Category Archives: Kat

Acceptance Is the First Step to Love

Just a few weeks ago on October 12th I did a talk at TEDx Charlotte. Here it is!

See the transcript below…

From the TEDx Charlotte site:

How we relate to people we don’t understand is more important than we know! Life is too short and the stakes are too high to reject our loved ones. We must find a way to acceptance and love while we live.

What do you want people to learn from your talk? Accepting and loving our LGBTQ family and friends for who they are is not only possible but is a foundation for the best life possible! It’s hard emotional work, and our LGBTQ loved ones are worth the effort.

What action items do you want people to take away from your talk?

1) To understand that they are not alone. It is hard for many of us to accept our LGBTQ loved ones.
2) Understand that their loving acceptance is more vitally important than they know.
3) Feel the urgency to accept… time is short.
4) Just decide to accept this person they do not understand.
5) Seek out support through organizations like PFLAG to help them love well.

Jim is the father of four daughters and 7 grandchildren. He and his wife have been together for over 40 years. Originally from Charleston, SC, he moved to Charlotte with his family in 1999 to join First Union National Bank as a programmer. He is now an Application Systems Engineer with Wells Fargo working with Document Management COE.

Jim loves backpacking, gardening, bird watching, and photography, but most of all, he loves sharing these with his fantastic grandchildren. He has been active in the Charlotte PFLAG organization for 4 years where he is now a member of the Faith Action Committee.

This talk was given at a TEDx event using the TED conference format but independently organized by a local community. Learn more at https://www.ted.com/tedx

