.  This is Abbie’s ONE day, her one special day.  Every day is special for them.”  It all seemed so heartbreakingly unfair.

My phone rang again, and Nina said, “Just hang on.  I am going to talk to the Secret Service.”

“Yea…good luck with that,” I thought.  So, I was shocked when she rang right back to say, “They will be waiting for you at the driveway, and will escort you in.”

They did.  I turned over my keys to them, and we ran through the rain to the entrance.  We made it inside, drenched but relieved, to hear the strains of Tchaikovsky’s beautiful music emanating from behind  the closed doors.

Doors we were then told we may not open.  We were too late.  The ballet had begun and we could not be admitted after the curtain had been raised.

I was too emotionally drained at this point to even raise an intelligible protest.  Genevieve, Abbie, Nina and I just stood there, looking at the door.  I was in disbelief, and hoped that somehow having the chance to come to the theatre and hear the music would be enough for this year for Abbie.

Nina was having none of it, swinging back into Superwoman mode, and saying again, “I am going to talk to them.”

A couple minutes later they ushered us in, telling us we couldn’t sit in our ticketed seats near the stage, but could sit in the back.  At first this ticked me off, too, but in the end I think it worked out better because Abbie could see the whole stage.

Once we were settled, the music worked its magic and the desperation of the previous hour melted away into the joy for which we’d hoped.  It was beautiful, brilliant, and very, very special.  Afterwards, Abbie was ushered backstage by Pamela Taylor-Tongg, the gracious director of Ballet Hawaii.

Abbie was able to meet one of the Spanish Dancers, still in costume:

And, after rolling onto the big stage, she met the Snow Queen.  Abbie looked at her with eyes that just said, “I am so in love!!”

With a  friend like Nina, overcoming Secret Service roadblocks and usher door locks alike, Abbie was blessed with a very, very special day!

Part III:  The Holidays


Our holidays normally begin on 12/23, Chase’s birthday.  This year was going to be a special one, because he turned 20.  Unfortunately, Abbie took a real turn for the worse that day, so Chase’s birthday dinner consisted of leftover pizza and chicken wings from the twins’ holiday party the night before, and his birthday “cake” was a banana cream pie one of the twins’ friends brought to the party (thanks, Nishiyama family!), which Chase had eaten one piece out of.  Nice, huh?

Immediately after Chase opened his presents, Kyle and I loaded Abbie up and took her to the ER.  I’d spent a good amount of time packing everything else we would need for a hospital stay, since it certainly looked as if my girl and I would be spending Christmas at Kapiolani.

She had spiked a fever, her oxygen needs were even higher, and her secretions were now discolored. Ugh.  But, the chest Xray came back negative for pneumonia, and her flu swabs were negative as well!  Woo-hoo!  When we go to the ER my rule generally is that if she doesn’t need IV antibiotics or intubation, then we just need to go home because I can do everything else here without exposing her to all the germs wafting around in the hospital.

When I cut the hospital bands off her arm later that night as I tucked her into her bed, I thought “there is my gift!”

Because she was not well, and since Genevieve’s children had gone ahead of her to the Philippines, Genevieve stayed with Abbie as we went to dinners on Christmas Eve and Christmas.  These were difficult and painful decisions, but were best for her and our family.  She had a blast on Christmas morning, and was content to hang out with Genevieve otherwise.

Our family is richly blessed with good friends here, so we have some very warm memories of Christmas Eve dinner on the beach, and singing Christmas carols on Christmas night.

In Hawaii, New Year’s Eve is an all-out bash, with more fireworks than Fourth of July.  I was nervous to take Abbie to the party we always attend, as the air quality gets pretty poor as the the evening wears on.  I almost forgot that for Abbie even more important than clean air is being included.  She was tired of being left home, and was so terrifically content that she breathed better than she had in a month.

We bid aloha to 2010 deafened by strings of Chinese firecrackers, and welcomed 2011 looking up through the smoke to silent stars.  This is going to be a year of good fun, great adventures, and God willing, miracles for many who are waiting.

May God bless you!