What Would You Tell Yourself, Back Then?

My talented friend Elizabeth Aquino, author of the blog “A Moon, Worn as if it Had Been a Shell”,  invited her readers to take part in a video that she was making.

Elizabeth is the mother of Sophie, Henry and Oliver, the wife of Michael, and an elegant writer, an activist and pastry chef. Feeling intimidated yet? But there is no need – she is also one of the warmest, most supportive, empathetic, sharing and inclusive persons I’ve met in the blogisphere. Having a full life of her own, Elizabeth still takes the time and makes regular efforts to care – and participate in meaningful ways – in the lives of others. Hence her membership in the Hopeful Parents community, and her making of the video.

Hopeful Parents was founded by the mother of a son with special needs as an online community providing “grassroots support for parents of kids with special needs.” I was invited to become a regular columnist there after Katie passed away.

At first, I wondered if I should do it; my daughter had already died, and I wondered what I would have to contribute to this community of parents who were navigating the medical, emotional and social world with their children living with disability. Yet Christina, the founder, felt there was value in speaking to the issues of parenting a grieving sibling, as well as the difficulties surrounding pediatric cancer treatment and life after the death of a child.

I never thought of Katie as disabled. I expected her to regain her strength and to get her life back after she recovered from cancer. Yet Katie was disabled by her cancer treatment; she was weakened physically, needed to use a wheelchair, had a nasogastric tube and an IV line for many months, and was in severe emotional distress, at times. She never regained her appetite, had an enormous abdominal scar, had had major organs removed, and was on an oral chemotherapy follow-up protocol until shortly before her death.

Bearing all of that in mind, I trusted that I would find something to write about that would be of benefit to the community, and I was blessed by writing regularly (& reading) there.

Many parents of children with disabilities are practicing living abundantly, though their lives have taken a turn they didn’t anticipate through their children’s needs. Their lives are not easy, but their lives are rich, as you will be able to see from their words in the video.

The question Elizabeth asked is,  

What would you tell yourself, if you could go back to the day of your child’s diagnosis?
I invite you to watch, and leave a comment about it  for Elizabeth, or leave one on her blog (or mine). Here is the link: Elizabeth’s VIDEO .

Thank you, Elizabeth, for asking such a good (and deep) question, for listening to the responses, and for sharing them with the world.

Chocolate Milk and One Thousand Gifts

A few weeks ago, I started putting chocolate milk in my morning coffee. I sit with a cup of coffee on our yellow couch while I read and reflect on daily devotionals. It’s one of my favorite times of the day – silence, softness, warmth, stillness.

When the chocolate milk is warmed up and added to my Half-Caff blend (from the wonderful folks at Grounds for Change), it creates a kind of “aaahhhh” feeling in me. I wonder if this might be the way babies feel when they are drinking their mother’s milk: warmed, comforted, savoring nourishment and peace.

This reminds me that my husband’s family used to make chocolate milk a once-a-week treat. On Saturday evenings, they had a dinner tradition: the meal was always hamburgers with the trimmings, potato chips on the side and chocolate milk to drink. It was a special occasion, to them, and one my husband recalls with happiness.

Is there anything as simple as chocolate milk for which you are thankful?

Have you heard of “One Thousand Gifts?”

Author Ann Voskamp has written a book, started a movement, and created a video which holds what I believe to be one of the keys to happiness and abundant living.

I have seen Ann’s logo on other blogs, but had never investigated her blog. I just started reading her book – could hardly put down the excerpt, and it’s now in my queue at our local public library.

This week, a dear friend sent me this link to one of Ann’s postings, and it hit home in a deep way. Maybe it’s because I have been hearing and thinking about “bucket lists” lately; maybe it’s because  a nurse I know has been called to Haiti to serve. More likely, it’s because I have been deeply listening to hear my own calling – my own next step on this path – and Ann’s posting made me stop. It made me stop and listen in a different way. Several of the posts on her blog have done that.

I think Ann Voskamp is on to something real, something radical, something simple yet vital. So the first gift for which I’m giving thanks today is

chocolate milk.

holy experience

A Different View of Hopelessness

I am a Christian, with a rather colorful religious background. To Jewish people, I believe I am considered Jewish, due to my mother’s family heritage. To Christians, I am a Christian, a member of the body of Christ, baptized and ordained as a Deacon in the Presbyterian Church. In my own eyes, I am a former Christian Scientist who left that religion, was drawn through a “new-born” experience of Christ into membership in a community, who left that community and am at present not a church-goer. See what I mean by “colorful?”

I read, study and pray, attend worship and seminars occasionally, and do the best I can to honor my relationship with God by being a loving, grateful daughter and servant to Him. My faith in Him is sometimes shaky; my attitude is not always trusting. I am doing the best I can under the circumstances.