[transcript]
Many years ago, one of my daughters had a secret. Now this was the kind of secret you don’t want to tell your dad. But it was also the kind of secret that just can’t remain hidden. So when she was 15 years old she told me and it scared me. I saw it as a problem and I wanted to help her fix it.
Her secret was that she was attracted to girls.
It had to have been hard for her to tell me. It was sure hard for me to hear it.
I thought if she would just change her mind, everything would be okay. So being the wise father that I was, I made it my goal to “help her change her mind”. Here’s what I did…  I let her know how disappointed I was… and then waited for her to change. And I waited and I waited…
I thought I had all the time in the world to wait. But endless time is just an illusion, and that illusion was shattered for me on the 23rd of September 2012, when my daughter was just 26 years old, she died… from a very rare cancer.
After helping her fight that awful disease and then watching helplessly as it took her life, her secret doesn’t seem like such a big deal anymore. But back then it felt enormous.
I hope that my story will help you understand what I mean when I say acceptance is the first step to Love. My dream is that you will get it for yourself and then you can embrace that idea with me that acceptance is the first step to love.
Her name was Leah Kathryn Anderson. We called her Kat. She was the youngest of our 4 daughters and, our special surprise baby. She was a happy youngster and from a very early age, she was different from her sisters. She liked playing with trucks and cars, and getting dirty helping me in the yard. Now they all four loved to act out stories, especially Disney stories and whenever they did, Kat always took the role of the prince.
As a teenager, things began to change. My wife and I, we had already gone through this transition to adolescence with her three sisters, but with Kat it was different. She was dealing with depression and that depression sucked the life out of her and her happy disposition changed to this sullen lethargy.
You have an advantage over my wife and me, because you know about her secret. Kat knew and she knew how hard it was going to be to tell us. It had to have seemed like just a no-win situation to her.
But she hadn’t told us yet, so we didn’t know if this was teen angst or something else, we just knew it was awful!
We blamed ourselves, and we desperately needed help. But we couldn’t even ask for help. We were frozen by feelings of embarrassment and shame. And the downward spiral continued and things got worse and worse until it seemed it could not possibly get any worse. And that’s when she came out to us.
I couldn’t believe it. I’m the kind of person that I had spent my whole life trying to learn the rules and doing my best to follow them (and of course doing my best to hide my mistakes and my failures), but not Kat. It seemed to me that she was choosing anything and everything she could to distance herself from us and our faith.
Now I don’t remember what my exact words were in that moment, but my message was clear. This is unnatural. There is something wrong with you and it needs to be fixed.
I couldn’t even hear what she was telling me because of all the things I was projecting onto her.
Imagine how much courage it took for her to reveal her most intimate secret… to her parents… who she knew would not accept what she was telling them!
I couldn’t see it in that moment, but looking back I realize that she was the bravest person I ever knew. It breaks my heart to think how my rejection must have felt to her.
I did not want to reject my daughter. I just couldn’t see any other way. I wanted her to have the best life possible, but all I could see for her as a lesbian were problems. It didn’t occur to me that it was people like me who created those problems.
In our faith, homosexuality was a sin and the only way forward was for her to change and she clearly wasn’t going to do that. So I realized that I needed a new approach. I needed to stop trying to fix her, but this was not acceptance. I hoped that without pressure from me, she would be able to see her own brokenness and then she could find a way back to the happy, healthy young woman that I remembered.
Instead this quiet confidence emerged and everything about her said, “This is who I am and it has nothing to do with you.”
I began to realize that if I were ever going to understand what was going on, I needed to focus on myself and not on my daughter.  I made a critical decision to deeply examine my own beliefs. I was no longer satisfied to simply repeat the answers I had been taught. I needed to know what I believed and I needed to know why. Kat was my reason.
The Bible was our guide and I brought my questions to it. I was surprised at how little there was. Just a very few verses scattered here and there throughout this huge book.
In my faith, homosexuality was a big deal. I was confused. Why wasn’t there more?
What little I found did seem to be against homosexuality, but as I dug just a little deeper I came to see that that these biblical passages had nothing to do with the questions I was asking.
And I found I could no longer use the Bible to justify my rejection of my daughter’s sexual orientation [and my driving question changed from asking, “Is this sin?” to a much more helpful question…  “Are my words and actions loving?”] I unintentionally skipped this on the TEDx stage, but it was important enough that I wanted to keep it here in the transcript.
This transition took a lot longer than it had to. And I have struggled to understand why, As much as I loved my daughter, why was it so hard for me to just simply accept her as she was?
As I peeled back the layers, I began to see that I too was looking for acceptance from my faith community and I was very afraid of their rejection. I had seen it over and over, when people disagreed on some points of theology and were never seen or heard from again. That fear was an anchor holding me back, but my love for Kat was greater than my fear.
As I have become more outspoken as an ally, most of the people in my faith community have withdrawn to a polite silence. But not everyone. Not too long ago, someone told me on FB that I had “Lowered my theology to meet my pain.” This person has no idea how hard I fought to hold on to that theology. His comment made me angry, but it also helped me remember when I used to think like that and it helped me remember my journey and left me with a question I think is kind of important. You say that I’ve lowered my theology to meet my pain. What good is theology that doesn’t meet us in our pain?
Somewhere along the way. someone asked me to explain to them about when I chose to be heterosexual. There are many things I don’t understand, but I know my own experience and I was attracted to girls long before I knew anything about sexuality. I clearly remember when I was 5 years old, there was this little girl in in my class… when she walked into the room, my heart skipped a beat and this flood of emotion came washing over me. If someone told me that what I was feeling was unnatural or an abomination, it wouldn’t have changed anything. It would have just added confusion and shame to the mix…
Confusion and shame. That is what my daughter felt. And it was coming from me. How could I have been so blind to the the hurt I caused her.
Kat knew that I was on this journey, but we didn’t talk about it. Until one night when I decided I would tell her how things were going with me… sort of a State of the Dad address. I said to her “Kat, I can tell this is who you are and I could not love you any more completely. I am glad you are gay!”
You see, her coming out brought me face to face with some very ugly parts of myself and my community. Things I had to face head-on and I am a better person for it. I began to see that this “moral high ground” taken by people like me was less about morality and a whole lot more about fear of things we don’t understand. And that fear caused me to behave in some very unloving ways and I couldn’t even see it.
If only I could go back and do it all again. But none of us gets a do over. What if I could write a letter to myself and send it back in time, what I would say?
Dear Jim,
I am writing to you from your future. There are some things I need to give you a heads up about. But first I want to tell you that you are a good dad. . Not because get it right all the time, but because you love your family. There are some heavy things coming your way, and that love will guide you to the very best outcomes.
You have a wonderful faith community. But it’s not important that you agree on every little thing. Your community will be stronger with voices like yours pushing the boundaries and speaking up for marginalized people.
Speaking of marginalized people, when your youngest daughter is 15, she’s going to come out to you as a lesbian. And it’s going to frighten you. It’s okay to be scared. It’s not okay to be mean. When she tells you, don’t talk, just listen. Listen to her as if she is telling you the most important secret of her life (because she is). When she’s done, tell her how much you love her. Make sure she knows this changes nothing about your relationship. And save your rejection for later… you’re going to find out you don’t need it.
You will find the strengths courage to face the fears and beliefs that stand in your way. Don’t take too long. You do not have as much time with her as you think.
As you begin to accept her, you are also going feel alone, but you are not alone. You will meet others who are loving and actively supporting their LGBTQ children. Join them. You need them and they need you too.
Finally, there’s no easy way to say this, but just as you were there to welcome Kat into this world, you are going to be there with her when she breathes her last breath. It’s not supposed to be like that, and there is nothing I could say that would make losing Kat be okay. But know this, Jim. When she leaves this life, your daughter will feel loved and completely accepted by everyone who mattered to her, and you are one of those people. That is worth everything!
Love, Jim
Most people hear a story like mine and think, “It could never happen to me,”  until it does. What are you going to do when it happens to you? Please take my advice and save your rejection for later. You’re not going to need it.
Acceptance… is the first step to love.

Why Is Jim an Ally?

I was asked recently why I’m an LGBTQ ally. Here’s what I said…

I LOVE MY DAUGHTER more than I loved my dogma

I am an ally because I love my daughter more than I loved my dogma.

The youngest of our four daughters, Kat, came out to my wife and me around 2001 when she was 15 years old. At the time, we were very committed, conservative Christians, and to say this was uncomfortable would be a huge understatement. We were devastated!

Our first thought was that we needed to correct this problem. I got lots of literature from a group that was committed to fighting the “gay agenda” and we sent her to counselors who we hoped could “fix” her. I am not proud of that first response, but it was motivated by love and was the best response we could manage at that time.

After much anguish I realized that if she were ever going to change, it would not be in a pressured environment. I decided that the best thing I could do would be to accept that this is who she is and not try to change her. In this way, I hoped that she would be able to stop fighting us. Then she could see the error of her ways and begin to change back.

