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.