October 16, 2009 my daughter, Courtney, and I traveled from Pasco, WA to Bourne, MA on Cape Cod to visit my dad. He'd been diagnosed with Lou Gehrig's disease, ALS (Damn Yankees!) Dad was in a rehab center and was scheduled to be moved home within a few days to Pennsylvania. Mom was working to see how he could be transported at the time. That was pretty much the hold up. Regardless, Dad was doing pretty good, all things considered. The month before when the diagnosis was made, all my siblings, Steve, Shea and Dave and some of their kids went to visit Dad. Unfortunately I was in the middle of the Gifford Pinchot National Forest at the time, camping with my husband, Roy, and our kids. Because of the miss, I'd told Dad and Mom I'd come in October. Courtney decided she'd like to accompany me, and I was thrilled with the opportunity to travel with her.
At the time that the promise to travel was made, it was thought that Dad had a number of years of suffering in front of him. ALS is a hard disease, taking one's abilities, slowly and cruelly, starting with the greater motor skills. I was in a great state of anger at that time. My dad was larger than life and I hadn't signed up for this! As October was marching on, though, I'd learned through my brother, Steve, that it appeared that the disease was much further along than we'd originally been told. Steve told me in confidence the week before my trip that he didn't even think Dad would make it to Thanksgiving. I was dashed. I just wasn't ready for all of this. It just made my trip to see Dad that much more important and precious to me.
So, on the 16th, Courtney and I left Pasco, I don't remember what time, probably late morning. Regardless, it was after 11:00pm EST when we finally arrived at the rehab center, in the beginnings of a New England Nor'easter with rain and wind. Mom woke Dad up, much to my chagrin, to let him know I'd arrived. We said hello, and I told him to go back to sleep, that we'd talk the next day. I learned that lesson of life about never counting your chickens before they're hatched.
We took Mom and traveled to my Aunt Elaine's house; she lived in Bourne. She'd invited us to stay there for the few days we'd be visiting and she was helping my mom with the problem of transporting Dad to Pennsylvania, working her connections. So, the next morning, we had a leisurely breakfast while she and Mom made phone calls and we all caught up on each other's lives. We finally got our acts together, got cleaned up and out the door to see Dad. It was late enough in the morning that I was beginning to feel anxious to get to the rehab center to see Dad. I hadn't seen him in, I think, four years, and I was certainly concerned about the upcoming month or months. I wanted to talk to him.
Dad's voice was always booming. It didn't matter to me most of the time. He was a great joker, told wonderful and funny stories. But after all the fun and joking, there was Dad the Wise. He was a very discerning man, a man of God, a caring, loving and forgiving man. I just wanted to hear his voice, to hear him say, "Baby, it's gonna be alright." It's the one thing I would never hear, his voice, clearly, again.
While driving to the rehab center, just maybe 10 minutes or fewer away, Mom got a phone call from the center, telling us not to come, but to go straight to the hospital in Hyannisport. Dad had coded. His heart had stopped, but they'd revived him and sent him to the nearest hospital.
When we arrived at the hospital, Dad was in the emergency area, intubated, not able to talk. NOT ABLE TO TALK! The one thing I wanted more than anything was to talk with my Dad. That was not going to happen again with any normalcy. He tried to speak to me that day, with the tube down his throat. He attempted to say, "I love you." It ripped me to pieces. I couldn't imagine the amount of pain he'd endured attempting to slip those sounds past his lips, but they meant more to me that day than any day ever before in my entire life.
Dad's next stop was ICU. If I remember correctly, he had fluid in his lungs, I believe the onset of which was his aspirating a toast crumb or something a couple of days before. This whole episode had weakened his lungs and his diaphragm. The ALS was working on his diaphragm.
You know, you don't ever want to think about the day when you may have to make the decision to take someone off of life-support of any kind. Apparently my Dad didn't ever want any of us to have to make that decision either. He'd made it for us. See, Dad could have lived longer, if he was willing to live on a breathing apparatus of some sort. But he'd made the decision that he would never spend more than two days on life support of any kind. If he couldn't sustain life on his own, then his time was over. That was that. And as he laid in his bed in the emergency room, and my oldest brother was able to visit him, he looked him straight in the eyes, and held up two fingers, reminding Steve of what he'd told him previously. Steve knew Dad meant business. The two days was so family could gather and then he was to be taken off of support.Well, Steve complied with Dad's wishes. We called all the family together. Roy and the rest of our kids flew to Massachusetts as soon as they were able. My sister and other brother; we all got there.
Dad ended up being on life support via that tube for three days due to some Massachusetts law that required them to attempt to remove it and then put it back in place if the person was distressed in any way. (It's all a bit blurry, but that is what I recall.) So they did that and we had to wait another day. On the 20th, Dad's breathing tube was removed and his BiPap machine put in it's place. I thought he'd be on it for a while and decided I needed a break.
I went downstairs to the Hospital coffee shop with my daughter, Alanna, and then into the gift shop. We'd taken about 15 minutes to drink coffee and talk about the happenings. While walking through the gift shop a heaviness passed over me, like literally above me like a dark cloud. I don't know what that was, and really I don't care. I just know that I took one look at Alanna and said we had to get back upstairs immediately! When we got to the elevators, a family member had just come down looking for me to tell me to get right into Dad's ICU cubicle.
When I walked into Dad's cubicle, my mom, my brothers and sister were all there. No other family was allowed, as we'd previously decided. It was a shock to see my dad. Most color had drained from his face, his previously deep pink lips, very pale. And his BiPap was gone. Nobody realized I wasn't there when they decided to go the next step and remove all breathing assists. I got to the room to witness my dad take his last four or five breaths. It was surreal. I wondered if it was really happening. My mom, a pillar of faith, had believed for a miraculous healing, crumpled and sobbed. I think that was the worst moment, seeing Mom lose her mate of almost 54 years. I have to say though, Mom being Mom, was able to gather herself up pretty quickly and speak in normal tones again. Stalwart is a good word to describe Mom.
We looked at our dad, just a shell of the man we knew and loved, and we laughed. Yes, we laughed. Our dad was nothing, if he wasn't a joker. He'd faked a "death face" more than once over the years. I had no idea if he knew just how accurate he'd gotten it. I took one look, pointed it out to my brothers, and we all started giggling. Then we stopped and said how bad and supposedly disrespectful we were being, but then we laughed again. We knew that Dad would not have minded one bit, being the joker he was. Laughter was the one thing that had always brought us together over the years. We grew up in a household of laughter.
And so, on this fourth anniversary of Dad's passing, I just wanted to put some of my thoughts in print, remember the day, honor my Dad. I've missed him a bit more than normal of recent. Some things in my life have caused me to want to call him and ask for his wise words. In fact, embarrassingly, someone recently shared words of wisdom with me from their own father and I burst out crying. It was very sudden and unexpected. I apologized, explained myself, and thanked that person for sharing as well as mentioning to them the importance of valuing that wisdom for it being readily available.
I can say that as time marches on, I both don't miss Dad as much and then again, I miss him more than ever. I've told friends before that I planned on learning every day of my life, even the last day of my life. I figure, if nothing else, I can learn how to die gracefully. I never expected that I would be shown this by example, but my Dad did that for me.
Thanks Dad. I love you too.