I was partly right. When we stopped trying to change her, she did stop fighting us. However, it is we, not Kat, who changed. Her confidence in who she was remained constant. Everything about her said unequivocally, “This is who I am and it has nothing to do with you.” We had convinced ourselves that if she were gay, it reflected badly on our parenting. Much of our journey was coming to understand that it was not ‘our fault’.

The first part of our journey was accepting Kat. The last leg of our journey was embracing her exactly as she was and that there was no ‘fault’ with which to be concerned. The reward was realizing that she was still the same wonderful woman we always knew.

Sadly in 2011 she was struck by a very rare cancer which she fought against bravely for a year and a half. We lost her on September 23, 2012. It is still hard to write those words. Three years ago (at the suggestion of our wonderful grief counselor), my wife and I joined PFLAG to help us focus our grief in a way that helps us and helps others. Each time I am there, I am inspired by the love and raw courage of the folks who show up looking for support.

Many of our former community think we have been deceived and gone off the deep end. We have jumped into the deep end of the pool for sure. However, what I have found in the ‘deep end’ are many people who are deeply full of love and pain; people who are too busy loving their LGBTQ family to pretend they have their life together; and real people who just want a friend. This is the community I have longed for my whole life!”

Seeking Solitude

P1190081Today, September 23, 2015, is the 3 year anniversary of the loss of my youngest daughter. Every year on this day, I have taken the day off from work to honor Kat and to find some solitude. This year, I anticipated spending the week at the Well of Mercy, where I have gone on retreat a couple of times. When I called to make reservations, I learned that they were booked for an event and my plans were simply not going to happen. Rats! Time to create Plan B.

At that time, my cousin was preparing to walk the Camino de Santiago (he’s back now). Pretty quickly I began to think about my own “mini-Camino”; a backpacking excursion. Backpacking is something I have wanted to do at least since I was Kat’s age. With the help of my old outdoor-enthusiast-friend Gerry and my new friend, Paige (Gerry’s daughter who works with Outward Bound) I am doing it! Backpacking in Pisgah National Forest.

The plan is to be out 3 nights on the trail. No goals for mileage or anything like that. I have nothing to prove to anyone. I just want to be safe and find a bit of solitude.

I’ll have the camera, so there will be photos. I hope to write about it, but we’ll see.

This is Grief

Fog on Table RockGrief is not about the person we lost. It is not an exercise in doing what they would have wanted. Grief is for the person who is grieving. It is self care; a process of integrating the loss into our life. Just as her presence in my life changed the person I am, the loss of my daughter’s presence is changing me.This integration of loss is different from the integration of presence.

The integration of presence is like this… Her influence in my life was gradual. Like all my precious daughters, her presence influenced me constantly. It was not a forceful impact, but a natural change agent. Natural as in the things that happen day in and day out that cause us to love, tolerate, forgive, lead, guide, follow, forgive, empathize with, listen to, share thoughts & feelings with, laugh with, cry with, forgive… Without even trying or being aware of it, each of us is changed by the people in our lives. “As iron sharpens iron, so one person sharpens another.” This is what I mean by the integration of presence.

Unlike the gradual integration of her presence, the loss of her presence was sudden. A shock. Yes, we knew she was ill. We even knew at the end that she was at death’s door, but it was still an abrupt ending to a precious life and to all of the relationships associated with that life. All of us who loved her felt the shock. We all felt the pain. This is difficult to integrate. I don’t want to admit she is gone, much less surrender to it, and yet here I am.

Grief is not at all what I expected. I expected something unfamiliar. What I found was the same old me. I expected a deep sadness that would eventually go away. Of course I am sad at times, but grief is much more than sadness. Grief is a confusing mess of conflicting emotions connected with my loss. It is personal. Pleasant memories that sometimes make me laugh out loud, not so pleasant memories that I would rather forget, pain, emptiness (sometimes shared, sometimes held close) . It’s all part of the package. Each of us experiences it differently. No one has the right to say, “I know just how you feel.” Grief is personal! Even her mom and I are traveling very different versions of the same road. “Get over it and move on with life,” you say? I don’t know what that means. I have no doubt that it will soften as time passes, but when do you stop grieving? To be sure, we do not want to be debilitated by sadness and depression, although there may be periods where that is just what we experience. Grief, whatever it is, is a process that continues while we live.

Grief, whatever it is, is a process that continues while we live.

How is her loss changing me?

  • Since she left us, I understand better how fragile and tenuous life is, which makes it easier to let others off the hook for the odd things they (and I) do. It also makes it harder to say goodbye to those I love.
  • Sure, I still get upset about things, but I find that I get over them more quickly. Her illness and death have helped me understand better that the things I cannot change vastly outnumber the things I can change.
  • I know about things that I never wanted to know about. When I hear that someone has cancer, I can’t help projecting my experience onto them and feeling the weight of what is coming for them.
  • I still know the discomfort of not knowing what to say to someone, but now I also know how much it means to hear simple words of empathy. “I am so sorry.” or “I am thinking of you.”

One year has passed now and it still hurts. Sometimes it takes my breath away when I realize anew that my youngest daughter is not coming home. It still shocks me. It is still abrupt. It doesn’t happen as often, but the similarities with the initial shock of her death are striking. As much as we knew she was dying, her departure was still unexpected. Similarly, as much as missing her has become part of everyday life, that sharp pain of sadness still overtakes me when I least expect it. Just as there is truly no slow, steady movement towards death, there is no getting used to this, no getting over it.

