Thursday, December 10, 2009

So, we move along. Life has new meaning. Nothing that was once important has the same glow. Things that didn't seem to have much thought are the most important things in the universe. I shame myself for all the petty and cruel ways that I looked at life. Let's talk about blessings. In June, just when we were getting used to the rehab life, we were told that "in a few days Jed would go home." Jed was happy. I was scared to death. I watched countless people make his life comfortable: The young gal who swept the floor daily, the nurse who changed his sheets, (clean ones were always there, the nurses and doctors that monitored his every breath and charted all bodily functions adjusting medications accordingly, the therapists that helped him dress and led him through getting him into a chair, into the bathroom, into some stage of cleanliness, the ones who prepared and brought his food and came after to remove it and fill the bedside table with fresh water. I panicked. All these things I would have to do. In rehab I could sit and read the paper with Jed. We could do a crossword puzzle or even take a nap together. At home, I would be all those people.The floor wouldn't be swept, the medication wouldn't be administered, the food wouldn't be served, Jed wouldn't be dressed or put in his chair, bodily functions wouldn't be monitored, sheets wouldn't be changed or washed unless I did it. My chest got tight and I drove home stopping at the shop. I walked into the shop feeling hopeless, at the door I met Ubaldo. Like a sunbeam direct from heaven, he stood there with his mother looking happy and God sent. "Ubaldo, are you still doing home health care?" "Yes, I'm looking for a job." "You're hired." I started to remember that God was in charge and would provide what we needed. Within a few minutes another customer agreed to build a ramp by Sat. and in a few short days I was the new owner of a wheelchair transport van that "dropped right out of heaven" for us too. I was almost floating. I could literally feel the hand of God taking care of our needs. But then, our little church moved in...literally. Judy put out the call for visitation and food, set up a sign up sheet, and the people came, the food came, the calm came, hope moved in, made a place in our home, and we couldn't breathe without breathing in a new sense of awe. We were humbled and honored by all that came our way. Panic no longer lived with me. Jed was home where we both wanted him and we were lifted up, our burden was shared. This is how we went through the Summer and Fall. Lifted, humble, grateful, blessed and hopeful. Therapists came to the house, nurses came to us and the church kept bringing their hearts and their casseroles. Ubaldo did everything else. While visiting Dr. Strum we got, "That's the body of Christ doing what it's supposed to do." We knew he was right, but felt undeserving.

Sunday, December 6, 2009

"Janice Allen Invited

Angela Holm Invited

Candice Wiggum Invited Invited

Dennis Hiser Invited

jenn holm Invited

Max Maximum Invited


Sarah Galvan Invited

Not to skip over months and months as though they were not important, but we are home. Jed was released from rehab in June and we have been trying to make a life every since. Blessings have rolled is so much as to almost overwhelm us. People, people, people. People who give of themselves for our good. Over and over and over. We got a ramp built, a wheelchair transport car, a caregiver,visitations and food, all because people were there with hearts and arms open to us. Each of those have a story that I may one day tell in detail. We've been prayed over, prayed for and we've prayed until tears come and wash our hearts clean. We've been home 5 months. Jed is better than when I brought him home, but his progress is so slow that we get tired. We get tired of visitations. We get tired of food and cheery good will. We get tired of prayer and tears and hope. We just get tired. And when we get tired we turn on each other. We're really screaming, "I need more hope, more prayer, more visitations, more regularness," but instead we push it and each other away. But, we did not fall from Grace, so by the Grace of God, we pick our spirits up and move to the next day. He is close to walking, but yet he is so far away from a normal independent walk. He knows that, and all the "wow, way to go, you did a great job" gets under his skin. But he can't scratch it. It just festers there and makes him realize that he is not the man he once was. So who is he, he asks. He refuses to be that man spending his days in bed. But he is unable to make his body do what is mind is demanding. What a horrible curse. This is not for a weak person. A weak person would perish under the demands of living as a quadriplegic. Only the strong can be given this. Only the strong. We ponder the lessons we are to learn. We ponder and curse and pray and yell and cry and scream. But the people don't see that. The people see us together and almost normal. Trust me. This is not normal.

