Thursday, May 31, 2007

A New Book

Last day of school for the twins and Kyle!! After Kyle's 8th grade graduation tonight we can officially exhale and begin summer. Abbie is ready for summer too, wanting to be outside more and more. Unfortunately, the best time of year for lots of outdoor time has just passed, and now the heat and humidity are making mid-day walks impossible.

I've been anxiously awaiting the chance to make this announcement: Dr. Tennant now has a book available called "Healing Is Voltage". At over 400 pages it is a comprehensive and understandable look at energetic medicine and how voltage (or lack thereof) impacts our bodies. I was blessed to read a draft of it while we were in Dallas, so I can honestly give it a "thumbs up!" Dr. Tennant is very skilled at taking complex scientific principles and boiling them down so that even very unscientfic minds like mine can grasp them. Pre-publication copies are available from his clinic if you call 1-972-580-1156, and ask for Frankie. The cost per copy is $120, and although it may sound like a hefty price, the length, depth, and inclusion of many color photographs and illustrations make this book a worthwhile investment.

Around our house we have been truly enjoying some peaceful nights. Abbie has been sleeping deeply, without the need of oxgyen, which silences that less-than-quiet oxgyen concentrator. I can hear the wind blowing through the trees at night again! Her muscle tone has come back down to the point where she can easily keep her night splints on all night, with her feet pulled up almost to a neutral position instead of a ballerina toe-point. She is also loose enough to get back into the stander again. This had become difficult to do recently because her adductors (muscles on the inside of the thigh) were so tight that it was hard to keep her legs far enough apart to place in the stander.

Why the changes? Who knows exactly...we've been adding ionized (high pH) water to her diet through the generosity of Diana Lim, and a woman in Canada has recently begun doing some energetic work with Abbie which seems to be making an impact. But, for me to think I can untangle the web of progress and follow each strand to a result is a hilarious thought. I gave up thinking I was in control of this a long time ago, and now I'm to the point of admitting I really don't even understand it -- I am just a happy observer and willing participant.

My Bible study today took me to a verse that this journey has made familiar and beloved. As I sit looking out my window at anthuriums blowing in the breeze, framed by layers of green palms I rejoice in the garden He has made for me:

Isaiah 51:3
Indeed the Lord will comfort Zion;
He will comfort her in her waste places.
And her wilderness He will make like Eden,
And her desert like the garden of the LORD;
Joy and gladness will be found in her,
Thanksgiving and the sound of a melody.

Sunday, May 20, 2007

First off, some housekeeping. I've been letting little steps forward slide by in the midst of end-of-the-year/season activities with the boys. In the last several weeks Abbie has come completely off all digestive support. She used to required digestive enzymes, bile, and betaine with each meal in order in order to keep her milk/egg diet down. Now, she does it all by herself! To me this is a concrete, objective marker that shows her liver function has improved tremendously. Interestingly, she began the enzyme weaning right around when Dr. Tennant told us to expect it (8 weeks after our trip to Dallas). Also interesting is that Jordan, the little boy who was in Dallas when we were, came off his digestive support at the same time as Abbie.

We visted the neurologist a couple weeks back. It was very uneventful, which is always good. Of note to her was the fact that Abbie is now using two switches, which indicates the cognitive ability to understand choices and make clear decisions. I was glad when she agreed that we could cut back a little on Abbie's seizure medicine, Trileptal. As Abbie's digestion has improved it seems that her uptake of the medicine is also more efficient. We had been noticing that it was making her sleepy, which is a new effect for her. So, I am hoping two things: the new lower dose won't interfere with her functioning, and that this decrease is the first of many to come as we look forward to eventually taking her off Trileptal all together!

Now to storytelling time. God has had me in some scary places over the last several days. I think I had to take time to mull them over until He took me to the scariest one of all yesterday...underneath a teenage boy's bed -- yikes! I spent the whole day yesterday deep cleaning the boys' rooms, which gave me time to make peace with God.