This is grief

Living Presence

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Each of us lives in the lives of others. Sometimes we are fortunate to witness a glimpse of our influence in the life of another person. It could be a word, a quote, a gesture, a choice of restaurants… and we smile to ourselves, “I know where that came from.” But the real treasure, the the beauty of recognizing the influence of another in ourselves, is available anytime anywhere, at the bargain basement cost of a mere moment of reflection.

I know that we live in the lives of those we touch. I have felt in me the living presence of many I have loved and who have loved me. I experience my daughter’s presence with me daily. And I know that this is not limited to those we know in the flesh, for many guests of my life shared neither time nor space with me.

~Elizabeth Watson (quoted in Healing After Loss-Sept 8th)

Reading this quote of Elizabeth Watson this morning, my thoughts went immediately to Kat and her influence in my life. She influenced me greatly both in her life and her death (that word is still so raw and painful). But how do I pin it down and definitively say, “This is how Kat influenced my life”?  In answer to that question, in my imagination a picture appeared of Kat opening a door to a vast beautiful landscape. A garden with full, shady trees, wild grasses and beautifully colorful wildflowers. I step into this landscape which is now part of my world, always there for me to enjoy. Now that I live in this new world, I could try to name every aspect of this landscape to give her credit or I can simply say, “Kat opened the door for me to see life in a new and amazingly beautiful way. My life will never be the same.”

Becoming Real

Kat gazes at the sunset over the Golden Gate BridgeLinda Robertson’s story, Just Because He Breathes, is not our story, but the parallels resonate deeply with me.  It inspires me to share a little more of our story with Kat. When Kat came out to her mom and me, much like the Robertsons, our immediate reaction was to get help for her, to cure her of being gay.

We were already dealing with her depression. She was unhappy with life from the very core of who she was and wore this unhappiness openly on her face. It was embarrassing to take her out in public. We were constantly worrying and wondering what people thought of us as parents. How could she be so inconsiderate as to expect us to deal with this too!?!  If people knew that she was gay, the jig would be up for us. We would be exposed for the horrid parents we truly must be. So we determined to silently endure while we sought a cure.

Over time, I realized that this was not going to be easy, so I formulated a loving strategy. For starters, I began to frame the problem as follows:

  1. Kat is depressed
  2. Kat thinks she is gay
  3. Kat has rejected her faith in Christ
  4. Kat has rejected her faith because she does not feel accepted as a gay woman by the church
  5. Kat’s depression is a result of the conflict she feels between the truth of God and her mistaken identity as a gay woman. Her depression is also related to the rejection of her faith.
  6. I do not like where Kat is. I want her to be well, well adjusted, happy and to know the truth of her (hetero)sexuality.
  7. I knew that I might not get what I want.
  8. I determined that the best possible chance for her would be for us to love her right where she was… completely without conditions. In an atmosphere of truly unconditional grace and love, she could begin to heal.

Somehow I set aside my beliefs about the “lifestyle” she was “choosing”. I honestly do not know how I was able to do this. I didn’t change my beliefs, just decided not to address them with Kat. It was as if I put them on a shelf in the closet (pun intended) and shut the door. My dogma was clearly getting in the way of Kat’s feeling loved and accepted. At that time, she felt more tolerated than loved. It was going to take genuine love over a long time to prove to her that she was truly loved and I was determined to do just that. It was more important to me that she feel loved than that I be right.

It reminds me of this passage from The Velveteen Rabbit (emphasis mine)…

velveteen“Real isn’t how you are made,’ said the Skin Horse. ‘It’s a thing that happens to you. When a child loves you for a long, long time, not just to play with, but REALLY loves you, then you become Real.’

‘Does it hurt?’ asked the Rabbit.

‘Sometimes,’ said the Skin Horse, for he was always truthful. ‘When you are Real you don’t mind being hurt.’

‘Does it happen all at once, like being wound up,’ he asked, ‘or bit by bit?’

It doesn’t happen all at once,’ said the Skin Horse. ‘You become. It takes a long time. That’s why it doesn’t happen often to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out and you get loose in the joints and very shabby. But these things don’t matter at all, because once you are Real you can’t be ugly, except to people who don’t understand.”

~Margery Williams, The Velveteen Rabbit

Over a long time, bit by bit, Kat began to change. As I hoped, as I dreamed, she began to become her real self. She transformed from someone in the pits of despair to someone with hope. Sometimes I go back through photos of her and you can see the transformation in the images. It is amazing and wonderful to see.

Early on, I remember my wife asking Kat if she would she be open to becoming heterosexual in the future. She responded brilliantly with a question of her own, “Will you accept me if I don’t?”  She was really asking if we truly loved her just as she was.  My question unintentionally reminded her that a heterosexual transformation was a condition implied for sometime in the future.

What I did not consider and I did not expect was the effect true unconditional love would have on me. I began to see her differently. Although it was not my intention and certainly not on the agenda, I began to take the whole issue of homosexuality down off the shelf and wrestle with it (alone or with friends… not with Kat).

Bit by bit, this social issue became personal for me.

