Mike and I have always talked about death openly. I decided a long time ago that we would not whisper about death at our house. It would have been hard to. We have lost many friends with CF along the way. The first one whom Mike was close to passed when Mike was only about 5.Go here to read about the first time Mike and I talked about CF and dying.
I will recap part of that here.I was folding clothes and putting them away in Mike’s dresser drawers. It was just an ordinary day. Mike was in no particular distress. He was 7 years old. I will never forget this day. Mike was sitting on his bed fidgeting with something in his hands and he said, “Mom, am I going to die from CF?” I felt the familiar stab of pain in my chest, my head scrambled to find the words… I had thought about this before….even anticipated it to some degree….but not now, not yet, my son wasn’t really thinking that this fatal disease could actually kill him was he?? Or was he? Not missing a beat I continued to place clothes in his drawer and appear to be unscathed by his question (I learned this trick from my Aunt Cheryl). “Well, I don’t know Mike,” I began to reply, “none of us really knows how or when we’re going to die. There are lots of ways people die. Some people die from cancer, some people die in car accidents and some people die from CF. What do you think, Mike?” By now I had stopped what I was doing and was sitting next to him on the bed. “Well," Mike began apprehensively, "I don’ know but sometimes I just think that I’m gonna, choke and choke and choke like this (made these horrible gasping sounds) until I just can’t breathe anymore and then I die.” How did he know at 7?
Over the years I have always promised Mike that I would be completely honest with him about the progression of his disease. Even though his learning disabilities created challenges in relaying information, he knew I would never withhold anything. Once he was an adult I was very careful as to when to intervene and when to back away. I know I wasn’t perfect and never had the expectation that I could be.I was there for pretty much every nasty procedure Mike had to endure. I don’t know how Mike got through them all. The strength he had was truly amazing. His guardian angel was definitely on OT most of the time. God gave me strength too. There was one particular time when I had a really hard time.
Mike would get bowel obstructions and they were nasty – he was about 10 years old. Back in the day the thought was that you shouldn’t give CFers any pain meds because that slowed down their breathing and their gut. It was a total obstruction and Mike had eaten a ton of food (as all CF kids need to) thinking that the initial pain was just the normal constant hunger.The treatment was to put a rather large tube down his nose and into his stomach to suck some of the stuff out and then pump in the golytley. On a normal kid putting that tube down would be hard enough but with Mike it took on new levels of difficult. Mike had horrible polyps in his sinuses. They tried to put the tube down a couple times without success. All without pain meds. The thought of this makes me cringe still today. He was already in so much pain from the obstruction that he was groaning/screaming out in pain. This is the only time he ever vocalized any discomfort in all the years of CF and for him to do THAT you knew the pain was excruciating. Having to sit up and tilt his head back while his stomach throbbed was bad enough. Then he had to endure the tube being shoved down his nose through the polyps, past his gag reflex and into his tummy. The tube was so large they were having a hard time getting it past the back of his throat. When they went to pull the tube back out on the third or fourth try all this stuff shot out along with blood. I couldn’t hold back a few tears. Mikey looked up at me with this shocked look and said, "Mom are you crying or did some of that stuff shoot you in the eye?!"
I could hear in his voice and see in his eye he was looking at me to see if he was going to be OK. He was scared when he thought I was scared or upset. I said, “Yes, that really got me in the face, Mikey" (and it had so I didn’t lie). He immediately relaxed. You could physically see the difference.
James 1 :12 Blessed is the man who perseveres under trial, because when he has
stood the test he will receive the crown of life which God has promised to those who love him.
So that was the role I took on as his caregiver. Mike was such a brave kid. He asked for a couple of things. 1) To always be told the truth. 2) No surprises. If something was going to be painful then tell him up front. 3) Tell him how long it would take. No surprises. If any of these things didn’t happen he was not a happy camper. If you told him, well they need to peel off all your skin with a tweezers and it is going to take 4 ½ hours and it is going to hurt like heck for two weeks until it grows back because doing that will help you get better, then if that is what truly happened then he would endure it. Totally random over the top example but you get my drift. The kid was tough.During Mike’s final round this role of mine took on a whole new level of difficult.
When Mike went in to the hospital this last time he was really sick. Things were different. He was reluctant to go back. He said, “There isn’t anything they can do.” I knew to respect him. He waited - trying to get better without IV intervention for a few more days. By the time he went in (which was only days since he had last been in) he was pretty sick. I went back and forth to the hospital to check on him and talk with doctors. On Sunday he had conversations with his father and me about his funeral and being buried. I wrote the blog post about the final round to keep people up to date and also because I knew Mike needed to understand fully where things were.I left that night because he wanted his girlfriend Amy to stay there with him. I went to work the next morning to let my boss know I was going to need some time off and head back to Madison. Before I could get in to see my boss I got a phone call from Brooke. She had a hard time waking him up and did the CO2 level and it was over 80. I asked her how long she thought he had and she told me 48 hours if things didn't change. I called Big Mike and headed back to Madison.
