Tuesday, November 24, 2009

A Theme to Match the Times

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

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

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

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

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

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

Have a blessed Thanksgiving!

Tuesday, November 17, 2009

Maddening Disappointment

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, November 09, 2009

Kindness from Every Corner

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

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

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

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

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

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

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

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

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

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

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

Monday, November 02, 2009

All in the Right Timing

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

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

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

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

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

Just some examples:

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

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

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

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

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

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

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