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.


15 Responses to “The promise of a life lived well”

  1. Nancy Johnson August 4, 2014 at 10:57 am #

    Leaving this blog journey with the video of Kim doing the ‘Elaine’ dance is the perfect way to remember Kim. Just perfect. Thanks for leaving us with that.

  2. Todd Kathan August 4, 2014 at 10:59 am #

    Thank you John.
    Thank you Kim.

    I’m off to find some fun…

    • Amy Carrier August 4, 2014 at 12:31 pm #

      Sending you a big hug, Todd. I’m following your lead and finding some fun to have today. ❤

  3. Mona Gracen August 4, 2014 at 11:20 am #

    Thank you for that, John. Lots of love to you and Jack. Goodbye, Kim.

  4. Rob grant August 4, 2014 at 11:44 am #

    Sorry for your lost coach, I shed a tear reading this…

  5. Joy Caffrey August 4, 2014 at 11:52 am #

    John, those moments with Jack saying goodbye to his mom will be in etched in my mind. Your words to Jack moment by moment was the finest parenting I have witnessed. Jack is in good hands. Jack’s locking eyes with each of us in the room was transformative for me. I continue to learn from my last hours with Kim.

    I trust you and and Jack to journey onward fearlessly. Of course I love your family motto, which Jack has often said to me with a smile: “Don’t postpone joy”

  6. AK Blake August 4, 2014 at 12:20 pm #

    So beautiful, profound and simple. Thank you for eloquently chronicling the dynamic beauty, the easy and the hard, so that we can all share in this journey and be blessed in so doing. I wish all the best for you and Jack as you move forward with inevitable grace. I’m profoundly thankful to have known Kim and also to have seen the beauty and grace in your own heart as well. Blessings on your journey <

  7. Sue Adams August 4, 2014 at 12:29 pm #

    Thank you ” Jack aka as John” for sharing this last blog. As for mentioned, that was a wonderful way to explain to Jack, about saying Good-By to his mom.
    I can still see Kim doing that dance at Becca and Todd’s wedding. She did love life,she will be missed.

    Sue Adams

  8. Amy Carrier August 4, 2014 at 12:30 pm #

    Wow. Thank you for sharing and honoring Kim’s life and message. As Todd said, I’m off to find some fun. Rest in sweet peace, Kim.

  9. Janet Bachmann August 4, 2014 at 3:34 pm #

    Thank you. I can’t add to what has already been said except thank you again and again.

  10. Joe and Pat Tempesta August 4, 2014 at 6:49 pm #

    We will always remember your family’s journey through ALS with Kim. Thank you for sharing it with us and for your courage and steadfast desire to honor Kim’s wishes and allow her to be herself through it all.. We all have our memories of this journey tucked away for safe keeping and we will use it for strength when we need it. There are so many lessons in this journey. Thank you for sharing it with us and allowing us into this most private and final journey in this life. Live, love, and laugh. We are grateful for the gifts she left us.

  11. Molly Bracken August 4, 2014 at 11:22 pm #

    Thank you, John, for sharing this and for opening your heart to us for the past few years. You and Kim have blessed readers immeasurably with your demonstration of grace and peace, and your decision to choose joy. I will be praying for you and Jack, and all of the wonder and fun that’s left to come for you both.

  12. Dana Felice-Podwol August 5, 2014 at 12:07 am #

  13. Caroline Musselwhite August 5, 2014 at 1:02 am #

    What a meaningful way to help Jack say goodbye. You have never met me, but this journey has been so powerful to follow. I am a friend of a friend, and a speech therapist who works with people who use augmentative communication. Thank you so very much for sharing so much.

  14. Jennifer Catherine August 6, 2014 at 11:47 am #

    Beautiful words and video. : )

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