I think much of the pushback from the evangelical Christian community comes from the fact that this is still primarily a social issue. For many it is simply not personal. It’s easy to talk about “those homosexuals” when you don’t know any. It is much different when you know and love someone… and then it turns out they are gay. (For my friends who have a hard time with my stance on this topic, I ask you to turn off your defensiveness momentarily and replace it with curiosity and empathy. It won’t hurt, I promise.)

As I gradually saw Kat for who she was, I softened. As I wrestled with their sources, the sharp edges of my beliefs began to wear down. As I softened my dogma, Kat felt more and more loved.  As she felt more loved, she became happier and healthier. Lest you think this was a cheap way of making everyone happy, I assure you it was not. It was a long process over several years. I invite you to read about it here.

We lost Kat last year to cancer (Read her journey on Caringbridge). The cancer was completely unrelated to her depression, completely unrelated to her sexuality. It was a rare version of cancer known as PNET. As her doctor so plainly stated up front, she did nothing to cause this. There was nothing she could have done to prevent it. As horrible as it sounds and as inexplicable as it is, it just picked her, plain and simple.

As much as we miss her, I am happy to be able to say that our discomfort about her sexuality was resolved well before she got sick. Somehow we were able to get to a place of loving her unconditionally. Like the Robertson’s story, so often, it takes a tragedy to rock our world enough to help us see the larger picture. When I play out different scenarios in my mind, I am overwhelmed with gratitude that they were not our story…

  • What if we had chosen dogma over daughter?
  • What if we had loved Kat with our words, but only tolerated her sexuality?
  • Worse yet, what if we had rejected her because of her sexuality?

I am thankful that we chose the path of leaning into our own discomfort and taking the more difficult journey towards love and acceptance. I am thankful that our reasons for choosing this path were nothing more or less than our love for Kat.

When Kat left us, she knew she was loved by her family. She felt our love with every fiber of her being. What more could a parent want?

The Wall is Down

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The wall before

The wall is
down.

The wall was a creation for Kat made by some incredible friends. It was never intended to be permanent. I wrote about the creation of the wall in, The Room Built with Love. It was Sunday, September 16th when a group of guys gave up Sunday relaxation in order to help a friend in need. And just 8 months later it was time to bring friends back over to help take it down.

The reason for the wall was to create a private space downstairs in our house where Kat could live. She had decided it was time to stop chemo treatments, so we knew her time with us was short. We wanted to create the best possible situation for her. One of my friends said last night, “We wanted to create a fortress from which she could fight this dread disease. What we actually built was a space where she could die with dignity.”

We wanted to create a fortress from which she could fight this dread disease. What we actually built was a space where she could die with dignity.

This wall was that and so much more. It was a symbol of the love of friends and family and a reminder of the loss of our precious daughter.

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For me, the painful reminders of loss are not so constant as they were. There are fewer and they are further between. But they sneak up and ambush me when I least expect it:

  • Seeing the Bananagrams game in a store. No one could beat Kat at Bananagrams!
  • The wave of grief in the middle of my shower as my mind drifts back to the long, hot showers that gave Kat some small amount of relief.
  • The joy and sadness curiously cohabiting in me while listening to children’s music with my granddaughter and they play, “Down by the Bay”. Little Katie would laugh as she sang over and over, “Did you ever see a bear, combing his hair, down by the bay?” (video below)…

How can things have gotten so bad that the best gift my little girl could hope for was a wall that gave her a place to die with dignity? She had such hopes and dreams! I had such hopes and dreams for her. Her life was cut way too short.

I just want a Kat hug. I miss her so much!

For those who want to know about Kat’s journey with PNET, these links will help:

Sometimes You Just Know

DSCN4633Did you ever know something was true, but it just didn’t feel true? Walking through Kat’s illness with her, most of the time, I felt useless or close to it. I wanted to make her better and I could not. Just sitting in the hospital room with her day in and day out seemed like something that anyone could do. I was just taking up space. Deep down there was a rational part of me that knew it was not true, but I frequently felt otherwise.

But sometimes you just know. Like the back rubs…

Kat loved my back rubs. We had a physical and even a spiritual connection when I rubbed her back. And as a bonus I actually felt my own unique value. When the pain was unbearable for her and it was not yet time for more meds, she would have me press into her lower back with as much effort as I could. Sometimes I would use my elbows to dig into the muscles in the small of her back. However hard I pressed, she could always take more. When she sensed that I was getting tired, she would remind me that she was not going ask me to stop. I would have to decide for myself when I could not do any more.

It puzzled me how a back rub could help this pain in her abdomen. It was clearly not medication and did not make the pain go away. But I knew it provided some kind of relief because she kept asking for me to do it. I asked her once how it helped. Her answer surprised me.

She said, “You know how when you have a tooth ache, you can bite down on something and it brings some relief? It doesn’t take the pain away, but it somehow dulls it. It’s like that.” That I could relate to.

As I rubbed her back, my mind would wander. Many times when I would be so ready to quit, I would think to myself that one day I would long to be able to do it again.  Now through my tears, I recognize that that time has come.