Tuesday, December 1, 2009

Rehab was full of emotion. Disappointment, hope, anger, frustration, joy. Amazing people. The first night was sleepless as the man in the adjacent bed made anguished noises all night. Tubes into the body to assist breathing. Again and again and again. Temperature fluctuations so severe even the doctors paniced. The first therapy was a Sunday morning. Off to the gym. Two men gave us hope and showed Jed that he could at least assimilate a sense of balance (for seconds.) Their joy was fresh light on the day and tears in the night. And then the standing board. Flat on the board and gently moving to an upright position. Blood pressure so low, how can he live. Feet up, head down, feet up, head down. A litany of saving motions. The body has no memory of how to function. It must be totally retrained.

And then one night Jed dreamed. He dreamed of "dirty dirt and sharp white sand. " We cried together as he shared the dream. It was a vision of God's great gifts that we don't recognize and pass by as nothing important. We began to recognize "the fall" as a gift. One that we would not have chosen, but a gift. Stark, simple, unwanted gift. As we began to open the gift and look carefully at it we saw God's people. Everywhere. Doing their jobs, extending themselves for our benefit. We open our hearts and received the blessings.

Therapy continued. Friends were made. They continue to work their magic with new faces and injuries. They remain a hope giving part of our lives. Marcella, Mike, Elaine, Ernie....and more. They were there for us. Jerry, our nurse. His story can give hope and promise to anyone who listens. His strength and understanding of the process of healing is food for a pained soul. Therapy at Loma Linda was good. It was comfortable and became like family. Singing and piano playing were part of the day. But, right as we began to feel that healing was a possibility for us in rehab, we were told that Jed would be going home. HOME? You've got to be kidding. "Get your team together, because you can't do this on you own." Was the "comforting" instruction I got from the social worker. TEAM? What team? We filed an extension request (appeal) with Medicare. We got two extra days.

Monday, November 30, 2009

Our story begins at 5:30 pm on April 25, 2009. Jed had made plans to install a whole house fan in the shop to keep us cooler last summer. He had purchased the fan and was ready to go. He just needed a few additional measurements. He came down to the shop at noon and wanted to put up the ladder and go up for measurements and I wouldn't let him because we had lots of customers and I thought it would be unsafe. I told him to come back at 5:30 and he was Jed on the spot. Ladder up, Jed up, ladder slipped, Jed down. All in a matter of a few minutes. Eighteen feet down with large furniture in the way. Head bleeding, sirens screaming, he's on a gurney and gone before 5:45. Many fortunate things will and continue to happen in this story, the first of which is that the hospital was literally across the street. He was in ER within minutes. All that I have read and now know about spinal cord injuries indicate that the close proximity to help was indeed a blessing.

That night and many nights to follow were dramatic, horrible, spirit filled and gut wrenching stirred together like bad brownies. The plastic surgeon stitched up the skull cracking gash as the family connected in disbelief. The midnight MRI led us to the next day surgery where his C2 and C3 vertebrae were cored out to relieve pressure on the pinched spinal cord. There was no movement in Jed's limbs.

Twenty days in ICU. Night watches. All night long soaking towels in ice water to bring down the temperature, tracheotomy, intubation. No limbs, no lungs, no voice. Feeding tube. We heard people dying. A young mother in the room next door. And the children wept so. But hope never left. Hope hung out there like fresh sheets on the line. Hope smelled good and the time we could bear.

Jed silently dreamed of suitcases full of arms and legs being brought into his room and being told he was to pick out the ones he wanted. He would mouth,"please take me home," and try to convince the grandkids to sneak him out. Night dreams found him climbing mountains and running races.

He couldn't speak. Reg helped us talk together with alphabet groups. Pat brought the tools. And so we communicated. Drug induced hallucinations and frustrated misunderstandings created havoc in knowing. "Get me a wheel chair and get me out of here." But when the time came to try to sit him up he was a jelly fish and could hold no posture. No limbs, no lungs, no voice, no core. Hope was all we had. Hope and prayer and people.

People. People came from everywhere. Food, prayer, food, prayer. Hope. And then it was time to go to rehab. Late night gurney ride to Loma Linda. Forty days of rehab.

Thursday, November 26, 2009

Seven months ago yesterday my husband fell off a ladder and our lives have been changed dramatically. His spinal cord was pinched, his diagnosis is central core syndrome, and as a result he is a quadriplegic. I've thought that I wanted to share our story but for 7 months I have been consumed with his care and life adjustment. We have however had some remarkable successes I think worthy of sharing. So, ready, set, go, here begins We Did Not Fall From Grace.