From Michelle. 11 September, 2010 12 p.m.
Dear friends and family,
It has been a long week or so since my last post. While we are engaged in mundane life, nothing has in fact been mundane. All of the things we would have considered simple in the past now require a new routine and problem solving: getting a fork (only the one with the special large tube so Steve can grip it, please), how to go to the bathroom in the middle of the night, how to wash hair, how to put on clothes, how to get out of bed, how to get someone’s help when you can’t get out of bed yourself to get them, when to put the boys to bed and also put Steve to bed on time (a whole routine in itself!). And then the not so normal details: where to keep the many medical paraphernalia where people can best find it, how best to manage the dreaded bowel programs, which and how much medicine to take, where to dispose of the needles after shots, when stretches can best fit in, what is the best physical therapy regimen, how to coordinate the various appointments and the driving, childcare, etc that we need to do to get there, what pool is warm and has a lift for the handicapped to get in, who might make a good caregiver and what to pay them, and so on and so on. While one day all of this will feel normal, right now it is new and requires effort.
There have been both tragic and hilarious moments. Twice now I have left Steve in bed and become so immersed in the clamor of children and the flood of questions and details requiring my attention that Steve has yelled and languished helplessly, unable to get help or attention, a dreadful feeling. On a more humorous note, I cannot seem to get wheelchair driving down. In trying to direct it across the room, I am a train wreck, and Steve laughs at my clumsy efforts. Hopefully no reflection on my car driving skills!
We have had tender moments of caregiving and moments of great frustration as Steve has to endlessly direct and request in order to do the smallest thing from taking a sip of water to turning over in bed. I am developing some strange skills: I can now put on pressure stockings with the speed and alacrity of any nurse, administer a shot without flinching and efficiently maneuver Steve’s body and numerous pillows for the frequent turns throughout the night and early morning.
Steve has a far higher learning curve. He must learn how to pay attention while trying to ignore the strange nerve sensations shooting through his body, or the odd feeling that he is sitting on a slab of ice. He must focus on how to curve his fingers around a fork, lean to the side without falling, lift a leg or a hip with all of his might in order to assist a caregiver. Psychologically he must fight discouragement when he cannot grip his hand to shake someone else’s or go to the bathroom or feel hot and cold in his body; he must learn to ask boldly for what he needs despite feeling like a burden; he must learn how to address the curiosity or discomfort or grief of others as they interact with his disability and his wheelchair. I am amazed at his sheer dedication to getting up every morning, despite the fact that that process alone can take one to four hours, depending on how thoroughly we want to prepare him for the day. But he rises, again and again.
Some of the highlights of our week have been the visit and help of our sister-in-law Laura, the increasingly more common sight of Steve practicing standing at the kitchen sink, Steve’s first therapy sessions with various therapists (everyone always does something new!), the boys blowing kisses from the school bus windows, happy to go to school, watching Zephyr’s delight as he zips around on his new scooter with Papa at his side, and, as always, various communications from all of you!
I have certainly been pushed to my outer limits this week. Zephyr has been sick, and I along with him. Because my body is tired, my patience is diminished and I feel my humanity and inability to do this alone. As Steve faces so many challenges, I feel my inability to make it better for him. While the details are slowly coming, and the long list slowly shortens, the details and unknowns remain many, and the list long enough. On many levels and in many areas, I simply cannot do this in my own strength. I am often reminded of an image I came across in a study I did with my Tuesday small group in Manila this past year. It is an image of faith. In it, a traveler comes to a deep chasm. It is dark. There appears to be a bridge, but due to the darkness, he or she can only see the first step. There is the other side, beckoning, but no sure route to get there. The traveler takes a step, not knowing how the rest of the bridge will look or how long it will take. Not knowing many things in the darkness. But knowing that a light beckons him or her onward. I know there is an “other side” and I know there is a light beckoning me onward, but I don’t know how I will get there, or what the next step looks like. I can only take the one step that I can see. The rest is up to God. And I trust Him.
My verse for today: “For while we are still in this tent we groan, being burdened – not that we would be unclothed, but that we would be further clothed, so that what is mortal may be swallowed up by life. He who has prepared us for this very thing is God, who has given us the Spirit as a guarantee. So we are always of good courage. We know that while we are at home in the body we are away from the Lord for we walk by faith, not by sight. Yes, we are of good courage, and we would rather be away from the body and at home with the Lord. So whether we are away or at home, we make it our aim to please him.” 2Cor5:4-9.
Please continue to pray with me first and foremost that we would please him. Please also pray for Steve’s healing. While his legs gain strength, his shoulder ails him terribly and prevents much work on his arms. His fingers seem to stiffen and have not noticeably improved of late. His sensation remains highly compromised from the nipple line down. At the same time, there is progress, in balance, in leg strength, in skill, and in core strength. We do not know the next step across the chasm. On an entirely different note, seemingly insignificant but also realistically important, our house remains on the market. Please pray that it would sell, or that we would have wisdom in what to do with it.
We are, always and continually, deeply grateful for your prayers.