(Image from Wikipedia)

Though I am a Christian, my journey has been enhanced and enriched by other teachings than Christianity: Buddhist, Sufi, Jewish and other schools of thought have helped to balance and stabilize my walk on the path. Two Buddhist teachers have had a great impact on me: Thich Nhat Hanh and Pema Chodron. I have been reflecting lately on Pema Chodron’s writings and how they contrast with the Gospel. They take me back into paradox, the land of “both/and” describing truth, “rather than either/or” being true.

Buddhist teachings give us tools for getting comfortable with discomfort, for learning to accept what we think is unacceptable, for making peace when we want to fight, for “surrendering,” even when surrender looks like death. The teachings offer an alternative to looking for healing, change, and help…and yet, paradoxically, they can be agents for healing and change. Let me give you an example.

This passage appeared in my inbox from a Christian devotional. I loved it, and found it comforting:

“…we are called to die to various ways of life in order to follow Jesus. The pain of some losses is much greater than others, but having experienced his own losses and death, Jesus is always there to understand, support, and love us. It is in experiencing the pain of our losses that we become stronger followers of Jesus, increasing in our knowledge, understanding and love for Him.” – Susan Tinley, quoted from Creighton.edu in A Daily Spiritual Seed

Now compare that with these words (taken from various pages) in Pema Chodron’s book, “When Things Fall Apart:”

“The spiritual journey is not about heaven and finally getting to a place that’s really swell…Thinking that we can find some lasting pleasure and avoid pain is what in Buddhism is called samsara, a hopeless cycle that goes round and round endlessly and causes us to suffer greatly…

“Hopelessness means that we no longer have the spirit for holding our trip together…we long to have some reliable, comfortable ground under our feet, but we’ve tried a thousand ways to hide and a thousand ways to tie up all the loose ends, and the ground just keeps moving under us…

“To stay with that shakiness–to stay with a broken heart, with a rumbling stomach, with the feeling of hopelessness and wanting to get revenge–that is the path of true awakening. Sticking with that uncertainty, getting the knack of relaxing in the midst of chaos, learning not to panic–this is the spiritual path. [This is also a very good description of learning to survive as a parent of a patient in the cancer ward of a pediatric hospital]

“…Nontheism is finally realizing that there’s no babysitter that you can count on. You just get a good one and then he or she is gone. Nontheism is realizing that it’s not just babysitters that come and go. The whole of life is like that. This is the truth, and the truth is inconvenient…

“The first noble truth of the Buddha is that when we feel suffering, it doesn’t mean that something is wrong. What a relief. Finally somebody told the truth. Suffering is part of life, and we don’t have to feel it’s happening because we personally made the wrong move…

“If we’re willing to give up hope that insecurity and pain can be exterminated, then we can have the courage to relax with the groundlessness of our situation…Begin the journey without hope of getting ground under your feet. Begin with hopelessness…

“Having a relationship with death in everyday life means that we begin to be able to wait, to relax with insecurity, with panic, with embarrassment, with things not working out. As the years go on, we don’t call the babysitter quite so fast…

“Giving up hope is encouragement to stick with yourself, to make friends with yourself, to not run away from yourself, to return to the bare bones, no matter what’s going on…we can gradually drop our ideals of who we think we ought to be, or who we think we want to be, or who we think other people think we want to be or ought to be. We give it up and just look directly with compassion and humor at who we are…

“…the source of wisdom is whatever is going to happen to us today. The source of wisdom is whatever is happening to us right at this very instant.”

For some reason, to me, this teaching is permeated with the unconditional grace and acceptance of Divine Love, or God. But to a Buddhist, it is apparently non-theist (please note that she does not say “anti-theist”). Whatever. It is a peace-giving and healing teaching, which seems to me not hopeless at all, but on the contrary, very hopeful indeed. The hope is that we can stop punishing ourselves and learn to live with compassion, for ourselves – in whatever the present moment has to teach us – and then, for others, as well.

Living with the Questions


What do you do with a statement like the following, when your hopes have not materialized, your loved one has died, your partner has left, you have been swindled, or your prayers have not been answered as you had prayed they would?

“I will bless the LORD at all times; his praise shall be ever in my mouth.

Let my soul glory in the LORD;
the lowly will hear me and be glad.
The LORD has eyes for the just,
and ears for their cry.
The LORD confronts the evildoers,
to destroy remembrance of them from the earth.
When the just cry out, the LORD hears them,
and from all their distress he rescues them.
The LORD is close to the brokenhearted;
and those who are crushed in spirit he saves.
Many are the troubles of the just one,
but out of them all the LORD delivers him;
he watches over all his bones;
not one of them shall be broken.”  Ps 34:2-3, 16-17, 18-19, 20-21


There are so many points to take up in that Psalm! “From all their distress He rescues them.” That didn’t happen the way I interpreted it – I thought that RESCUE meant extrication from the crisis, healing for Katie, cancer defeated, life restored. You know, like a rescue in a lifeboat – you don’t go down with the ship, you get off the ship and it goes down without you. You are taken to land and you pick up the rest of your life – you may have lost your luggage, but not your loved one, not things you thought you couldn’t live without.

