From Michelle. 26 August, 2010. 11 p.m.
Dear friends and family,
Every night I long to write and record the many events, mostly out of my longing to touch base with the awesome wellspring of prayers, good wishes, and wonderful support from all of you! Increasingly, however, sheer fatigue has won out over desire. We are now coming into a new phase of the marathon. The adrenalin of the initial sprint has worn off, but the greater part of the race looms ahead, and we long to fall into that more steady pace and rhythm that carries runners through to the finish. One more major hurdle yet to go, however: transition home.
We now have what feels to be a firmer date: August 28th. After 71 long hospital days, Steve will finally reenter the real world in his new body. While this is, on the one hand, joyful news, it is on the other a daunting hurdle. Last Saturday we got our first taste as I drove Steve home for a “test run” overnight stay. Granted, we had no help lined up but our own cheerful and determined spirits! For 36 hours I ran myself ragged between Steve and the kids, and Steve agonized over every request made, knowing I was already over-extended. He lay helpless in one room while I dealt with a child in another, waiting for a moment to catch my attention. Small practicalities began to dawn on the both of us. Not only can I not leave the children, and most particularly Zephyr, safely at home with Steve, but I cannot leave Steve safely with the children! Our hearts jumped out of our chests several times, including when Zephyr climbed into Steve’s chair when Steve was already in bed and somehow managed to turn it on and nearly pin Steve to the mattress! Another heart stopping moment occurred on the following morning when the wheelchair did not work for almost ten minutes and no one from the hospital could help us. We were helpless! Fortunately, the machine eventually resuscitated itself!
Nighttime proved the most challenging of all. We both dreaded the alarm, set for every three hours, when I would have to get up to turn Steve, rearrange the numerous pillows propping up his body at comfortable angles and switch the boots that are used to keep his feet from “dropping”. I would just begin to drift off again after one of these (for me) athletic episodes when Steve would reluctantly have to awaken me again to move a leg or help him in some other way. Steve felt terrible and I felt terrible that he felt terrible. These are the rhythms we will find over time, no doubt! For now, however, it was an uncomfortable and sleepless process.
As the doctor said, it’s going to be hard no matter when we do it. As we wait for state support and funding to be arranged, we are cobbling together an interim plan, feeling around in the dark for what our basic necessities might be, what kind of support the children will also be comfortable with, and how in the world I will find time to sleep during the day to recover from those demanding nights! God has been so good, and we continue to pray for his faithfulness in all of these details.
Nevertheless, our energy and enthusiasm is flagging. Our spirits are truly willing, yet our bodies are giving way! Please pray especially for Steve during this time, that his amazing spirit and determination would remain strong, that we would find good therapists outside the hospital who will encourage him to excel both physically and mentally, and that our caregivers would easily blend into our home. The adjustment to sharing our life as a family with all of these new folk will be a challenge in and of itself, but with the right individuals, it will work. Our flagging spirits are in no small part attributable to the fact that we have spent so little time together recently. We miss each other terribly. This, at least, will end soon.
On a brighter note, many of our most recent prayer requests have been beautifully answered! I am truly delighted to announce that the boys have a school, and not just any school but a lovely private Christian school not far from our home that we anticipate will be the perfect community to walk alongside us through this year. The circumstances leading up to this have been such that I feel this is a “God thing”. We are beyond grateful! The boys are excited to meet their new teachers on Monday! This took a deep burden from me, and I feel that in every way humanly possible, my big boys are well provided for. Please pray as I also consider what, if anything, to do with Zephyr! My greatest awareness is that I will need to SLEEP some day, and that daytime may be better than nights in the beginning, not an easy task with a two year old in tow! We shall see!
Also, our state hours of assistance look like they will be coming through. While we are still walking through this system, we are grateful that the hours assigned will greatly help to meet our needs and are on the upper end of the spectrum. We are aware that we will need every minute ascribed!
As we end this stage and begin another, I look back on the leg of the race already run. In the beginning, we wondered whether Steve would breathe on his own, talk on his own, require a tracheotomy, have full mental recovery, and survive his surgeries. We then wondered if the excruciating pain would ever recede, if he would every wiggle a finger or a toe, or lift a fork. In 69 days, he is doing all of this and more. We know that the trajectory cannot continue forever, but we hope and pray that it will carry us far further into mobility and independence and yes, even a walking, leaping, preaching Steve! Your prayers are so very deeply appreciated as they have carried and continue to carry us through this journey!
It has been awhile since I ended with a verse. Some verses bear repeating, and this is one of them: “Fear not, for I have redeemed you; I have called you by name, you are mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through the fire you shall not be burned, and the flame shall not consume you. For I am the Lord your God, the Holy One of Israel, your Savior.” Isaiah 43:1-3. We are riding on His back through the flood.