This past Saturday we had an outing with the "KAT Club" (kids who use technology to communicate). Kakaako Waterfront park was a beautiful setting to watch the kids play -- digging in a kiddie pool full of Cocoa Puffs to find gummy worms (a highlight for Abbie), blowing bubbles, and even test driving a remote-control power wheel chair that one of the dads created. Abbie and I both liked that one! One of the activities was parachute play -- seating all the kids around a colorful parachute and making it go up and down to bounce a ball around. Who doesn't love that?? I sat Abbie on the ground in front of me so that she could get a good grip on the chute. There was a boy with autism next to us who got so excited that he began twirling around in the middle and landed right on Abbie's legs. The air left my lungs and my face froze as I tried to stifle a yell of surprise and concern. He was not a small boy, and Abbie's bones are fragile. We went on with the day, and I hoped her orthotics has protected her from the full weight of his fall.
Later that evening we took the twins to the UH baseball game, coming home to find an exhausted Abbie sleeping. I thought the day of play had worn her out, but Genevieve told me that she had cried so hard, in such a heart-piercing way, that Genevieve could not even eat her dinner because it was making her heart break. I got sick to my stomach wondering if her legs really had been injured at the park. She was still complaining of discomfort as we got her ready for Sunday School the next day, but there was no way she was going to miss the highlight of her week.

We sat down in the sanctuary a little further back than usual. It was a blessing, so that I didn't later have to feel the eyes of everyone watching me disintegrate. I knew we were in for trouble when the title of the day's message appeared, "Does God Still Heal?" The short answer, is "yes", but my internal screaming at God began as the Pastor recited many instances when Jesus healed because He was moved by compassion. Where in the world is His compassion for Abbie, and how can He withhold it??? Why do we have to worry about broken femurs after a day of play? I know there are all sorts of pious and religious answers to these questions, but they pale in relation to white, hot pain.

I wept during the entire message, and almost broke into sobs as Pastor shared the story of a former president of Columbia Bible College who left that post to care for his wife, ailing with Alzheimers. He spoke of the grief of "missing who she was" and of "not having to care for her, but getting to care for her." It was all so scarily familiar. But, overall, I was just so angry. I told Ray that if I'd had my Bible in my hand I would've thrown it across the room. I've never been in that place with God, and it scared me to my core.

That night I laid awake in bed still angry at God. I felt like a five-year-old child with suitcase packed, headed out the door to leave her miserable, uncaring family behind...until she realizes she doesn't exactly have a Plan B. Defeated she turns around and accepts that no matter how bad it is, "out there" is worse. I realized that no matter how I felt about God at that particular moment, nothing could be as lonely, scary, dangerous, or unsettling as being away from Him. So, much like the little girl, I returned to his grasp full of muttering and complaining, knowing that as a Father he welcomed me anyway. "I'm back...but I still don't like you!!" Now I can almost see Him smile at my upturned nose and pouty mouth.

As I fell asleep an image from Saturday crept in and comforted me. Abbie's outing was at the beach, and as I stood looking at the beauty and enormity of the ocean the thought came to me that while we are standing on the shore it seems that we are somehow able to grasp and contain the vastness of the ocean. We can see the surf as well as the horizon, and with feet planted on the sand the swells at sea seem little more than whitcap decorations of a blue jewel. The experience of the ocean changes dramatically once you place yourself upon it. In its midst you realize your smallness, your vulnerability, your inability to change or control it in any way. It seems to me, the ocean is much like God's love. Not because of the familiar analogy about depth, but rather because as we stand on the edge of God's love it seems so understandable -- "Jesus loves me, this I know, for the Bible tells me so." But we cannot imagine the power, the unfathomableness of His love until we allow ourselves to be swept away into the midst of it.
As I lay on my little boat of a bed, I prayed to become a seaworthy sailor -- one who works with the currents and rides the swells, knowing that although God's love may sometimes feel like a violent gale, His eye is alway on me and His heart is always for me.

