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.


6 Responses to “Building a Village”

  1. Nancy Johnson July 9, 2013 at 12:13 pm #

    It will be interesting to watch how Jack uses this experience in his ‘growing up years’. A Dr? Research Scientist? But ball player is a good goal to go for now at age four. Bless all of you as always.

  2. Joy Caffrey July 9, 2013 at 12:46 pm #

    John and Kim and Jack.
    count me in your village. John as a parent, I have made very conscious efforts to create a village for our kids. And it matters. And it works. And I am grateful that our kids learn from so many.
    And someday Jack will learn to that the Mariners may not be the Yankees but some day he just may want to go to bat for them….maybe.

  3. marie p. witzel July 9, 2013 at 8:41 pm #

    My heart reaches out to the three of you – how honestly and lovingly you have faced each issue. With that love and trust in each other, direction will come as needed. Someone told me today she had heard a sermon entitled “God will change a scar into a star” Love, Granny (p.s. Bakka would ‘well up with tears’ to have read what you wrote)

  4. Lance Fusarelli July 15, 2013 at 8:19 pm #

    You are one hell of a father. Powerful, moving entry. Most men aren’t half the fathers that you are to Jack.

  5. Darlene Long August 30, 2013 at 11:29 pm #

    My husband was diagnosed with ALS in May 2009. ALS relentlessly teaches you lessons that no one should have to learn. I learned that I could survive and function day after day for years with very little sleep, many nights getting up to reposition him every hour or two to avoid bed sores. I learned a definition for the phrase ‘die to self’ as his care requirements grew and the line between us blurred as i became his hands and arms and legs and feet doing whatever he needed done. I learned that everyone has a breaking point, but it can be reached and breached and then extended again and again. I learned that SS Disabilty is important, even if only to add another name to the ALS victim count to create some interest to find a cure. I leaned that getting help with long term care can become complicated very quickly as ALS limits some insurance options. I leaned that a person has to be their own advocate as well as the caregiver because the ‘system’ assigns you a number and help comes piecemeal. I learned that holding fund raisers is empowering in that it gives you a feeling of fighting back. We have generated almost $500,000 to date (golf tournaments and walks by family members and friends) for research at MGH and ALS TDI. I learned that my husband has needed to feel that he can still contribute to feel less of a burden. I learned that it is best to get family and friends to help with the care as soon as possible, because otherwise, the ALS patient becomes too dependent on one person to provide the care. I learned that pride is a useless vanity. I learned that people will be quick to want to help but that over time they go back to their lives in the natural order of things, and as the caregiving becomes more and more intense, it is a juggling act to do what is needed. I learned that I can go without a shower every morning until his suctioning and cough assist treatment and bath and nebulizer treatment, etc. are done. I have learned that I can go most of the day standing up, eat standing at the kitchen counter, and be satisfied with a couple of frozen waffles heated in the toaster. I have learned that I am blessed to have been able to retire from teaching and have a pension to pay bills and household expenses. I have leanred that the financial expenses that come with an ALS diagnosis are unbelieveable. Our local home health aide provider charges roughly the equivalent of $10,000 per 10 hours of help a week in a year’s time. There are 168 hours in a week. I have learned that my husband’s care is often requiring two people to work as a team as time goes on. I have learned that I must wear a back brace when rolling him over in bed and that my back and neck are feeling the toll of spending so much time bent over him for his care and to try to determine what he is saying. I have learned that while we have a computer system with eye gaze for him to communicate his thoughts, we sometimes use a dry erase board with the alphabet written out for a low tech quick way for him to give me clues for his needs. I have learned that ALS clinics can offer support and ideas for needs, and loaner closets are helpful for equipment. I have learned that money and ‘stuff’ mean little, other than to be enough for basic needs and functional. I wish I had more postive thoughts to share about treatments and financial help, but it seems that local fund raisers and charitable groups are what so many families turn to, and respite care for the caregivers and help with the ALS patients come mainly from family and friends. And yes, this is HARD

    • Nancy Johnson August 31, 2013 at 9:05 am #

      Bless your heart.

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