I also pray that if any of you reading this are going through similar struggles you may gain hope, strength and courage in knowing you are never alone.
1 Corinthians 13:12 "For now we see in a mirror, dimly, but then we will see face to face. Now I know only inpart; then I will know fully, even as I have been fully known."
Living in a Bubble...
The last 50+ hours have seemed surreal to us. I’m not sure I can find the words to describe this period other than feeling like I’m living in a bubble. This bubble can’t seem to be penetrated. I'm here alone, trying to make sense of all that’s going on around me, but the bubble’s walls are too thick. People talk, but words aren’t seeping through the thick walls. I speak and my voice is but as whisper as it echoes around me, making little recognition of what I’m trying to say. The bubble’s air is becoming thick, stale and heavy, weighing me down with every move I make.
Let me back up to Wednesday. Steve made the decision to have his defibrillator turned off. What seemed like a critical and ominous task turned out to be quite simple and non-dramatic. Steve’s pacemaker works constantly pacing his heart but fortunately the defibrillator was never activated. Glad to have that fear behind us we were pleased to have Lynn come for a two night stay.
We had a great visit with her. She was able to spend many hours just being with her dad, talking about her children’s summer activities, visiting about their love of shared history and past memories...simply spending time together. When Steve was napping Lynn and I were able to have long talks that were filled with tears, pain and sorrow of what was to come, as well as the tugs at our heartstrings of what we had and have lost. I love Lynn and David dearly and these past few years I find our relationships have grown and changed into a very different and special caring bond as we find the need to draw closer to one another.
Bonnie has also been so available and such a blessing to me. She and Tom spend their summers in Colorado, but due to the fires there and Steve’s failing health Bon has made the difficult decision to stay in San Antonio for a while and spend much of her time with us. I love that she spends her nights with us and has made this her second home before heading back to Colorado soon.
Friday morning Steve, Lynn, Bonnie and I were joined by Brooke and crew for a short visit. Brooke’s visits with her children have been cut drastically back as the noise and commotion seem to jangle Steve. We were all sitting there visiting and out of the blue Harper quietly came to me and asked to sit with Grandy. Curling up under his arm, she placed her head on his chest and softly spoke in her 2 ¾ year old language of their love for one another. Steve has a little ritual that started with Lynn and shared with Elena and then Harper that is so precious it melts your heart to watch. As young babies Steve would cradle their heads against his chest and softly brush their face with his fingers, murmuring “Pretty little baby, eyes, pretty little baby cheeks, pretty little baby ears…” until their eyes would grow heavy and they would fall into a deep sleep. I too have been blessed by those precious caressing hands. So many times he has held my face and stroked it so gently whispering his love for me as I could feel myself grow calm and soothed in his arms.
This Friday morning, as Harper sat nestled in her Grandy’s arms he softly began to brush his fingers across her sweet face. Words could no longer come from his mouth, but Harper needed no words. Steve sat stroking Harper’s sweet face, never taking his eyes off of her. Harper mesmerized by his knowing touch grew motionless as the room fell quiet. I felt tears streaming down my face watching this moment, this gift from a child to her grandfather. Looking up I found Bonnie touched by her brother’s tenderness as her tears fell. Turning to Lynn, eyes also full of tears as her memories drifted back to her childhood days spent in her father’s lap and then remembering Elena’s younger years of feeling her grandfather’s loving touch. My eyes then turned to Brooke and Jared, oh the pain and sadness evident through their tears that welled in their eyes and splashed down their faces.
This is what I call “A God Thing.” It was a moment that will last each of us our whole lives through. It was as if God placed a very special gift in our hands, his fingerprints so evident, his gift showing, enabling us again to comprehend the scope of tenderness, compassion and love that Steve has for each of us.
I don’t think we will ever know why Harper sensed or chose that moment to spend in such intimacy with her Grandy. I don’t know if she sensed that he wasn’t well, that his time with her might be short...I don’t know, but I do know God enabled us to witness this gift and his timing was perfect.
Lynn left to go back to Austin and was an emotional mess. I was thankful to get her call saying she had returned safely. Bonnie left to live her life but asked if she wanted me to come back to spend the night again. I hesitated, thinking there was no need, but then we both simply agreed that she would return.
Friday evening Bonnie came back for dinner and our sleep over. It turned out to be such a fun night with Steve. He was able to recall and communicate many of the funny stories we had with the kids. We laughed, he was relaxed and stayed up a little later than usual. The evening health care worker came and went saying only that Steve had been a bit unsteady around 4 a.m. I got up early, Steve continued to sleep and by 7:30 Bonnie offered to watch and wait for him to awaken.
I always, ALWAYS take my cell phone with me when I walk but this morning, I left the house without it. Coming home I found Bonnie holding Steve crosswise on the bed and knew we were in trouble again. Another seizure and Steve was in need of immediate help.
Jared and Dennis came to help Steve. Hospice arrived and my “bubble” began to grow. They quickly placed Steve on Continual or Critical Care, meaning he had 24 hour around the clock nursing assistance. This is Hospice at its best. There has been a loving, professional, efficient stream of staff flow through our home since Saturday morning. Steve’s condition seemed to worsen as he lay lifelessly in bed. There was no communication and little movement from Steve. My bubble became a vacuum, it’s wall so thick now Steve could no longer hear my voice, feel my touch, its walls were impenetrable. I would sit by Steve’s bed, hold his hand, brush his face with my finger, talk to him...but there was little response. All that was in my bubble were conflicting feelings. I was living my biggest fear and worse he was living it even more. What did he know? What was he thinking? How terrifying was his bubble?
Sunday morning came and Steve began to show slight signs of improvement. Sleeping most of the day and responding with nods or grunts, uncertainty hung heavy. By 11 a.m. Steve asked for me. He wanted a peanut butter and jelly sandwich! What?!?! Fresh air began to slowly flow back into my bubble, Steve might be bouncing back again. By evening he was a little stronger and a little more verbal. Bonnie stayed by our side again.
It’s now Monday afternoon. Steve remains bed bound, sleeping most of the time, on oxygen, speaking little. Though he can stand his brain is unable to tell his legs to move, his body is terribly weak, shaky, unstable. The Hospice nurse just left. She informed me that Continuous Care would most likely end tomorrow. I will now hire full time 24 hour care for Steve as they feel he will most likely be in bed from now on. My bubble quivers, they don’t know Steve. He has broken all odds, he well may be up and moving again...who knows?
So this is now our new normal. For how long? No one can say. My bubble is still firmly in place, I wish I could tell you it had burst and I felt like I was among the living again, but that would be dishonest.
So I all I can do is go back to our gift, covered with God’s fingerprints. I picture Steve sitting in the cradle of God’s loving, strong arms. I close my eyes and see God’s fingers gently smoothing out the lines of Steve’s worried brow I can invision him trace the areas of my husband’s sweet face whispering gently to him, “Do not fear...I am with you always...my plans for you are for you good...my timing is perfect...you are in my hands...rest on my shoulders...I love you my good and faithful child.” As I picture Steve I also then find myself and feel the gentle assuring arms of my loving God surround me and whisper, “Come to me all you who are weary and burdened and I will give you rest.” Malachi 4:2
I continue to ask for your prayers for Steve and for our family.
With all my love,
Esther 4:13 “Be still for a while and praise God for His favor, His grace and His awesomeness. God is able to do the impossible and is always near. He loves us unconditionally.”