There has been so much to happen over the past few years of my life that when I sit in silence and try to go through it all, it feels more like it's crashing down on me, than me sorting through it. When I have felt the lowest (after Dad died, being a "single" parent for almost 10 months, being without a close friend) and I have poured out my heart and cried myself to sleep too many nights to count; I am comforted by the chorus of this song:
"We pour out our miseries,
God just hears a melody
Beautiful the mess we are ,
The honest cries of a breaking heart
Are better than a hallelujah"
Speaking of cries and breaking hearts, I have decided to share about my father's death and the weeks leading up to it. It is simply the most difficult event in my life that I have had to live through. God was there with me through it all. (even when I was too much in a "mode" to recognize Him.)
June 2008
My father's ALS had progressed so quickly that only a year after his disgnosis, his doctor wanted him to get a feeding tube. I (living 13 hours away and still owner of a scrapbook store) decided that I had to go home and be there for dad's next visit with the doctor and for his surgery. The kids and I planned to stay in KY with my parents for about 2.5 weeks so we could then get back to Mississippi, pack and move to Auburn with David before school started.
So on Monday, June 23rd, 2008, the kids and I boarded a plane out of Gulfport headed to Cincinnati. I remember that the kids did very well on the plane and during our layover. I on the other hand was excited to see my parents ( it had been the longest I had gone without seeing them) the last time we saw them was in January. I had gotten a few phone calls from my aunts who pretty much told me I had to get home because my mom hadn't really told me how bad dad had gotten. (Mom told me that she didn't want to worry me because of the business and the kids, etc.)
David's sister Cindy picked us up at the airport and drove us out to mom and dad's house. My aunt, Genie was there. She had come over to help get dad a shower and dressed before his dr. appt., as she had been doing for the past few months. I hugged my aunt and told the kids I was going in to see Pappy (my kids name for dad). As I walked around the corner and into the little tv room, I saw dad sitting in his transfer wheelchair. I was immediately shocked and almost broke down, but I couldn't because when dad saw me, he started to cry. I went to him, hugged him and told him he couldn't cry because I was there or I would start crying and we would all be a mess. ( I was trying to be strong!)
The kids were almost fearful of him at first. He was confined to a chair and couldn't walk over to them as he had the last time they saw him. Mary and Dad had always been closer than Forrest Gump and Jenny ever were and I didn't want that to change especially since his ALS had really ravaged his body. I wanted one thing to be the same! Dad and Mary enjoyed each other's company and it was like old times with them. She was not afriad of Dad in his Bi-Pap mask and machine at night and she even slept in the bed in his room so she could be near him. Dad was only using his Bi-Pap overnight and occasionally during the day if he wanted to nap. I loved that the two of them could communicate without words and could still be the same with each other. It was like nothing had changed between these two (and I loved it!)
I helped Mom get Dad into his motorized wheelchair (which he could still control with his left hand fingers) and we loaded up into the van and headed to University Hospital to see the neuro doctor. He talked to dad about how the progression of his ALS warranted a feeding tube and it needed to be done soon. He felt that with the feeding tube, Dad would be able to get enough nutrients since he could hardly swallow on his own anymore. I was encouraged but at the same time, I felt I was helpless.
The surgery was scheduled for July 3rd (one day after Mary turned 10) and it was to be an outpatient surgery at St. Elizabeth in Crestview Hills. The kids stayed the nigh at David's parents house since we had to be there early. So my mom, myself and my aunt Genie loaded up dad and headed to the hospital. When they took him back I was very fearful but I had been praying for God to be in the entire situation and His Will be done. I'm not sure why I wasn't praying for dad to be okay and for the surgery to be successful. A short time later, they called us into the post-op room to talk with the doctor and we had thought it was done. The doctor told us that Dad had coded during the procedure and they immediately had to stop and bring him back. I think my heart stopped...I thought ("ARE YOU SERIOUS?")...my mom and my aunt were as surprised by this news as well. Apparently the surgery could not be done as an outpatient procedure, it would have to be done through in patient surgery. His breathing had changed so much since his last results showed from the pulmonary doctor and if they tried to do it without taking certain precautions he would not make it. Needless to say, I was miffed at the pulmonary dr for not getting the latest results to the surgeon. Dad was brought back to his room and we were so glad to see him. He was coming out of the ansthesia and he kept repeating something to us, we finally figured out that he was saying,
"I can't breathe." He had apprently been saying this to the people in the OR when they started to put him under and since the ALS had affected his speech, they couldn't understand him. So the surgery was rescheduled for the following Wednesday, July 9th at University Hospital.
