Learning to Live With Risk

Every month is an awareness month.

It takes only a particular number of signatures to make it so. This month holds two foci of importance to me. May 2-10 was Cleft Lip and Palate Awareness Week. May 15 is Anencephaly Awareness Day. My son was born with a gaping hole dividing his upper lip and roof of his mouth. My daughter was born without a brain.

As I turn these over in my mind, I recall my conversation last week with Melissa Marceau who runs Miss Potts Attic with Bobbi Saenz. “Adapt or die,” she said. I chuckled to myself. Yes, adapt or die, that was my motto in those early days when my son was born.

Each time he woke, I fed him with a cleft specialty bottle, managed his spit up, set him down somehow or handed him off and pumped for the next twenty minutes. He failed to thrive for reasons unknown at the time and our life with a medical baby began. He visited the ICU twice, and lived the rest of the time off and on in the TCU, the transitional care unit, a world in between ICU and the regular floor.

Adapt or die.

His sodium levels were dangerous low. He could not gain weight. He went on TPN, total parenteral nutrition, bypassing the gut system’s method of extracting nutrients from the food to the blood and putting all that good stuff right into him, intravenously through a central line catheter.

This open access to his blood system means we live with the daily risk that he will develop a blood infection, nose dive, and end up in the hospital on fierce antibiotics trying to rid his body of this evil thing that could kill him quickly. In his routine care, those thrice daily medical activities, there is risk. As temperatures swell, and the dressing covering his site where this catheter enters the skin loosens from the sweat that is part and pare of living in California, there is risk. In the normal household hustle and bustle of family life, scissors smuggled into the bedroom by another child, there is risk if the kid gets too curious.

But “adapt or die,” I said. I could crawl into a hole of depression, or we could find a way to live.

Fast forward. The boy is now four and we live in two worlds.

One foot stands in the world medical gloves, masks, sterile procedures, weekly conversations and shipments from a pharmacy in Sacramento, eyeing his dressing on the hotter days, acting as if the older brother had punched someone in the face when we find those smuggled scissors, dancing with a medical pole, and crawling out of bed in the night to tend to a medical pump.

Wearing masks before it was cool

The other foot stands in the world of a four-year-old boy, a bundle of raw emotions, good humor and physical reactivity. He is absolutely normal, drawing on walls, putting underwear on his head as a hat, telling me “I like you, mommy” every couple hours demanding the response “I like you, too,” and chasing the cat around to give it love or pull its tail, which to a boy are about the same thing.

Adapt or die.

After watching the international news in January and February, I watched as locally our society fell to pieces in March and April. The curve flattened and growth in cases slowed nationally and locally, with the exception of the tragic situation of the Turlock Nursing Home, I see those around me facing a choice.

We are beginning a new normal, living with risk.

You can live in two worlds: one with this shutdown on your mind, masks, hand washing and another with all those things that make life good, energizing and livable.

You can persist in the former with dread of another wave, checking statistics, refraining from even those things you might need to maintain relationships or good mental health.

Or you can throw caution to the wind in order to obtain the latter.

But both are possible. Caution without forgetting what we need to live life beyond survival mode, but doing so with more awareness.

So I decided to add a weekly phone chat, horseback riding and a driveway conversation with a friend.

What can you do?

Photos of the Week (vii)

Childlike wonder makes everything clearer (photo from Vintage at the Yard).


When summer comes I’ll look out this window to see nothing other than a beautiful mess of green from this tree.

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The sky after the rain is a powerful thing. We’ve seen many such skies in the past week. Things live simultaneously in shadow and light.

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In the shadows of a hospitalization, Peter discovered the joy of the window sill, the passing cars and barking dogs.


To combat the cold modernism, I used the extra space in my suitcase to bring blankets and pillows from my favorite room of the house to give me a moment of joy when I entered the room each night.


Are there better moments then coming home? It’s noisy and chaotic but, as she says, “there’s no place like home.”


And in that joy of reunion, we celebrated the birthday and death anniversary of my daughter Celeste. I put her momentoes around the room. An indescribably dear friend presented a homemade birthday cake, flowers, balloons and card written to Celeste.

Even in the midst of sadness missing her, we find joy in acknowledging her presence in Heaven.

Shadows and light live together in the aftermath of a rainy day.

A Strange Year

It was a strange year.

On one hand, we experience the greatest sorrow imaginable in our young lives, our child died. The first quarter of the year was filled with a deep sorrow.


