From Michelle. 4 September, 2010 12 p.m.
Dear friends and family,
The predictable rhythms of our hospital days have now come to an end. As we enter the seemingly mundane activities of everyday life, our already rapid pace has picked up. The removal of that complex web of around-the-clock nurses, nurse techs, food specialists, doctors, OTs, PTs, RTs, and so on has left us feeling rather bare and not a little bit vulnerable. The good news is that in this sink or swim situation we seem to be swimming, though barely!
Perhaps the greatest challenge has been in the caregiver arena. It takes three to four hours to get Steve ready each day. Between eating, bowel program, bathing and stretches, hoyer lifting him in and out of bed and chairs, all the while trying to patiently explain every detail to the new caregiver, it is an intense daily regimen. It is sometimes so frustrating explaining it over and over that Steve and I are tempted to simply have me do it! We know, however, that this is not sustainable for our family, as the children need my attention first thing in the morning. Most frustrating of all is that we are expending all of this energy on temporary caregivers until we can set up our more permanent situation through the state Medicaid hours we have been allotted! I cannot express both the physical and emotional challenge of taking in strangers and allowing them to do the most personal things to Steve, with great risk of hurting him, while I try to supervise. This morning, I warmed up my coffee four times before finally giving up! And this with Steve’s parents helping with the children! Steve has endured the greatest indignities in this process and we have often shared a sharp intake of breath at some narrowly avoided disaster. I long to erase every incident and tend to him as lovingly as he deserves. Please pray with us that our Medicaid “COPES” hours come through quickly and that God brings the perfect caregiver(s) into our home.
On a brighter note, it has been wonderful to have Steve around. The boys are reveling in their Dad, and yesterday, I watched Steve “chase” the boys in his wheelchair in the driveway, with all three running away, giggling, shouting and generally full of life. It felt like a rare bridge to the past, a normal playful moment with Papa, the chair momentarily insignificant amidst the laughter. Thanks to Steve’s parents, Steve and I also enjoyed a rare moment of quiet and solitude yesterday. What sustaining joy amidst the parade of caregivers to enjoy that bit of intimate time together!
Slowly we are learning the routine, from how best to arrange the pillows to prop up Steve’s body, to how to put on the super-tight pressure stockings, to how best to do a one-person transfer, etc. The details are endless, but we continue to be carried through, and miracle of miracles, we are adapting! The amazing offers of help continue and as we begin to understand our needs, we look forward to building up that wonderful network or friends and community that has continued to astound us with care.
As the week has progressed, I confess that there have been moments of overwhelm. I have at times been inundated by the sheer ocean of detail. But I have found that the sense of urgency can and does beautifully evaporate in the presence of the Amazing Love that carries us. What came to mind this morning was the account of Jesus calming the storm. The storm comes. The waves threaten to overwhelm the boat. But Jesus sleeps peacefully. It is my belief, and increasingly my experience, that by His grace, we too can sleep peacefully through this storm.
Thank you so much for your continued love and prayers. Please know how deeply we are comforted by your words, though we do not have time to respond. I have been amazed at the faithfulness of friends and family, the amazingly sustained and sustaining power of all of the love and prayers that continue to flow for us. Yesterday, with minimal equipment, Steve painstakingly transferred himself from the bed to his chair with several of us merely spotting him. With the help of a therapist he is also practicing standing on his own for a few tremulous, proud moments. Given the nature of his injury, this is nothing short of miraculous. We continue to be amazed.
With love and gratitude,