There was a  short time after her chemo stopped when she was feeling better. She still liked to get back rubs, but she would ask for a “regular” back rub. The photo above is a “regular” back rub. The cutie rubbing my back is Kat’s niece, Molly (my grandjoy). This was not the hard pressing on the back that she wanted during the worst of the pain. Once, I demonstrated the hard back rub for her. As soon as I pressed in with my elbow, she told me to stop because it hurt. She could not believe how hard I had been pressing on her.

Love Language

morpheus

When Kat was a teenager and deep in depression, Jeanie and I were desperate for some way to connect with her. We found help in a book named The Five Love Languages for Teenagers. It’s part of a series of books based on the idea that there are five basic ways that people can give and receive love: Gifts, Acts of service, Words of affirmation, Quality time and Touch. This book helped me to think of new ways to lovingly connect with her during a time when she was not very easy to love.

Somehow I determined that Kat’s primary love language was Touch. The conundrum was the fact that as a teenager in the throws of depression, she did not want to be touched. Someone who loved to be touched and did not want to be touched. Ugh!  Over time, I carefully experimented and found that a well timed tickle or wrestling match sent her a message that she mattered to me and that I loved her. I would walk into the room where she was and wave my arms around like Morpheus from the Matrix in preparation for a fight. Then I would do the gesture with my fingers inviting her to “give me your best shot”. If she was in the mood, we’d have some fun. I had to be careful though. She would beat the tar out of me if I did not escape.

When she got sick and first started asking me to rub her back, remembering her love language of touch made it even more special for me. Not only was I meeting an immediate physical request and need, but there was an emotional (even spiritual) connection of love in the very touch of my hands on her back. I felt needed.

Coaching Kat

One night I both understood and felt that I played a part that no one else on the planet could have, but before I tell you about it, I need to set it up… Kat had moved back to Asheville during the Spring and Summer of 2012 when she was feeling better, but the pain had returned. She was becoming less communicative and that had us worried. On Monday, September 10th, Jeanie drove to Morganton to see Kat’s sister, Danae. Morganton is halfway to Asheville so when she left Morganton, she continued up the mountain to check on Kat. She found that Kat was not doing well at all. Her pain was escalating more rapidly than expected and was more than her prescriptions could touch. So she stayed with her for the night. That night it got so bad that she was taken to the ED at Mission Hospital in Asheville.

The next day, they transported her via ambulance to Duke Hospital in Durham. That was to be the last time that she would be in Asheville.  Jeanie sent her off with the transport team in Asheville and I received her from them at Duke. I don’t think the transport team had ever experienced a hand off quite like that before. Jeanie and I were a great team fighting for Kat.

That night, the focus was on getting Kat’s pain under control using a PCA machine. The PCA gave a continuous dose of pain meds through her port, but also allowed her to increase the dose by pressing a button to get more (a bolus dose) whenever she needed it… (but within limits). They limit it four ways, the continuous dose, the bolus dose, the minimum time between boluses and the maximum dosage in a given time. It took time to get her stable, but by late that night, they had increased Kat’s meds enough that she was finally resting and so was I.

The interns who were on duty that night were doing a terrific job. But, they did not know Kat and did not understand how she needed to be approached. They are trained (for good reason) to try to give as little pain meds as possible that will do the trick. If they give too much, it could kill her. They were about to learn some things about Kat…

Around midnight, I was awoken by an annoyed Kat asking her nurse what she was doing. Some patients are completely trusting of the medical staff and never ask questions. Not Kat! She always wanted to know exactly what was happening and why.  Her nurse explained that she was changing the PCA machine to turn off the continuous dose completely. Kat went ballistic! She was extremely angry and frightened. She knew from experience what was coming with her pain. Through tears of fear and pain, she reasoned with the nurse that without the continuous dose, she would fall asleep which would cause her to miss an opportunity for a bolus. Without the bolus dose, she would wake up in excruciating pain. Then it would take extra meds given directly by the nurse and lots of unnecessary time and pain to get it back under control. Kat’s voice was the voice of experience begging her to not do this.

The poor nurse’s hands were tied. She had to do what she was ordered to do, but she was also sympathetic to Kat’s plea.  I was in full agreement with Kat and I asked the nurse to let the doctor know that we wanted to see him or her. She agreed to call them in.

As far back as I can remember, Kat had a short, hot temper, which got her in plenty of trouble when she was a youngster. When she was a child, this seemed like a character flaw that we were somehow supposed to fix. At the very least, it was our job to help her overcome it. During our journey with her through this illness, I came to see her anger in a different light. This “character flaw” was actually the flip side of the very strength she was able to tap into to fight this awful disease. What we saw as a weakness was actually one of her greatest strengths.

There in the room after the nurse left, Kat was as angry as I have ever seen her. I (on the other hand) was drowning in helplessness. Here was my daughter in horrible pain, dying and not a damned thing I could do to make it better. She and I both know what needed to happen, but felt  powerless to make them change it. We both knew it was going to be a long, painful and sleepless night. I was already rubbing her back hard in order to help her through it.

In that moment, I had a eureka moment. I am not sure how it happened, but it came to me that there was something that I could do. Kat needed me to help her in a way that only I could. In a flash, I was on. I changed roles from hand-wringing bystander to life coach.  I affirmed her anger and her reasoning. I let her know that I agreed with her about what was happening and what needed to change to make it better. She needed to have this order reversed so that she would not miss the pain meds she needed and I was ready to help her fight for it.