Wednesday, May 09, 2007

Three Years

Warning: this may be the longest posting I've ever written.

I've been wanting to write this update since last Thursday night, May 3rd. That day marked three years that we've been on this adventure with God. I awoke that morning sure of what I was going to write about -- praises for God's mercy and faithfulness, overflowing hope and unshakeable faith. But a small voice said, "Wait, that is not all that today is about."

We took Abbie to PT at 11 am last Thursday. I was still in "confident conquerer" mode as we left the house, and even as we walked toward the therapy building. But, then it hit me...the smell. That sanitized smell of a hospital that still doesn't cover the scent of grief, pain and despair within the walls. That stomach-sickening smell took me right back to the bewilderment of the very first days in the PICU. I held it together during therapy, even as the session opened with finding out that the authorizations for both PT and OT have lapsed, with not a lot of hope of getting the OT one renewed before June at the earliest. So, now I was dealing with "the smell" and "the system", two things I've grown to truly despise.

Once we got home I must admit there was a solid hour of weeping. The eyes-swollen, wordless weeping that I felt so sure was a past tense in our house. So, then I figured I would write about how the Lord carries us in our weakest moments and never shames us for our grief or broken hearts, even if we feel like we should be "over it." But again, a small voice said, "Wait, this is not all that today is about."

As the minutes ticked by I sat staring at the clock, replaying that time of day during "The Day." I recalled having left-over pizza for lunch, with Abbie sitting on the bar, singing and swinging her heels. I remembered trying, and failing, to get her down for a nap. The pain began to feel palpable, as if it were all going to happen again. I realized that I was sitting in my living room, making a shrine to my pain. The only way to escape that was to leave the house all together.

So, I ended up shopping for things I really didn't need (thank goodness Ross' is cheap), and killing time until I could pick up the boys at three. They were confused about why my eyes were red and teary, even after I reminded them it was "The Day". Their hopeful hearts never waiver, so tears seem less necessary, I suppose.

It was late in the evening, and I was still wondering what the day was really all about. The clocked edged toward midnight, and I recalled standing at Abbie's bedside three years earlier, praying for midnight to come so that if she died, the date on her grave marker wouldn't be the date I was looking at on the hospital bracelet. I don't know why that mattered so much to me then, but my heart cried out and God answered.

Knowing I wasn't anywhere near sleep, I finally pulled out my Bible study workbook, to begin that week's work. At first I was stunned, and then I laughed aloud at the topic for the week: "Binding Up the Brokenhearted." The first sentence on the page read, "We often hear that 'Christ Jesus came into the world to save sinners' (1 Tim 1:15) Do we as often consider that He came to mend broken hearts?"

That's what the day was all about. The binding of our broken hearts! I want to share some of the insights I gained from Beth Moore and God's Word, especially for those who are on this same journey.

I studied four Scripture passages that each shed a unique light on how God binds up the broken hearted. The first is Genesis 16:1-13. This passage finds Hagar, Sarai's servant, out in the wilderness, pregnant and alone. After Sarai gave her to Abraham to concieve a child, she began treating Hagar very harshly, to the point where Hagar was driven to flee. In the wilderness she met "El Roi", the God Who Sees. "Heeding her affliction"(v.11) God made her great promises about her son and descendants (v.10-11). So, I was comforted that our changeless God is still El Roi, He sees my hurt even when I want to hide it or wish it away. But, He also told Hagar to go back and submit herself to Sarai (v.9). In that I see that even in the midst of great trial or grief, right is right. Sometimes, in the midst of a challenging situation people willingly give us a pass on our actions and words, and we often readily accept. What I have learned these past three years is that overwhelming pain can drive us to say or do things that are hurtful. And, words stick whether we truly mean them or not. So, while El Roi sees how deeply we hurt, He still calls us to do (and say) the right thing. I am just so thankful He doesn't expect us to do that in our own strength!