After she died, I looked around and asked myself, what is life to be like now?

In asking the question, I learned my Masters in Clinical Psychology was of no use to me in the state of California. At least the question was settled. Since it still seemed a pipedream to complete California requirements for licensure, I was relieved to no longer feel I was not doing what I should be doing. It was impossible. We need to be near family. We need to be in California right now.

I looked around again. What else can I do? I began to write.

And after finding my rhythm, thinking again and again how I would love to write news stories on community events, I saw an advertisement in our local paper asking for a part-time freelance writer, or stringer, in newspaper speak. The publisher was thrilled when I wrote him.

Now, I have the freelance writing, the newspaper writing, the weekly column and can see the finish line in my memoir on our journey of darkness and light. One writer astutely put it, “writing is editing.” This is edit #4 which I think will be a very productive edit. Then I plan to read it to someone for feedback. Then it might, might I say, be time to send it off. Regardless, it will be time to apply myself to the book proposal.

Meanwhile, my husband’s story differs only slightly. He began to play cumbia. I reached the dream of being paid to write and he reached the dream of being paid to play. He began to sell wind chimes.


More than all this, around the corner, on his second birthday Peter will have been five months out of the hospital. Five months without imbalances, infections or rule-out fevers. Pink eye landed him in the hospital last year. Mild colds landed him in the hospital. Inexplicable, life-threatening immune reactions landed him in the hospital. Over the course of five months, the hospital faded into the distance. Life at home is normal.

Two years of terror and heartache, one crisis after another, and then the springtime.

And yet, I wonder. I wanted to write, “and then the springtime, when all our dreams come true,” but then I remember what New Year’s Day was really like.

I wept at her grave wishing she were with us.

Then I suppose the wisdom is that no matter what we achieve in this life, heaven is our home. Our longing ought never to stop. These are not the things that matter. To be honest, if it were not for Celeste I am sure I would forget in this season.

It is a season. Though I stare at the meadow now on the trail up the mountain and feel the breeze that brushes against its sweet stream, I know this is only temporary. Life is not meant to be sweet forever, it is a valley of tears. One day our path will turn…and that’s okay.

Because the meadow is not far away. It never was.

Nor is it the goal. The summit of the mountain is our destination, whether the view is fragrant and green or dusty and barren.

One day, Peter will get sick again. With his wonderful doctors I do not expect him to be in danger again, but sick and we will be separated.

One day, I will either be pregnant or sorrowful that the season of new babies has passed. For this, I will not presume on what God has in mind for us. I hope to take what comes with gratitude and trust.

One day, there will be more deaths, because living is dying. It cannot be avoided.

One day, my heart will break because my other children suffer.

But today is not that day. Today I can take the good and the sweet, embrace my work and projects and wrap my arms around my children laughing at a healthy two-year-olds antics. I take it and rejoice, strange as it is.

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Days of Promise

Today is the Solemnity of the Assumption of the Blessed Virgin Mary.
Today is one of the days of promise.
The Immaculate Conception is the day we celebrate God’s gift of redemption to Mary, through the merits of Christ cross, applied retroactively in order to prepare a place fitting for God-made-man to dwell. In the same way, he applies the glory of his second coming retroactively by assuming her into Heaven, body and soul.
In this, he honors his mother and shows us the way.

Oil painting of the Assumption of the Virgin by Titian, 1516 - 1518

Today is a great day for me. Last year, I read post after post, related the Assumption to the Theology of the Body and resurrection of the dead. None of this resonated.
I have only held one deceased person in my arms, the same person I held within my body. This girl leaped with joy at John the Baptist did in utero. With the glow of angels around her, she died before she had a chance to breathe the air if she would have breathed at all. We did not see her body as it was. At our request, the nurse placed her bonnet on her head before we saw her.
I knew I had two children already waiting for me in Heaven, but I never saw them, never held them. I know there are other dearly departed in Heaven we long to be with, but we did not see them often on earth. My body was primed to know her every movement, as it was with all my children. This year’s celebration is different than before. When I think of Heaven now, it is a richer vision than ever before.

For the Lord himself, with a word of command,
with the voice of an archangel and with the trumpet of God,
will come down from heaven,
and the dead in Christ will rise first.
Then we who are alive, who are left,
will be caught up together with them in the clouds
to meet the Lord in the air.
Thus we shall always be with the Lord.
(1 Thessalonians 4:16-17)

These are days of promise. I will see her perfect body, restored and complete, not as she grew, but whole.

