Tag Archives: ALS

The promise of a life lived well

4 Aug

Jack was already asleep when his mom took her last breath. I left hospice to wake him up and tell him, and although I had already explained to him that this was going to happen he was shocked by the news and was struggling to shake off the deep sleep he was in moments earlier. As we drove to see Kim I explained to him that he would see a lot of different emotions from the people there. Some people might by crying because they are sad, some may be laughing because they were telling fun stories that helped them remember her, some may look relieved, and others angry – but all of those reactions are ok, and any emotions he felt were ok too. I told him there was no right way or wrong way to do this.

Before Jack and I got to Kim’s room I sent someone ahead to gather all the friends and family back to her bedside with the direction to follow my lead even though at that point I really had no idea what I was doing. I felt the weight of this big parenting moment, and regretted that with so much time to prepare I still did not know what to do next and then I remembered my own advice, “there is no right way or wrong way to do this” and the advice of a dear friend, “follow your gut.”

I told Jack that mom’s body had died and that after the body dies we all put one hand on her and take time to reflect on all the things that we get to take with us. Everyone put a hand on Kim’s body and Jack did the same as I told him to think about what he would remember about her, how he would feel when he saw things that reminded him of her, and to fill his heart with how much she loved him. I told him that when each person was ready to say goodbye they would remove their hand from her body and now it was up to him to decide when he was ready. I whispered to him that he could stay there as long as he wanted but that when he was ready to say goodbye to her body he should remove his hand. His eyes scanned the room as, one by one, hands left Kim and each time they did, he looked at the person to soak in the emotions in their faces and their body language. He turned his face away for a time to seek a shred of privacy and then he very purposefully removed his hand. I told him it was a tradition that as the youngest person in the room he would receive a hug from everyone else who was present and he went around the room and gave a deep hug to each person. I moved to his side and put my hand on the back of his neck and asked him if there was anything else he felt he wanted to do before he said goodbye. He thought for a moment and said, “No. I think we should do something fun now like watch a movie or play I spy for things that are purple.”

Know that Jack is talking about how he feels, asking questions and that he is emotionally strong and whole. Jack is going to be ok.

Since that night I have watched Kim’s friends and family come to grips with the reality of this moment, reach for ways to touch Kim through pictures, symbols, and stories, and comfort each other with long, deep hugs. I have witnessed the purposeful breaths and release of tension and emotion. They all, in their own way, said goodbye to Kim’s physical form and collected the memories and lessons learned to keep close as they moved forward. Now it is time to do something fun.

The wisdom of Kim’s Journey with ALS comes down to this I think: the motivation for nearly every decision we make in our lives can be boiled down to either avoiding what we fear or pursuing what brings us joy. One path is filled with worry and regret, and while the other does not always work out the way we want it to, it holds the promise of a life lived well.

This is my last blog entry. Kim’s Journey with ALS has ended and I am ready to embrace what life has in store for us next. Thank you for reading and sharing this story. Wherever you are and whatever your own journey has in store for you I hope you find peace and joy. If peace and joy are within your grasp I hope you find the courage to embrace them both without delay.

Don’t postpone joy.


Kim’s breathing test

22 Aug

Kim asked me to write this post. My first response was, “Do you want this to be a dry statement of the facts we learned this week, an overly positive take on our bad news or something authentic?” and when she said authentic I held her gaze for a moment and said, “really, are you sure?” so here it is.

On November 1st, 2011 we published our first blog post called A Letter to Friends where we broke the news from the worst day in the life of our family. After a year of searching for answers to explain why the healthiest person I have ever known could barely walk anymore I felt like anything the doctors said was going to be a relief, as long as they did not utter those three letters: ALS. It seemed too horrible to be real and nothing could have prepared me for that moment. As we came to grips with the diagnosis, as it became more real to us we began the process of fighting this battle. We have thrown pills, new diets, exercise, doctors, technology, prayer, laughter, love, and more than a few curse words at this disease. We have done all the things you are supposed to do, including make the regular trek to our ALS clinic in Little Rock to measure the progress of Kim’s ALS, learn how to adapt to the changes in what Kim can do, and continue the fight. We knew it was time to talk about a feeding tube because Kim would get tired from trying to eat her meals before she would be full. It was just too hard and a feeding tube could be just another piece of adaptive equipment that would give her the energy and time to do the things she really cared about.  Granted, coming to peace with that was a more arduous process then the last sentence might lead you to believe, but we arrived in Little Rock at peace with that next step.

Each time we visit the doctor the news is a little worse. ALS is relentless. However, there is always hope because even as the ability to walk, hold things, and easily talk and eat disappear – as long as her breathing was good we felt like Kim was ok. This was the litmus test, the breaking point between living with ALS and dying from ALS because in the end, it is all about whether you can keep breathing. When the breathing test equipment would roll into Kim’s patient room she would always immediately become very serious and if the technician made even the slightest mistake in administering the test she would make them do it again. Over the last year her breathing numbers (the Forced Vital Capacity Test) ranged from 89% to 94%. And while Kim was always annoyed at the B+ on her record she saw that as an overall A average and could feel good about it. She made them do the test 7 times on Monday and the best score we could get was a 56%. That is a dramatic decline, a devastating number, and there is no way to be prepared for that news. We were both shocked. In addition to the surgery next week where Kim will get a feeding tube we will also be getting what is called a non-invasive ventilator that Kim will use to help her breathe. How could something that was so real before seem so much more real now?