Then I told her something that she did not expect. I told her to hold onto that anger. It was just the tool to help get what she needed. I coached her to talk to the doctor the same way she talked to the nurse. I had noticed that she was usually more aggressive with the nurses than the doctors. In that moment, I had objectivity that she did not to know that this was not the right time to be deferential. Her emotion would communicate an urgency that reason alone could not.

Thankfully, the doctor was there before we knew it. She stepped in and introduced herself and asked how she could help.  Kat let her know just how upset she was about the decision to turn off the continuous dose. She rationally explained her reasons, but also with passion from fear of the coming pain.  I was so proud of her.

The doctor listened to her and explained that another intern had made the decision earlier to stop the continuous dose. She explained his reasons for making that decision. Then without hesitation, she said that she agreed with kat and would reverse the decision. Then she left to do just that.

By this time, I was lying on the bed next to Kat rubbing her back. She was sitting with her legs hanging off the side of the bed. My arm and shoulder were sore from pressing so hard, so I used my leg to push against my arm in order to give it some more pressure. While doing this, I began to talk her down. I told her that the anger had done its work. She was getting exactly what she asked for. Holding onto the anger was counterproductive at this point. Gradually she calmed down and soon the nurse came in and put all to rights again with the PCA meds.

That night, I had a feeling of accomplishment. I was the only person in the whole world who could have done that for her. In no way do I mean to diminish what anyone else did for her in any way. I could surely have never fought for Kat the way Jeanie did, but in that moment no one could have fought for her the way I had either. No one else there knew her the way I did. My investment in our relationship laid a foundation of trust that allowed me to speak frankly and guide her. It was a moment when I felt the truth that was true all along. My presence mattered. Sometimes you just know.

Dark and Stormy Night

The storm was coming in from a different direction than they normally did. I was inside the house and noticed that the sky outside looked odd, so I went out to investigate.  I have seen lightening before. I have even seen lightening go across the sky within a cloud before, but I had never seen anything like this in my life. The lightening was streaking from the distance halfway across the sky. I am not sure of the year, but it was sometime in the early 90’s.

Lightning Storm smI called the family to come out and see, but Katie (aka Kat) was the only one who joined me. Maybe it was because I have a history of getting excited about things that others find dull. In any case Katie and I watched this storm in the distance as it sent lightening bolts across the sky for 20 minutes or so before the wind picked up and the actual storm reached us. Fortunately I got my camera and tripod and seized this opportunity to get a good photo.

Katie and I tried to persuade the others to come out and see the show, but they never came. I asked her a few months ago and she did not remember anything about that night, but it is fixed in my mind as a very special shared experience with my precious Kat. I will always treasure this memory. and I am happy to have this photo (that I just uncovered while doing some organizing) as evidence (click the photo for a larger image).

Kat’s Ashes

So many challenges and questions to be answered when a loved one dies. None have been so heart wrenching for us as deciding what to do with Kat’s ashes and then following through with it. Kat’s wishes were to have her remains cremated, but she did not have any preference for what should be done with her ashes. It is a decision no parent should ever have to make for their child. But like all of these challenges, it had to be done. I could never have imagined the heartache and the unbelievable beauty we were in for that day.

TableRockNC

Just north of Morganton, there is a mountain peak named Table Rock (NC). I have fond memories of climbing Table Rock (SC) many times, but this is not that Table Rock. Since Kat’s sister moved to Morganton, we see the outline of this spectacular formation fairly often. Recently on one of those trips to Morganton, a forgotten memory returned to me of a trip that Kat and I took soon after we moved to NC in 1998. She would have been 13 years old and entering the tunnel of teenagedom. She and I drove up into the mountains for a day and hiked Linville Falls and Table Rock. I don’t remember many details of that trip, but what I do remember was a good bonding experience at a time when bonding experiences were hard to come by.

Image48I suggested that we spread her ashes on Table Rock because of my memories of that trip, it will be a landmark that we will have occasion to see often and the mountain actually looks like a monument. Everyone agreed that this was a good choice.

Timing was an issue because we are spread all over the country and are rarely all together at the same time. As it turned out, there was a single day that we would all be in town when nothing else was planned, so it seemed that the date was set for us; December 24th, Christmas Eve.

Family dynamics are never simple not because there is something wrong, but because everything is right. People are different. We all have our own desires and these good desires frequently clash which causes friction. Family histories can complicate matters by making it feel like the same thing all over again, which does not help resolve things. On this day in particular, all of our emotions were on overdrive. It would have been challenging enough to plan and execute a fun trip to the mountains. This trip was the anything but a fun trip. Our purpose was to spread the remains of our daughter, our sister. To paraphrase one of her sisters, none of us wanted to go, but none of us wanted to be anywhere else. So in spite of the friction, we pressed on.

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The next big challenge was the miserable weather. It was a chilly, gray, rainy day. It rained the whole hour and a half drive to Morganton, where we stopped for lunch. After lunch we started up the mountain, which is another hour drive on a good day. The rain soon turned to rainy fog as we entered the clouds. To all appearances, this was a really miserable setup for a miserable job.  Finally we reached the turn off which is about five miles of narrow, gravel road followed by a steep series of switch backs that were paved (thankfully). When we arrived, the parking lot was completely empty. Who would want to come out to hike on such a miserable, Christmas Eve? No one!  This was a genuine blessing-in-disguise because it gave us the whole mountain to ourselves!