The second passage is Genesis 39:11-23. Joseph is falsely accused by Potiphar's wife and ends up imprisoned. Verse 21 says, "But the LORD was with Joseph and extended kindness to him, and gave him favor in the sight of the chief jailer." If I were Joseph, the favor I'd want would be a "get out of jail free" card, not being esteemed by the chief jailer! Many times God's provision for us does not include pulling us out of a tough situation, at least not right away. I would have been thrilled to have Abbie wake up and eat a popsicle three years ago. That was not God's plan, but I can say fervently that we have experienced His deep and unwavering favor in ways that would not have been possible had we experienced an overnight miracle.

I then turned to the familiar story of Ruth. After Naomi has lost her sons and husband, it is finally time to return to her homeland. She tells her two Gentile daughters-in-law to return to their own families, where at least they will have a hope of once again having a husband. One does reluctantly turn away, but Ruth proclaims in verse 16 "where you go, I will go." Her commitment to Naomi eventually leads to a new life for both of them. Through Ruth I see how often God provides binding up of a broken heart through people. Our family has experienced this every day for three years. Even when we didn't feel like we needed it, even when we wanted not to need it, especially when we needed it too deeply to have been there, applying bandages to our bleeding hearts.

Finally, I went to Samuel 12:15-25 which tells the story of the death of David and Bathsheba's first son, a child conceived through adultery and born into a marriage made possible by murder. (Who says the Bible is boring??) I could relate to David's vigil as his son ailed. I could feel the groaning in his heart. After his son died, David arose to live again and comfort his wife. Verse 24 talks about the birth of their son Solomon, and then says "Now the LORD loved him." I always thought Solomon was the balm that quickly healed their hearts. Wrong. He was actually the fourth son born to David and Bathsheba (1 Chron. 3:5) This tells me that grief takes time, as does healing. Even good things, like healthy sons, cannot hurry the work of binding up a broken heart. I don't think there is such a thing as "getting over it", but I do think time helps us find a way to live in peace with it, through the mercy of God.

In the original language the word for "bind up" is chavash, meaning "to bind on, wrap around, bind as a wound, to bandage, cover, envelope, enclose." That first night in the PICU I only remember saying two things over and over, one of which was "Christ is here." When I wonder about why that came out of my mouth I now think of Isaiah's prophecy, "He has sent me to bind up the brokenhearted." (61:1) Healing our hearts is one of Christ's primary job descriptions, and where there is hurt, there He is also, enveloping us in love and grace that defies understanding or explanation.

So, it has been a terrible, wonderful, scary, exciting, heartbreaking, life-transforming three years. The hard part about receiving a miracle is being in the position to need one. We have been severely humbled at times by the depth our our needs, weaknesses and inadequacies. But, these painful realizations have illuminated more brilliantly the profound love Christ has for us.

In looking for passages about walking I could pray over Abbie, I recently printed out Psalm 116 because not only does it speak about walking, it seems a good summation of Abbie's journey. So, instead of my flailing attempts to put words to the utterances my heart, I will leave you with God's perfect word:

Psalm 116:1-11

I love the LORD, because He hears
My voice and my supplications.
Because He has inclined His ear to me,
Therefore I shall call upon Him as long as I live.
The cords of death encompassed me
And the terrors of Sheol came upon me;
I found distress and sorrow.
Then I called upon the name of the LORD:
"O LORD, I beseech You, save my life!"
Gracious is the LORD, and righteous;
Yes, our God is compassionate.
The LORD preserves the simple;
I was brought low, and He saved me.
Return to your rest, O my soul
For the LORD has dealt
bountifully with you.
For You have rescued my soul from death,
My eyes from tears,
My feet from stumbling.
I shall walk before the LORD
In the land of the living.
I believed when I said,
"I am greatly afflicted."
I said in my alarm,
"All men are liars."