Kim asked the doctor for a prognosis at the end of the visit and we were told that Kim has more than 6 months, that the Dr. has been doing this for a long time and if she thought we were less than 6 months out we would be having a different conversation, and that Kim is healthy and strong, and young and all of those things work in her favor, but that with ALS – “the disease always wins in the end.”

Strikingly Kim has been in a good mood the last few days. Tired and anxious about next week, but generally happy. Today many people asked me how Kim was doing and at one point I responded, “Physically, not well. The ALS is progressing quickly and it was a hard week, but she was smiling the last time I saw her today. So if the last thing ALS takes from you is your smile that has to count as a win, right?”

Building a Village

9 Jul

Four year old Jack is the smartest, most athletic, and handsome boy that ever lived – the fact that I am his father has in no way biased me in my opinion. Normally my biggest concern for him would be how he will figure out whether to be a billionaire philanthropist, president of the United States, or a hall of fame player for the New York Yankees. But these are not normal times.

Beyond all of his great gifts and the advantages he will have in life he is also unusual in that as a toddler he learned what ALS is. He has grown up in a house full of love and laughter, but he has also watched a revolving door of people come and go to care for all of us, and he has been in the room while the people that are supposed to be the most stable force in his universe suffer and falter and fail. So I have two additional worries for Jack beyond which amazing future path he will choose: how do I protect him from all the emotional turmoil that befalls a home dealing with the ravages of a disease like ALS, and how do I prepare him for a life without his mom?

He knows what ALS is because we made a decision early on to call it by its real name. We did not want him to hear that “mommy is sick” and then wonder if this is what happens to all people who are sick or if this is what would happen to him when he got sick. He has wondered if I will get ALS and asked me directly if he will get ALS. We assured him no not only because we have done the genetic testing to confirm that Kim’s  ALS is not hereditary but also because I still believe that Jack will grow old in a world where nobody has to suffer with ALS.

I honestly don’t know what the effect is on Jack of seeing the height of our anger and the depths of our sadness over the last two years as we came to grips with our new reality. I’ve tried to put him in a bubble and protect him from all that raw emotion, but ALS is omnipresent – and so are young children. He seems to be a kind and emotionally well adjusted boy, but I worry about him. So we tell him why we are angry and why we are sad. If it happens in front of him we process it in front of him. I don’t know how much he understands but somehow transparency seems like the right thing. I’ve decided that in those moments where I can’t keep his life free of these worries then I will invite him in, and then try to build a better bubble for the next time.

He is also learning how to be a man by watching me and so I am aware that he has identified himself as a “helper.” He asks me for more responsibility each day. Most recently wondering why he can’t take a night shift helping mommy and explaining to me that he is very strong (this is the part where he flexes his muscles to me) and can transfer mommy if she needs to be lifted. He wrote on his mother’s day card for Kim this year, “I love my mommy because I help her” and I’ve been told at school that he can be a distraction to the other kids because he looks for ways to help them with their work. It is not a bad thing to watch your dad work hard and help other people but I also want him to identify life as a joy – a pleasure to be savored. So we have found more ways for him to spend easy time with Kim and I’ve taken to spending more one on one time with Jack where we go out to eat together, go for hikes, and otherwise just play together. The kind of daddy time we used to spend during that brief window after he was born and before the diagnosis. It is therapy for both of us I think.

And then there is the specter of what comes next. Jack’s great-grandfather (Bakka) passed away last year and so we have had a trial run of talking to him about death and getting a sense of what he understands and what he doesn’t. We told him that Bakka’s body can no longer visit us but that he lives on in the ways that he touched our lives. His kindnesses, his jokes, the things he taught us to do, his paintings, the feelings of love we shared all continue after the body fails and in that way he is always with us. Someday I will have to say something similar to him about Kim and he is not the first young boy to lose his mom so I know there is a path to doing that part well and working through the grief. What we spend our energy on now is thinking about how his life will change. Specifically, who will be the people in his life. We don’t want a wholesale change for Jack where the people who are filling our home now suddenly disappear, and we don’t want a turnover of completely new people to enter his life when Kim’s body leaves us. So I know that takes effort. We are not just building a support team to get us through this hardship – we are building the village that Jack will grow up with for years to come. I hope I can be transparent with Jack about that part too because he will also be watching me build a family and circle of friends that I can support, that I can laugh and savor the joys of life with, and that I can lean on when I need help. I’ve come to believe that learning how to do the work of building your own village may be the most important lesson I ever teach him – that and how to hit a curve ball for the Yankees some day.