Six Years Old!

What a dilemma..I have not written because so much has been going on, and now I have to try to catch up on all the great things that have happened over the last couple of weeks! But, I do actually have photos to share (please don't faint with surprise). Please go to http://gallery.mac.com/varafamily#10007 to see a collection recent pictures.


Of course, the biggest event of the last couple of weeks was Abbie's 6th birthday. As for so many other moms in my situation, party planning is a tricky, and even painful proposition. We have a profound reason to celebrate, and yet it is sometimes difficult to keep the focus on what we do have rather than what we, and Abbie, are missing. So, that is my excuse for lagging in the party coordination department. I was hoping to get in the party mood by going with Abbie to a party for two of her friends, Katrina and Christa Cheshire, on 8/19. I knew Abbie would have a good time, but I had no idea how deeply both of us were about to be blessed.

We had been at the Cheshire house for only a few minutes when Katrina, Christa and their mom, Katie, told us through grins and giggles that Abbie's birthday was being celebrated too -- it was partially a surprise party for Abbie. I bit my lip to keep from crying. They had no idea the burden they had lifted from my shoulders!! And, moms don't usually get surprised by much, so this was a sweet surprise for me as well.

Abbie got to open presents, wear a princess hat, and blow out candles with the help of all the girls. Just typing about it now is making me weep. I could have never put such a wonderful day together! What gracious and generous friends we have!!

Since then, it seems that it's been one long celebration..there hasn't been a day that Abbie has not received a present. I'm concerned that she may conclude that six-year-olds are on a gift-a-day program! It's so fun now that she can really appreciate and enjoy her presents -- vanity must kick in around now because she is especially partial to the hair accessories and clothes.

Dr. Tennant arrived in Honolulu on Abbie's birthday, so I spent last Thursday - Sunday at his lectures, while my heroic husband held down the fort. A hero you say? Well, he booked me a hotel room on Friday night, where the conference was being held, so that I could sleep all night and be fresh in the morning while he was on Abbie watch all night. So, yes, "hero" in my book.

I learned SO much, yet again. I am hoping to update the "Abbie's Healing" portion of her website in the next several weeks to reflect what we are now doing and using. But, my hope was yet again fortified, and my resolve strengthened.

We started giving Abbie 1/2 tsp of Baking Soda in her overnight drip about 3 weeks ago because it is a powerful anti-fungal. (Why that matters will be in the "Abbie's Healing" update). It kicked her into a major healing crisis -- a nice way of saying good things blooming out of stinky circumstances. We have been getting much less sleep, as she goes through periods of time when she needs a lot of suctioning and oxygen. Fortunately, these periods are tied to the time of day, and Abbie (being part Swiss) is right on the dot. For example, at 8:45pm she's fine, cruising along on no oxygen, very comfortable. At 9:01 pm she crashes, needing up to 6 liters of oxygen and frequent suctioning, until at 11pm she settles down, comes completely off oxygen, and goes to sleep. The time of these periods coincides with the "high phase" of each of the 12 circuits in the body. Unfortunately for us, one of the circuits that has been quite active lately is the liver, which wakes from 1-3am. But, with each day, Abbie looks brighter, more beautiful (I admit my bias), with softer tone, better vision, and quicker responses. She about threw her neck out of joint nodding "no" the other day when Debbie asked if she was still five.















My birthday on 8/15 also brought a long anticipated present. Abbie's hyperbaric oxgyen chamber arrived two days early. She has been going in the chamber every day by herself. She is very proud of this, because for the 50 previous "dives" I have always gone in with her. We attach an oxygen line to a concentrator that puts out 10 liters/minute, which she receives through a non-rebreathing mask. The chamber is also connected to a compressor, which pressurizes it to 4psi (or 1.3 atmospheres). This is a little less pressure than the commercial chamber we've used here in Honolulu, but the convenience of having one at home makes it possible to have Abbie dive daily.

She often comes out of the chamber babbling, which is exciting. We are also noting changes in her tone and vision. I don't know how much is the chamber, the baking soda, or the recent addition of an iron supplement..I think probably a combination of all three. I am just thankful to have it, especially as we anticipate her surgery. I think diving will help her heal quickly afterwards, and aid in preventing secondary complications like infections.

Ray also gave me a very nice camera for my birthday. OK...well, he paid for it, and my professional-photographer sister helped me pick it (and the numerous accesories) out. Poor Ray:)! But, I am hoping that I will be able to better capture what Abbie looks like and how well she is doing. I think the web gallery is good evidence of the difference between my old camera (the b-day party pics) and the new one (the pics of Abbie alone). With the .mac gallery, I will try to post frequent pictures -- even the ones that are going to be less than beautiful, like Abbie in her cast, so that you can more closely follow her progress and more specifically pray for her as we come up to this challenging time ahead.