Mike was sleeping on his bipap when I got there and I woke him up. I told him what Brooke had told me. He starred into my eyes and pushed his finger downward meaning now? I shook my head yes. He looked down for a moment and nodded his head. Then he picked up his phone and started texting. Again, the events of that Monday are for another blog post at another time.
Katie came, Big Mike came, Van Deurzen’s came, Amy came back, the Brothers came, it was a very emotional day. Men and women weeping over and with Mike as they came to say good-bye. All except me. I didn’t want to smother Mike. The word mother does not start with an s. I gave people space so they could be alone with Mike. Paul and the boys waited like everyone else to get their chance to get in to see Mike.
But at the end of the day, when he was really tired, he could barely raise his arm and he motioned for me to come over to him. I had to get really close because I could barely hear him he was so quiet. I thought finally, I will get my moment with Mike. I put my ear next to his mouth and he said, “Mom, if I take the pain medicine am I going to die?” I reassured him, “No Mike. It will just make you more comfortable.” He nodded his head and continued, “Mom, if I go to sleep am I going to wake back up?” “Absolutely!” I reassured him. He said, “Oh, OK, thanks mom. Love you.”That is when I knew I wouldn’t get my “moment” with Mike. I was OK with that. Mike and I had shared many moments. He knew how I felt about him. I knew I had said everything I needed to say and he knew how I felt. I know how much Mike loved me too. I had resolved myself to the fact that if I never got another "moment" I would be OK. If I wasn't there at the end God would take care of Mikey. I would be whatever he needed me to be. He drifted off into sleep.
We all got plenty of time to talk to Mikey over the next few days. He made his decision to come home and things took on an even deeper level of difficult.I had researched Hospice months earlier when Mike shared with me his wishes to die at home. I wanted to be prepared. I couldn’t find a hospice who had ever dealt with a CFer. That concerned me. I knew the level of care it would take to keep Mike comfortable and I knew that would fall on my shoulders. Hospice at home is not what most people think it is. Another post for another day.
I was thankful I didn’t have to do this alone. Mike’s father stayed with me every step of the way. My hubby Paul opened his arms and his home to all. The Van Deurzens, Milners and Thiesfeldts and the Brothers all worked together.I was the nurse in charge of meds. Big Mike was a huge comfort to Mikey. He would also help Mikey move from his room to the bathroom and anything else he needed. He also got to be his Dad and Mikey needed that.
It wasn’t easy keeping track of meds while a million other things were going on in my house and my young boys were there. Thankfully, Gail and Fred came and took David. I was exhausted and couldn’t concentrate beyond Mikey and meds. Richard stayed at a friend’s house. It was homecoming week of his freshman year.When Mike would fall asleep there was always the question of whether or not he would wake up again. He would look at me after the nurse would leave and ask me if anything changed. How much more time. Was he still OK. I would reassure him and be honest.
At one point as he was waking up his father was sitting on his left side and I was sitting on his right side. I said I love you Mike and his father said, I love you buddy and I continued, so, so much. He popped his eyes open, “Why are you talking like that! Am I dying?!!”OW, now I couldn’t even say I love you without him getting anxious. His friends, his father – everyone else could come in and talk and laugh and weep and say a million I love yous and he was fine. But if I even looked cross eyed at him he was agitated.
I laughed and replied to him, “Well, because it is my turn! Everyone else gets to come in and talk to you and now it is my turn!” He relaxed.
Sometime Friday a nurse came and told me she thought it wouldn’t be very long. I told Mike and he got understandably anxious. There was medicine to help him with that. I knew the role I needed to play and it was difficult. He and Brooke and I had a plan that he would not be tormented in pain during his final hours. Yet, he didn’t want to be all foggy either. I knew at some point CO2 levels would rise and he wouldn’t wake up. I knew that the horrible coughing was causing pain.Mike was up and about answering Facebook messages and texts. That made him relaxed. Amy stayed with him and read things to him. When he would wake up no matter what time of night Brian, Art, Scott or Bear or one of the other brothers or friends would come over to talk to him. He was content when he knew people were waiting to comfort him. (Love modern technology that allows a quick call or text to get people at your door so quickly Mike thought they were in the backyard waiting ;) – sometimes they were back there and sometimes they were just a text message away).
I was concerned that if Mike was in his last few hours that his focus needed to be spiritual. I watched him while he slept and prayed every minute. Thousands prayed, Pastors came, his Aunts Sue and Kathy would pray the Rosary over him as well. When he would wake up I would say, “Well, you are sleepy. You took a little nap.” I would ask if he needed anything for pain and his dad would be there too. I told him, “Mike, everything you need to do here is done. You need to focus on the cross now. Don’t think about anything you have done. Jesus did it all for you. You can just rest now Mikey, everything is done.” And Mike would fall back to sleep. Everyone continued to pray. People would come and go and sit next to Mike and pray.
