The Making of Milagro Man: A Story of Miracles and Love,Ch.20


Chapter Twenty: Home

It was a very hot late June day when I gathered our belongings, packed our car, and headed home. After saying our good byes at breakfast, the therapists and Steve’s nurse of the day lined up at the front door of the hospital and each one hugged him and told him good bye one last time. They presented him with a quilt that was handmade by a group of women who love to donate their services to the rehab center. Then, they helped me get him into the car and we said good bye to the last hospital on our long and very incredible journey. 

I realized while driving the hour and twenty minute drive to Sedona that I was very, very tired. I had packed up our things in the 112 degree heat that morning. We had a lot to pack. Steve had been requesting things from home that he had missed, so when family came to visit they brought whatever he had wanted. I had also been buying much needed clothes for him during his rehab stay. He was finally out of a hospital gown and dressed in comfortable clothes each morning for his workouts, so he needed several changes of clean clothes always ready for the day. With all of these new items added to what I already had for me, and now the addition of a wheelchair, our car was packed to the roof. 

Steve was in a hurry to get home and out of the car. It wasn’t that comfortable for him and he needed to lay down. I drove in the melting heat with a tired husband, my back aching from all the heavy lifting I had done packing the car, ready to finally relax when I arrived at our cool and peaceful home. 

The kids were there when we arrived. Our son had moved in to help me with Steve, so his things were still all over the place. Our daughter, son in law, and two grandsons were also there to greet us. They had brought over all the medical equipment we were going to need for Steve’s temporarily disabled life. All of these things had been piled in our living room waiting for me to find a place for them. The exhaustion I was already feeling, the extreme heat, a tired husband who was now completely dependent on me, a living room and kitchen full of newly added things, and children excited to see us, totally overwhelmed me. 

I am a person who does not like clutter. Clutter creates overwhelm for me. I want things neat and put away. This was not what I found. I sat on my couch nearly in tears trying to decide how I was going to cope with my new circumstances. My daughter saw my overwhelm and told me they would be back later when I had had a chance to rest some. I thanked her for her consideration, got Steve situated in his lounge chair, and then laid down on my bed and cried.

The enormity of my new job as Steve’s full time care-giver began to sink in. There were no more nurses, doctors, or therapists to assist him. I was it. He was fully dependent on me for all of his needs now and I was still so very tired from everything I had been through with him. The last two months had caught up with me. I needed some sleep, some very deep sleep that wouldn’t be interrupted. Unfortunately, deep, peaceful sleep wasn’t going to happen anytime soon.

Steve was still on high doses of prednisone, so he wasn’t able to sleep for long periods of time. Not being able to move his body was also very uncomfortable for him, so he needed to be moved often during the night. He would wake me up to have me move him or get him a snack. He was always hungry because of the prednisone. We bought a hospital table to put by the bed and I began to put snacks for him on the table so he could eat at night without waking me up, but he still needed to be moved, so I was awake often anyway. 

Our mornings began early with getting Steve out of bed so he could sit in his lounge chair. He was more comfortable moving from bed to chair instead of staying in bed all the time. Even though I had been trained to transport him from bed to wheelchair to lounge chair, it was still difficult for me. Steve still had a lot of water weight and weighed more than he usually did. Under these conditions, he was difficult to lift, even with his help. My son would help me as often as he could, but he had to work and wasn’t always around. Most of the lifting fell on me. Steve felt awful that he was such a burden to me. 

One night, as usual, he woke me up to move his legs for him. It was about the third time I had been up and I desperately needed sleep. I woke up from a very deep sleep, startled and struggling to clear my head. He had been lying there a while, not wanting to bother me again, but really needing his aching legs moved to a new position. I was irritable as I tried to find the right position for him. He apologized for being a burden and I told him he wasn’t a burden that I was just extremely tired and really needed some sleep. We both began to cry. He hated having to ask for help. He knew I needed sleep and he felt so bad that he was the cause of my pain. I rubbed his feet while we talked about our situation. I kept assuring him he wasn’t a burden. He kept apologizing. There was no resolution, only some much needed emotional release. We dried our tears, I gave him a kiss, and fell back into bed for another hour of sleep before he needed me again. This is the way life would be for a while. We both had to accept it.

Our friend, MIchael, the same sweet friend who baked homemade cookies for us when we were in Flagstaff, came over one day not long after our middle of the night cry, wanting to help. He had done home health care for years and he could help me get Steve into his bath chair in the bathtub. He could also come over at bedtime, if our son wasn’t available, to  help me put Steve in bed for the night. It was a huge relief to have Michael’s help. I still had the brunt of the middle of the night and daytime transporting him from wheelchair to bed or chair, but having Michael’s help with the bath and bedtime relieved a lot of pressure and back pain for me. 

Getting in and out of the car was also a major production for Steve. It took two strong men to help him slide across the slide board and onto the car seat. Because of this we didn’t go many places, except to a doctor’s visit or physical therapy session. The one exception to this was one beautiful summer afternoon when we were craving some time in the forest. We planned a picnic with our children. We needed the strength of our son in law and son to get Steve in and out of the car, and everyone needed some time outside having fun, so it was a win/win plan. 

We gathered up our food and headed up to the forest near Flagstaff. It was a perfect day to be out in the fresh air and doing what we had always loved to do. Life felt normal again. Steve was put in his wheelchair and wheeled to our picnic spot where he sat in his outdoor lounge chair. The ponderosa pines cradled us as wispy clouds floated by and rays of sun peaked through occasional branches to touch our untanned faces. It was pure peace. We stayed several hours before loading up to go home. We had desperately needed this time in nature. Nature has always been a connecting place for us, and once again it delivered. We came home happy and a little more healed. 