So much more has happened, that I must give short shrift to for the sake of my hands and your eyes, but God has been pouring out blessings and grace upon us and we are so thankful! As I type Abbie is at Kahala Mall for storytime with lots of other kids, the highlight of her week. The mall is a couple blocks from our house, so Abbie is officially a mall rat, often strolling over there twice a day. This is one reason her birthday celebration has carried on so long, because even a lady at Zale's gave her a present yesterday!

We are in a good place, relishing her smiles and happy disposition, looking forward to getting the surgery behind us and reaping the benefits of it. God truly is good..all the time!

Becoming Real

Ray and I just returned from a long weekend in Oregon, where we attended my high school's 20 year reunion. I don't know about you, but my memories of high school are definitely a mixed-bag, and it was time I would not willingly repeat. So, I was curious to see if the cliques still thrived and the masks remained in full use.

What I found is that in twenty years' time we had all lost something: love or a marriage, a job, a dream or even a child. These losses broke our hearts, and rubbed us raw -- rubbed us until we became like the Velveteen Rabbit. I don't know if I met transformed hearts, or hearts freed by loss from masquerading, but it was a joy reconnecting now that we have all grown up and become real. I have to say that without exception the women were all more beautiful than the dreaded senior pictures on our nametags. It could be because we were no longer sporting those dreadful 80s hairdos, but really I think it's because we grew into ourselves.

What humbled me was how many of them said that they had been praying for Abbie...people who I hadn't seen since graduation! Of course, there was a short list of people I was truly hoping to see, one of whom was my buddy Mark. During our senior year I recall just a few times where we excused ourselves from Marine Biology, and went through the drive-through at McDonald's to order two waters. As I wandered through the high school party scene, and somewhat lost my way, Mark was there shining the light of Christ into my life with a good joke and Chicago playing on the radio.

As Ray and I talked to Mark and his wife, Tiffany, the brokenness of our hearts bridged the years as they spoke about watching their first son die at 2 months of heart complications. Knowing they were veterans of this same pain, we shared many details of Abbie's injury and recovery. At the end of the evening, Mark said, "I know it's hard to tell the story, but I want to really thank you for sharing it." 20 years melted away, and I could almost taste McDonald's water through a plastic straw.

I opened my email this morning to find a short note from Mark, who said he tried to post in the guestbook, which currently isn't working - so he sent his message via email.

"One of the many things that has changed in me in the twenty years since water at McD's is that my vision and practice of prayer has been confused and disoriented. But, I prayed for Abigail tonight and I am thanking God for a timely reunion with an old friend."

The treasure of true friendship is so often revealed when the storms blow away the sand -- yet another reason to praise God for the rain.

Whenever I return home from a few days away, I prep myself for the "reentry phase" with Abbie. It takes a couple days for me to slow back down to her speed and really reconnect with her. Often, it is a little hard on my heart as I realize, yet again, how different our life is and how far we have to go. This time, for the first time, there was no readjustment, just pure joy. She looks SO good, and is so bright and "with-it" that I just had to giggle.

Yesterday evening our friend who kept the twins during the weekend called to check in. He brought the kids to see Abbie on Saturday, and told Ray, "Man, she looked good." Ray responded with, "Yea, we know.." and he came back with something like, "No, Ray, I mean she looked REALLY GOOD, she was tracking with her eyes and everything.." How exciting to have our impressions validated by other sets of eyes!

Going away requires such a team effort on this end...to have the boys taken care of and taken to school, and to have Abbie cared for around the clock. We owe big thanks to the McDaniels, Infantes, Bosgras and Odas, as well as Debbie and Dayna. And then there is Genevieve...She stayed overnight with Abbie on Saturday night. Then, the nurse scheduled for Sunday called in sick, so Genevieve stayed all day until Debbie relieved her in the evening. The nursing agency offered to try to find another nurse, but Genevieve refused this offer saying she didn't want to leave Abbie with someone who didn't know her well enough. Did I already mention treasures revealed by storms...well, Genevieve is one of our gems!!

We'll try to get the guest book at the main site up again, but in the meantime feel free to post at this page...your comments are a treat to us!

School Meeting

This Thursday we had our IEP (Individualized Education Plan) meeting at our neighborhood elementary school. It was Ray, me and 11 people from the school or school district. The process was...interesting. The PT who assessed Abbie was out of town, so the PT who came up with the goals and gave recommendations has never seen Abbie. She recommended 30 minutes per week of PT, which did not meet our expectations. We were able to get them to raise that to 60 minutes per week "for the initial phase."

That was kind of the flavor of the whole meeting...goals that were not appropriate (i.e. things that Abbie has been able to do for a long time), and just not a clear understanding of her needs. I know Abbie really wants to go to school, and we will continue this process by visiting Jefferson Elementary, which has an orthopedic unit specializing in complex needs kids. However, the therapists at the most recent meeting work at that school, so I don't know what we will see there that will stoke encouragement and confidence in me, but I am praying for something major or else we will have to find another option for Miss Abbie.