On Tuesday, July 8th, we had to take Dad to the hospital so they could have him there early for the surgery the next day. Genie decided to stay the night with dad because he was unable to speak to call the nurses or do anything on his own. (we took the kids to David's parents house every day so they could play with their cousins)
The next morning, we headed to University Hospital. The doctors explained that because of how the ALS affects the breathing and lung capacity, they would try to not totally put him under for fear of how he could breathe. As you probably know, when you use most anesthetics, your breathing slows quite a bit; well with an ALS patient they knew they couldn't do this. As they came to wheel him out of the room, we all gathered around him to pray. My aunt said the prayer; I could not find words. We kissed Dad and then followed him down to the surgery area where we had to wait until he was ready to go in and then we headed for the waiting area. There were so many emotions in that room and each person wore their emotions on their faces. Fear, Peace, Anxious - just to name a few. I tried to read a book but I think I read the same page 6 times so I leafed through a magazine and mostly people watched. Finally the call came and he was out of surgery. We got to see him and the anesthesiologist explained that they had used a technique where they were able to tilt his head back a certain way to leave the air passages open enough to not slow his breathing down with as much anesthesia. We were so glad and dad seemed to be doing well. The doctor told us to go get some lunch and they would page us when they were going to move him out of the recovery area and into the ICU. A few hours later, he was settled into the ICU where he would remain overnight. Dad was worn out but still in very good spirits and he talked a little bit to us before we had to leave him for the night.
They say hindsight is 20/20: Why didn't I question when the ICU nurse said, "His lungs sound a little moist." I remember my aunt and I looking at each other but other than that nothing else was said. I still find myself beating myself up over not asking more questions.
The next morning we were at the hospital when the ICU visiting hours began. We visited in shifts and dad looked great and was joking around about what he had done to the nurse who hadn't answered his page. I was relieved and had great hope that he would be home by the weekend. Mom and Dad's neighbors, the Harts, came to see dad and Merle told the nurse he was dad's brother so he could see him. When Merle came out of the ICU he broke down and we had to help hold him together. We tried to tell him that dad would get better. It was a prelude for me in comforting others.
Later that Thursday, they moved him to a regular room on the same floor as ICU. I stayed that night at the hospital with dad and I was truly scared for the first time. Dad was using his Bi-Pap machine constantly and when he needed something he would try to speak but the mask made it impossible so I would have to remove it but then immediately replace it so he could breathe. He and I made a rule: 1 blink for yes and 2 blinks for no. I would ask a question when he grunted and he would answer in this way. Neither of us slept much, a few minutes here and 10 minutes there.
On Friday morning, they ordered a chest xray and some tests on dad. I was sick. I thought - "Wait a minute, he made it through a tough surgery, there can't be anything else wrong." I was wrong. Dad had pneumonia - the moistness in his chest - wasn't it on his chart from Wednesday afternoon - weren't they already keeping an eye on it?? I remember being in the waiting area at the end of the hall and hearing the news. Mom kept saying, "I knew something was wrong, he wasn't getting better or stronger." I was in shock and they told us that immediately they would start antibiotics and suction to loosen and get rid of any phlegm he coughed up. And so it began.
Friday night, mom stayed with dad and when we arrived at the hospital on Saturday, things were not any better. We suctioned and cared for dad while mom, with the help from the nurses, fed dad through the tube.