Steve’s new physical therapist scheduled him for two days a week. Therapy began the week after we got home. Our friend, Nancy Jo, also a therapist, contacted us and asked if she could also do therapy with Steve as a gift to us. She also scheduled two days with Steve. Now he was working out four days a week. His strength improved rapidly with his new therapy schedule. The more he worked out, the more he could do for himself. Within a month, he was lifting himself onto the slide board while I stood by to safely guide him. Mastering the slide board by himself gave us both more freedom. He could now get himself in and out of the passenger’s seat of our car once I got his wheelchair into the right position. After he was in the car, I would fold the wheelchair and put it in the back of the car. It was a lot of  heavy lifting for me, but it was so worth the new found freedom that I was willing to do it as often as possible. Strength brought freedom, so this encouraged Steve to workout even harder with the hope that his legs would also gain the same strength as his arms. 

Things were progressing. Steve was gradually getting stronger. He was seeing Dr. Epstein twice a month and his lab work was looking great. There was still a lot of strength to regain, but his health issues were no longer a threat. We both started relaxing more and having more fun. It was summertime, our favorite time of year and we vowed to make the most of it, wheelchair and all. Life was beginning to feel happy again, and I was finally getting more sleep. 




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9 Responses to The Making of Milagro Man: A Story of Miracles and Love,Ch.20

  1. Mary M-S says:

    Kenna, today I saw a comment you made on Susan J. Tweit’s most recent blog post. You referred to your journey and gave a link to your blog. Until then, I wasn’t aware of you, your journey or blog. I read the entire blog today, and don’t want to wait day by day for new installments, but I guess I can handle it!

    I realize there is too much to say: I want to commiserate, to agree with some of your philosophical comments, to applaud you, your family and especially Steven. But I’ll only say that on your first night back home, I so badly wanted someone to spell you so you could get a massage and a full night’s, uninterrupted sleep to let your body heal. But you managed without it. Love is the greatest healer, and love gives and gives. Fortunately, it also fills and spreads itself. Wishing you and Steven an enormous abundance of all that is real and important as you continue journeying together, healing and loving.

    • Kenna says:

      Mary, your beautiful and loving comment brought tears to my eyes. Thank you for following the link to my blog and reading it. It has been so healing for me to write it. My purpose of writing it has been for me and others. I hope this gives hope to others going through a traumatic experience. My deeply spiritual beliefs and guidance got me through it, but so did my loving family and friends. I sure could have used a massage when I got home, and I did have some offers, but I was afraid to lose the momentum I had going. I thought if I relaxed too much I wouldn’t be able to continue. I know that sounds crazy now, but it was my twisted thinking at the time. :) Life has eventually gotten better for us and Steve is doing great. Now, we are counting all of our many, many blessings. I will be writing more about that soon! :)

      Thank you for your supportive comments. I truly do cherish them.

      With Love,
      Kenna

  2. I have to ditto Mary’s comment about the massage and sleep! I wanted to just call out to you, “sleep, massage!” but then it’s a little past that time now huh? :) I know the feelings you speak of – the feeling of losing momentum, of being so tired that you just want to cry, and everything that goes with it. I really learned to ask for the help I needed through my husband’s cancer treatment. It was a big lesson for me. Help both from above and here on this plane! I am in awe of your and Steven’s work together. I know the journey is a huge one, and filled with many blessings and many challenges! I will be interested to hear if what I discovered about myself and my needs after the crisis had died down match yours. Can’t wait, as always, to read more~
    thank you and xxoo!!

    • Kenna says:

      Thank you, Jill, for your concerns. I did eventually get some massages, and once Steve could begin to move his own legs, even just slightly, I did get much better sleep. It was like bringing home a new born, you know you have to do it, you know it won’t always be that way, so you roll your sleeves up and do what you have to do. I did have some help, but most of it was only things I could do, so I did it.

      I learned in my mid thirties how to take really good care of myself. I had to divorce my second husband to to it, so I did. It’s been a very rewarding spiritual journey for me. During the time Steve was sick, I relied on my spirit to guide me a LOT!

      Thank you so much for hanging in there with me as I write about our big awakening and how it turned into a big gift for us.

      Love,
      Kenna

  3. Sarah Gallwey says:

    Kenna, its late but I finally caught up with your blogs. I am still in awe of how you captured our days in the hospital with Steve. I am taken back to those days and nights and the moments of pure gratitude as it finally looked like he would be okay, and then that strange fear of leaving the safety of the hospital that had saved his life. The bond between the three of us who stood by his bedside those months is one we will always carry in our hearts – it was a journey we will never forget. Thank you for so movingly and beautifully tell our story. I am so grateful for this man’s courage to make it through all that he endured to be this beautiful spirit thats still with us. Love you and thank you for this and so much more, Sarah

    • Kenna says:

      Sarah/Sally, We could not have done this journey alone. We all needed each other. That’s one of the biggest things we learned. I also learned a lot about courage. Steve’s and ours! Thank you for your beautiful comments and continued support.

      Much Love,
      Kenna

    • Kenna says:

      Life is full of blessings. I never knew I would find it in a hospital, but I did. Thank you for reading my story, RMW.

      Love,
      Kenna

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