20121224_154007We arrived at the parking lot exhausted mentally and emotionally. Everyone one looked to me to be the leader, but I had no real plan. I only knew what I wanted to do. I wanted to hike the one mile path to the top. I was also agreeable to something less than that. After a moment, Kat’s sisters and Justin all began hiking up the trail to the top. Jeanie followed and I brought up the rear.The fog got thicker as the winding mountain road got steeper and curvier and we got slower.

Since our purpose was solely to spread Kat’s ashes, it goes without saying that the ashes needed to be carried to the top. Jeanie was not keen on climbing to the top, but she was determined to be the one who carried the ashes. She said that she carried Kat for the first nine months of her life and she was going to carry her to the top of this mountain to finish the journey. I wanted to help her, but I could sense her resolve. She saw this as her task alone. Along the way, I thought of how Frodo was the one appointed to carry the ring of power in Tolkien’s Lord of the Rings. It was easy to compare Jeanie to Frodo. In my mind, I purposed to be the best Samwise I could be for “my Frodo”. When she stopped, I stopped. When she talked, I listened. When she climbed, I climbed. Several times, through tears she said, “I can’t do this.” This reminded me of Kat’s words when things were at their worst.

As we neared the top, the view became clearer as we came out of the lower layer of clouds. There was still a layer above us with us between the two. The mountaintops became islands in a sea of rainclouds with a gray, overcast sky above. (By the way, other than the first photo of Table Rock, all the photos in this post are actual photos from that trip). After the rain and fog we had been experiencing all day, it was a welcome relief and absolutely beautiful. When I finally arrived at the top, everyone else was patiently waiting for me. I walked around and marveled at the stunning gray beauty in every direction. A sea of fluffy white clouds below with mountain-top islands poking through.

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None of us knew quite what to do next, but we chose a spot where we would do this grim task and walked over to the far side of the mountaintop. Danae looked to the north and pointed out a sundog.  It was pretty and lifted our spirits a bit. I could not put my finger on it, but something did not seem quite right about this sundog. However, we were there for a purpose and this sundog felt like a distraction.

Rainbow

Kat’s ashes were in a small plastic box wrapped in brown paper. Earlier that morning the thought flitted through my mind; wondering how we would open the box. I dismissed the thought, figuring that they would surely have make it easy to open.  There on the summit of the mountain, the box was unwrapped and we found that it was a bit of a struggle to open it. It was not super difficult, but not a piece of cake either. It took three of us to do it. One held the box, one squeezed it to force a gap and a third wedged a car key in the hole to pry it open. Finally it was opened.

Inside this box, Kat’s ashes were sealed in a plastic bag. We pierced the bag with the key to tear it open. By this time, we were all crying. I had not cried so hard since she died. Knowing that this stuff was once her body was too much.

Everyone agreed that I should go first so I took the bag in my hand and reached in for a handful of Kat. Through my tears, I said, “This just feels so wrong.” My meaning was that it was so unnatural to be doing this for our child. In the “normal” order of things, we go first, then our children. I tossed the handful of dust into the air and handed the bag to Jeanie. One by one, each of us took turns tossing her ashes into the breeze. The way the ashes fell had a beauty of its own. The heavier pieces fell like sand and the lighter dusty fragments blew away on the light wind. One of her sisters described it in such a beautiful way…

Her ashes looked like a peach-hue on crushed bone so that when you free them into the mountain air, the wind makes a spirit cloaked in flesh and beaming with life. She dances again.

20121224_164225When I looked up again, the upper clouds had parted and the sun was shining through brilliantly. It was marvelous to see! It was then that I realized what was wrong with the sundog (nerdy guy that I am). It was in the wrong part of the sky. A sundog is always exactly 22% from the sun and exactly at the same height or directly above the sun. This was on the other side of the sky and nowhere near the sun. This was no sundog, it was a real rainbow! A short stubby rainbow to be sure, but a real rainbow! As soon as I said this out loud another rainbow appeared on the southern side. If we could have seen the complete bow, these would have been the bases of both sides.

Earlier that morning, as we were packing, we decided to leave the cameras. The very thought of bringing cameras on this trip just felt sacrilegious or disrespectful, after all, this was not to be a pleasure trip in any way. At that moment, I was sure wishing I had a nice camera in my hand. Fortunately, there are phone designers who thought it would be a good idea to include a camera in our phones. The photos you see here are from my phone on that day. You can also click this link to more photos of our path up the mountain and the view we had at the top. (I suggest the slideshow button to see them full screen). It includes a short video sweeping around the incredible vista.

By this point in our story, the sun was preparing to punctuate the day with an exclamation point as it buried itself in the clouds again on its way to the horizon. So we hurried down, quickly loaded up and began the grueling drive through the fog in the dark!  We were pretty hungry  after all that activity, but found most restaurants were closed for the holiday. We found a Japanese steak house open in Hickory where we had a relaxing and enjoyable meal together before finishing our drive to Charlotte.

The story of Kat’s ashes is not over. We saved back some because Kat had a dream of flying. She also had a dream of skydiving. I have a friend who has his pilot’s license. We were actually trying to arrange a flight for Kat, but she left us too quickly. Wanna guess what is on my to do list now?