Well, that is not what happened; Katie died, and we were left to go on without her. There was plenty of distress, inside and all around. So how can I accept a piece of writing such as that Psalm? What can it possibly mean? What value can it have for me?

Immediately following Katie’s death, it would have created tension and angst in me, but five years later, I know that it is true. He “is close to the brokenhearted; and those who are crushed in spirit he saves.” He is close, when I call on Him. He has saved me; though my spirit has been crushed, it is being renewed through His grace. The writer of the 2nd letter to the Corinthians says it better than I can:

2 Corinthians 4:7-12 New International Version (NIV):  But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. We are hard pressed on every side, but not crushed; perplexed, but not in despair; persecuted, but not abandoned; struck down, but not destroyed. We always carry around in our body the death of Jesus, so that the life of Jesus may also be revealed in our body. For we who are alive are always being given over to death for Jesus’ sake, so that his life may also be revealed in our mortal body. So then, death is at work in us, but life is at work in you.”

What a collection of paradoxes! But does paradox mean they aren’t true? I think not – I think that it may take paradox to speak to mysteries that are larger than our human minds can grasp. How can we speak of such divine activity except in similes, metaphors and parables? This is where Richard Rohr’s writings help me navigate the uncharted waters:

“I don’t think the important thing is to be certain about answers nearly as much as being serious about the questions.

“When we hold spiritual questions, we meet and reckon with our contradictions, with our own dilemmas; and we invariably arrive at a turning point where we either evade God or meet God. Mere answers close down the necessary struggle too quickly, too glibly, and too easily.

“When we hang on the horns of dilemmas with Christ—between perfect consistency and necessary contradictions—we find ourself in the unique place I call “liminal space.” Reality has a cruciform shape to it then—and we are taught best at the intersection of order and disorder, where God alone can make sense out of the situation and we must surrender. All real transformation of persons takes place when we’re inside of such liminal space—with plenty of questions that are open to God and grace and growth.”  – Richard Rohr, adapted from Holding the Tension: The Power of Paradox (CD, DVD, MP3)

Whatever your questions are, your unresolved grief, crisis, or catastrophe, I pray that you will hold onto the hope that you are not abandoned – because you are indeed beloved. Time itself doesn’t heal, but being patient and looking for the light, day by day – sometimes moment by moment – will yield evidence of goodness, which leads to gratitude. Gratitude sheds light on reasons to hope, and the light gradually becomes brighter.

As I listen and watch for God’s movement, it is apparent that reality does have “a cruciform shape” – that the cross is the pattern of our life here on earth. There is suffering inherent in the frailty of this existence. It isn’t personal, but the loving interaction between God and His creation (which does not always look like RESCUE) is indeed personal. God is for us, and we are made for God (if you can’t make peace with the word “God” just now, you could try substituting the word “Love”).  As it says in 1 John 4 (J.B. Phillips’ translation),

“God is love, and the man whose life is lived in love does, in fact, live in God, and God does, in fact, live in him. So our love for him grows more and more…”

The experience of catastrophe is an opportunity to go deeper into that Love, if we are willing to take the risk of surrender. We can also choose to turn away, because God does not force us. Trusting after a catastrophe is not easy; in my experience, it is not neat and tidy, it is not a straight line forward, and it is not painless. It is not even welcome – I would prefer to have Katie back, and would much prefer not to know what I know now – but that is not an option open to me.

I first truly saw the cruciform reality of my life in the place where I had to let Katie go, and begin to come to terms with God in that intersection, with the facts  of her passing (which I dislike intensely) standing all around me. It is a work in progress, to be sure. There are days when I wonder whether this place, this earth with all of its brokenness, is some form of hell; there are days when it seems like heaven. I have no answers, but I am learning to live with the questions.

Keeping it Real: August 16th

I will always strive to “keep it real” in my daily life, in my heart, thoughts, speaking, actions – and that includes my writing.

Tomorrow is the 16th of August, one of the worst days in my life and the life of my family. It is the day on which Katie passed away, five years ago. There is no way to sugarcoat that memory, and no reason to do so. It just is.

It is hard.

It is searing.

It is a tearing-away memory.

It is not easy to watch the images flashing across the screen of my mind, however gently Katie passed – and she did pass gently, by Grace. She still stopped breathing, and her spirit left her body, inert and lifeless, lying on her bed in her own room, while we sat beside her. Just.stopped.breathing.

I asked Gregg and David what they were thinking about the approaching date. They were both quietly aware, both reflective. David mentioned going somewhere that Katie loved, but is scheduled to work that day, so he can’t. Gregg said very little, and will go to work as usual. This is typical for the two of them.