That night, Saturday night, I stayed again with dad. This night, I did not try to sleep. I wrote a long letter to dad (one that he would never hear or read) and I silently prayed that God would heal dad because I needed my dad. I also prayed that my dad had made a commitment to the Lord and had given God the control of his life. That night, I never prayed that God's Will would be done - I wanted my dad to live a long life. I cried as a I wrote and prayed but I made sure dad never saw or heard my cries. As the morning light of Sunday morning dawned, I was exhausted. In spirit, In tears, In ramblings, In fear, In hope - I was drained. That afternoon, Genie came to the hospital and was going to stay with dad that night. When she got there around 4pm, she told us to go on and get the kids from David's parents and take them to dinner and enjoy an evening with them. Dad nodded in agreement. So we hugged and kissed dad and told Genie thanks and that we would be back in the morning. Genie told us to take our time coming in on Monday morning and so we decided we would go in after lunch the next day.
That night we played and laughed with the kids and even took them to Sharkeys on 27 for ice cream. The next morning we got the kids ready to go spend the day at the grandparents and mom packed her bag to spend the night with dad and we headed out to grab lunch. As we ordered our drinks, mom pulled her phone out of her purse (it had been off) and turned it back on and immediately noticed some missed calls. The first was from Aunt Genie, the second from dad's brother, Mike. Mom and I quickly cancelled the order and went out to the car as I was calling Genie. I was halfway to the car when Genie said, (I think)
"Michelle, your dad's gone." From my facial expression, mom just broke down in the parking lot and I had to get to her and to my two children who were standing there asking what was happening. I got everyone into the van and called David and told him the news (he was in Mississippi at Entomology Camp) and called my best friend, Raenon so she could start letting others know. I drove and dialed so many numbers and talked to people while I was driving that I don't really remember the trip to the hospital. I was in what I refer to as "GENE SCHARBER MODE." Taking care of business because I knew mom would be in no shape to do so and I was the only child and it would fall into my lap so I embraced this mode wholeheartedly. I had things to take care of and people to make sure were taken care of. When we got to the hospital there were no spots, so I sent mom and grandma in ahead and I told them I would find a spot and be in shortly. (MODE ON) After driving around for what seemed like hours, I found a spot and walked as quickly as I could to the door of his room. It was closed with a note on it:
No one allowed into room without nurse's authorization. etc.
I walked into his room where Genie, Mike, mom and grandma were with dad's body. It was so strange and I thought the room was very bright. I sat in the chair next to dad and laid my hand on his. I looked at his face and tried to memorize everything about him so I would never forget what my father looked like.
I rubbed the back of his hand and tried to memorize what his skin felt like - I wanted to remember.
I smoothed the hair on his head because I wanted to remember what his hair felt like.
I looked at him and tried to memorize how tall he was and what he looked like. I HAD to remember.
There weren't many words spoken until the chaplain came in and began to sing "Amazing Grace", she had an unbelievable voice. She sang because we couldn't. I know everyone tried but I was already feeling numb. I don't know that I cried too much-that I cannot remember. The pastor from mom's church came in and talked with everyone and as soon as he left everyone started saying their goodbyes.
I watched as mom leaned over him, kissed him, held him and told him that she loved him. She smoothed his hair down and kissed him again.
I stood and kissed dad and told him I loved him and then it was time to leave him.
I was thinking as we left the room that this was not how it was supposed to go.
Dad was supposed to be going home with us.
But he went home to a better place on Monday, July 14th.
Having to be the one to tell my mother that dad was gone...
Driving my mother and grandmother to the hospital...
Making phone call after phone call telling people that dad had passed away(while driving to the hospital),,, Having the strength to walk into his hospital room...
Making more calls...
Going to the funeral home and making arrangements...
Picking out flowers and planning the service....
Putting together the memory boards for the funeral home...
God
held me together while I tried to hold everyone else together. There were so many times that God heard
"melodies" from me. I had to be strong for so many and for so long that only my quiet times were my "grief times". God is there for us and never leaves us. He sees each tear and hears each cry/melody. He is patient and loves us unconditionally and I'm so thankful He is and does.
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