He slept soundly for several hours. I didn’t think he would ever wake up again and be conscious. But he did. He woke up and I repeated what I said before. I wasn’t sure how awake he would get. Again, not knowing where his CO2 levels were there was always the question as to how clear his head would be. Well it was clear and he said, “Stop telling me to rest. I don’t want to sleep. What time is it? What day is it?” He was agitated.I have been bedside in this circumstance before. I knew that level of agitation. I knew the coming in and out of deep sleep. Coherent one minute and out the next. Between the stress of the situation, the drugs and the fluctuating CO2 levels – there is no telling what could happen. Mike was distraught and he was going to take it out on me. This became the hardest moment of my life. I wanted to just suck it up and take it but I am human. I realized that if I just let this go he may pass with a rift between us. I couldn’t bare it. I asked everyone to leave the room.
I said, “Mike, I know this is hard. I can’t imagine what you are going through right now. I am here trying to fulfill every request you have. I am also trying to be your nurse and figure out how best to treat your pain and anxiety. I know if you were in Madison and I was your nurse you would have me fired because I suck at this." I paused and he kind of chuckled. I continued, “I’m just trying to do the best I can because I love you. But Mike, if you need me to find someone else to do this I will do that. I will teach someone else as quickly as I can. I want to do whatever it is that you need to make you comfortable and if I make you uncomfortable then we can change this up.” “No! no, I'm sorry Mom.” “I’m just so confused” he said as he grabbed his head because he had another really bad headache. “I just thought I had more time,” and he hung his head and I held him. “I know Mike, I know...” In a way that was our moment. The only moment I received that I got to step out of the role of being his nurse, the grim reaper and counselor and just be his mom. I am so thankful that I had that moment. God knew we both needed it.Mikey was relaxed as long as his Dad and I were there and there were people coming and going and text messages to be answered and Pastors giving him reminders of God's promises. So that is how it went. Mary a new hospice nurse came a little later. She was such a blessing. From then on we told him he was doing great and he had more time. At this point only God truly knew his timing.
So it was a blessing for us that we never whispered about death. If we had we would have missed out on all of these opportunities and blessings that we received that helped Mike pass from this life to eternal life. I am thankful that I have taken the opportunities to live life while thinking about mortality. It made the conversations we had at the end flow freely. Mike was able to tell us what he wanted in advance and we were able to carry those out as best we could.
Many times I see people wait until the very last second to say there I love yous and good-byes. They want to make sure that it is really the final moment before they say them. As if to say them sooner will somehow not have the same meaning or will have the wrong focus. That telling someone how you feel about them or how much you will miss them takes away their hope. I don’t know if that is true. I’m sure it could in some circumstances. I’m sure it is true if you have never talked about these things and then wait until the final round to start talking about them. I guess what I am saying is Mike lived many of his days as if they were his last. He thought about his death. He thought about what others would remember or not remember, what kind of an impact he would make and he talked about it. He wrote about it also. I am finding those notes from Mike now and I will share some of them with you in time.
For me, writing about what I experienced is helping me heal. I also want to keep these memories for my young boys to read when they are older. They may go through something similar and learn from this experience. I learned so much from watching my mom go through a similar experience when my brother passed away. I am not writing an all-encompassing journal of events that happened. I can only write from my perspective because I can only tell my story. To try and say what Mikey or Katie or Big Mike were thinking or feeling during all of this would not be my place. But I also never want to diminish the impact of how much Mikey needed them and the important role they played during his final round. Mike needed everyone that showed up and/or prayed for him. I am so thankful God sent so many people to help us get through all of this.
I also write to continue the fight that Mikey started. The fight against Cystic Fibrosis. Through sharing pieces of his story I hope to share CF awareness with others. This is not just an insignificant disease that makes people die young. There is so much unseen suffering that is endured on a daily basis. Like most CFers we hid most of it. The silence can be deafening. I will continue to speak in pursuit of a cure.
I am very comforted by the words of encouragement I have received from many of you. I just reread Uncle Buck’s message to me. Thank you for your kind words. There was a man, I think he was a brother that stopped me shortly before I left the luncheon after Mike’s funeral. He said I was Mike’s rock and talked to me. I wish I could remember his words. This brain fog during stress like this creates significant lapses at times. Thank you to everyone who is sharing their pieces of Mikey with me now. It was so hard to carry out the role I was asked to carry.
Momsters, this role I played that I wrote about today is just that, my role. It was tough. I know each of you have your own unique role according to your situation. My role was what Mike and I needed. You will carry out your role perfectly, according to God’s plan. Trust in Him. He will see you through your journey. He will give you strength. On this side of CF and on the other side also. It is my prayer that your other side of CF will be after a cure is found and there is no more CF. Not the side of CF I am now on. God bless your journey.
My girlfriend Amy shared this with me:"You die on one day," a hospice chaplain said, "During one moment of one day. All the rest is living!"
Love it forward. Tell someone how much they mean to you today. Send that note or card that tells someone special how much you care. Today, while you are living this life. Love, love, love.
Blessings to you!