On Friday we visited the neurologist. I spoke to her privately first so that I could tell her about the upcoming surgery, as well as the "cortex override" conclusion by the orthopedic surgeon. When she reviewed the seizure activity log, there was a large cluster of them in mid-July. That was the week where Abbie was assessed by a different Dept. of Ed. person each day. She was stressed out, and it showed in her seizure activity. We are going back up to the original dose (5ml) of Trileptal at night, but staying at 4ml in the morning for now, so that we don't make her sleepy. Please pray this works so that we don't have to try other meds. I honestly think the seizures are part of the healing process, as things reconnect. Abbie used her switch very well to communicate during the appointment, which is such an improvement over her usual "evasion by sleeping" approach to the neurologist.

The twins started school this week, and I am thrilled to pieces about the teacher they will have this year...what a difference that will make! Chase started work at Zippy's on Friday. His conclusion after a summer that consisted mostly of lounging: "I've determined that it is much more difficult to stay vertical for 7 hours than it is to stay horizontal."

I've had beautiful days to walk and worship, and all is well here.

The Way Out

In my last posting I wrote that I was in an emotional freeze about Abbie's upcoming surgery. That strategy works well in daylight, but it was impossible to keep the cooling jets on while I slept. The night after we made the decision I woke up with tears on my pillow, having just had vivid, graphic dreams about the surgery. I knew that I should not be defeated by fear, and that we've walked this road with God long enough to have sustaining trust. But, the now-thawed emotions were just overwhelming, and I wasn't sure how to find my way back to a place of peace.

Fortunately, just a few days before, Ray had surprised me with a new iPod after the untimely demise of my last one. So, I went to iTunes to drown my sorrow with praise music. Once I got there I was stumped about what to download. I then recalled one particular song from Jim's celebration service that I really loved, so I pulled out the program, smiled at his picture and found the song and artist.

"Waters Gone By" by Shawn Lewis was a golden thread that led me to so many other restoring songs. I spent an hour downloading them, and then took off for a long walk with my new music.

"You will lift your head without shame

You will firmly stand with no fear inside.

You will surely forget your troubles and pain,

Recalling them only as waters gone by."

Instead of my normal route, I felt compelled to go to the beach where I sat on a rock as far out in the water as I could get. Finally, I could cry aloud. When words came, I just said to God, "I can't stand the thought of making my daughter suffer, even though it's for her good." I could feel Him smile and heard, "I know exactly what you mean."

As the wind began to gust I looked out to a sacred spot near China Walls and was reminded that God always redeems our pain, always. The sunlight reflecting off the tide began at last to penetrate my soul.

My walk home was joyous as I soaked in the greens and blues of the trees, sky and sea. Worship was my way out of fear and dread. So, I am going to just soak myself in music in these next weeks since it can so often reach places that words alone cannot.

Today we scheduled Abbie's surgery for September 18. We have been trying to minimize talking about it around her, but she is so perceptive. Last night a dear friend was talking to Abbie, who was listening but not all that interested. When Kristin mentioned that her son also sees Dr. O, Abbie flipped her head quickly around to look right at her.

This month will be hectic as we do all the pre-op appointments and preparations. In a way I welcome that so we can stay focused more on what we have to do rather than how we feel. Please just pray for Abbie to get stronger and stronger each day so that she can be in the optimal condition going into the surgery.

As I walked home, listening to my new music, one song summed up my strategy for getting through these next few months. Actually, perhaps it should be my life strategy, if I can remember that I am just as dependent in times of ease as I am in times of distress.

"If I Stand"

There's more that rises in the morning than the sun

And more that shines in the night than just the moon

There's more than just this fire here that keeps me warm

In a shelter that is larger than this room.

There's a loyalty that's deeper than mere sentiment

And music higher than the songs that I can sing

Stuff of earth competes for the allegiance

I owe only to the Giver of all good things.

So if I stand

Let me stand on the promise

That You'll pull me through.

And if I can't

Let me fall on the grace

That first brought me to You.

So if I sing

Let me sing for the joy

That has borne in me these songs.

And if I weep

let it be as a man

who is longing for his home.

There's more that dances on the prairies than the wind.

And more that pulses in the ocean than the tide.

And there's a love that's fiercer than the love between friends

And more gentle than a mother's when her baby's at her side.

And there's a loyalty that's deeper than mere sentiment

And a music higher than the songs that I can sing.

Stuff of earth competes for the allegiance

I owe only to the Giver of all good things.

So if I stand

Let me stand on the promise

That You'll pull me through.

And if I can't

Let me fall on the grace

That first brought me to you.

And if I sing

Let me sing

for the joy that has borne in me these songs.

And if I weep

let it be as a man

who is longing for his home.

So if I stand, let stand on the promise that You'll pull me through.

And if I can't, let me fall on the the grace that first brought me to you."

---Jars of Clay