We were on vacation last week in one of my favorite places on earth. I noticed there that I was clinging to David when he did anything that seemed even remotely dangerous. We did a lot of hiking, and he did some rock climbing. If he was standing near the edge of a steep cliff, or on the edge of a long drop-off in a high wind, I had to look away. I begged him to play it safe. This is not normal for me, but I felt the trauma of letting Katie go stealing my own breath away whenever I looked at David on the edge of something that could take his life.

I do not want to keep him tied in any way. But I cannot bear the thought of watching him die. This is reality, and it probably makes his life a bit difficult, but there it is. I have come a long way in five years, but I have a long way to go, one step at a time.

On this trip, we went to the same beach which you see in this photo.Image

I always miss Katie powerfully when we do things that she loved. Here she is, picking up treasures.


And here we are on that beach without her, seven years after the photos above were taken, and five years after her passing:


We had a wonderful time on our vacation. This is the place to which we retreated immediately after Katie’s Celebration of Life, so it has mixed memories for me. It is a place of happy family memories, solace, of peace, of emotion and of joy in the incredible vastness of creation. It’s on the open ocean (Pacific), and you cannot help but feel small and in your place in the great food chain when you stand next to old-growth trees and peer at the unending horizon, read about many shipwrecks on that wild coastline, and see a whale surfacing in its summer feeding ground. I felt frequent, overflowing gratitude for the privilege of being there.

When I went to sleep last night, at home for the first time in nearly a week, Katie came to me in my dreams. I don’t recall the dream, but I certainly felt her sweet presence.

Travel is a great conduit for joy for us (yet there is no place like home). Shortly after Katie’s passing, it was difficult for me to move off of our comfy yellow couch, but now I like to get out more.

How about you? Does travel help, or hurt you after a catastrophe?

Has this changed over time?

When Promises Don’t Look Promising

What if someone told you that you would recover from this catastrophe? What if he told you that your grieving would turn into mirth, joy, laughter, dancing? What would your response be?

I remember feeling that there could be no full joy without Katie’s presence in this world, so that promise of restored joy seemed pretty empty and irrelevant. It seemed impossible to fulfill. But I read it in black and white in the Hebrew scriptures, (Jeremiah, chapter 31 – funny enough, that was one of my favorite passages back in the days when Katie was still alive). But after her passing, it was certainly a stretch to believe those promises. Yet it was part of my spiritual path to at least try to believe it.

I’m going to loosely paraphrase the passage, using The Message translation as the basis, adding a little bit of my own style into the mix. Feel free to look it up HERE and listen to it for yourself – hear what it has to say to you.

God told them, “I’ve never quit loving you and never will.
Expect love, love, and more love!
And so now I’ll start over with you and build you up again,
dear…You’ll resume your singing,
grabbing tambourines and joining the dance.
You’ll go back to your old work of planting vineyards…
And sit back and enjoy the fruit—
oh, how you’ll enjoy those harvests!

…I’ll bring my people back…from the ends of the earth,
gather those who’ve gone blind
And those who are lame and limping,
gather pregnant women,
Even the mothers whose birth pangs have started,
bring them all back, a huge crowd!

Watch them come! They’ll come weeping for joy
as I take their hands and lead them,
lead them to fresh flowing brooks,
lead them along smooth, uncluttered paths.
Yes, it’s because I’m [their] Father…!

Their lives will be like a well-watered garden,
never again left to dry up.
Young women will dance and be happy,
young men and old men will join in.
I’ll convert their weeping into laughter,
lavishing comfort, invading their grief with joy.
I’ll make sure…that my people have more than enough.

Listen to this … wild and bitter weeping

…Stop your incessant weeping,
hold back your tears.
Collect wages from your grief work…

They’ll be coming back home!
There’s hope for your children.

Oh! [You are] my dear, dear son,
my child in whom I take pleasure!
Every time I mention [your] name,
my heart bursts with longing for [you]!
Everything in me cries out for [you].
Softly and tenderly I wait for [you].

…God will create a new thing in this land:
A transformed woman will embrace the transforming God!

I’ll refresh tired bodies;
I’ll restore tired souls…I am sticking with [you] as [you] start over…”

Five years later, and I am here to tell you that it IS true. I couldn’t have told you how it would come about, and I wouldn’t have understood, if you had told me ahead of time, but it is true. I read those promises now, and instead of sounding ridiculously dreamlike, they are coming true.

He is turning my mourning into dancing. It’s not that I don’t grieve for Katie, or miss her; I do both, deeply and often. But mourning is not a full-time, oppressive state of being nowadays, by grace. Can you find even one part of the “love letter from God” which is Jeremiah 31 to cherish? You can take it to heart, and hold it as hope for your own future. God is faithful, and His promises are true.