Assumption of the Virgin Mary, Pierre Paul Prud'hon
Assumption of the Virgin Mary, Pierre Paul Prud’hon

It is easy to accept God what God has on resurrection days like this. That is what these days are for – to carry us through the valley and dark times with the light of God’s promise. They are moments of Transfiguration to keep in mind as we travel the Way of the Cross. So let us stop and celebrate, seeing the way it went with Mary, and how it will go with us, should we fight the good fight, and hold fast to the faith.

Sad Haikus

These are from earlier in the week. The memories move back and forth in my heart, sometimes at the front, sometimes at the back, always there.

My peace is the belief in the communion of saints. As C.S. Lewis writes about the mother, it is “a comfort to the eternal spirit within her. But not to her motherhood. The specifically maternal happiness must be written off. Never, in any place or time, will she have her son on her knees, or bathe him, or tell him a story, or plan for his future, or see her grandchild.”

These haikus reflect that reality…our reality.




He sits on a chair

Wishing her to sing her a song

Rocking her to sleep


No song will come out

She is already asleep

On her way to light


Tears fill up his eyes

A man who almost never cries

Cries to say goodbye


Silence fills the room

For death has taken her home

Little baby girl




Filled with emptiness

Memories of silence

Warm blanket on her


Goodbye my sweet girl

For long I will not see you

Till I come to you


A life lived in fear

Waiting for another grief

Mark left on my heart


I don’t know your cry

I never saw you alive

I don’t know your touch



The Story of our Year: a eulogy

At the end of her funeral, Kyle and I walked to the front of the Church and, in front of our family and friends. There , we shared the story of our year, a eulogy for Celeste Casey. I want to share that story with you now.

Man cannot truly find himself, except through a sincere gift of self.

We learned from John Paul II that to love truly is not only to will the good of the beloved but also to be willing to give of oneself, to sacrifice oneself, to that end. There is no title or status change when a parent loses a child. Until recent history and place, parenthood was synonymous with loss. Indeed it still is. From birth when they are no longer protected in the womb, to the first time they fall, to the two-year-old insistence that only one parent may help with shoes, to the four-year urge for independence “I can do it myself” to the age when they really and truly can. Or, more painfully, the first illness, the first injury, the first hospital visit, and the first terrible day when you think of what could have happened, and thankfully did not.

A year and a half ago, we faced for the first time, the knowledge that a child of ours would have a birth defect. Following the birth of Peter, we faced our first NICU visit, first ER visit, first long hospital stay, first fear of losing our child, first surgeries, first inherited genetic mutation, and first understanding that this could have happened with any of our children and future children. But we also faced our first cleft smile, which is the biggest and brightest full-faced smile you can imagine, first easy going baby, first baby to self-soothe bringing some much needed nighttime relief. No cup of suffering came without the relief and joy of meeting this boy and knowing him and living with him in our family.

We were changed by these early experiences.

Armed with the strength of the previous year, we learned of a diagnosis much worse than what we already knew. At 18 weeks pregnant, I could see the sonogram images were not as they should be. Our baby girl had anencephaly, a condition that develops in the early weeks of pregnancy, in which the child does not grow a brain. In my womb, she could continue to grow to full term, be born naturally, and then pass peacefully away. Guided by the Catholic Church’s teaching, we came to understand her life should not be cut short. Over the course of pregnancy Celeste Casey became part of the fabric of this family. “Celeste in mommy’s tummy” entered the canon of toddler speech. To their joy or bewilderment, the older children felt her kick. We experienced an even greater outpouring of love then we had already known.

There has been much grieving in this family this year. In the summer, the loss of a Grandma P, who lived a long-lived life surrounded by 3 children, 13 grandchildren, and many great-grandchildren. In the winter, the untimely death of our brother, Trevor, a man full of potential and love. And now it is spring, and now the death of Celeste who went from the peace and security of the womb straight to the arms of the Father to join her two other siblings lost through miscarriage. With the saints of God, she will pray for this family, she will care for us, as we ached to care for her.

Richard John Neuhaus wrote, “At the heart of darkness the hope of the world is dying on a cross, and the longest stride of the soul is to see in this a strange glory… The cross is not the eclipse of that glory but its shining forth, its epiphany.”

Death on a Friday Afternoon by Richard John Neuhaus

There is no title for a parent who has lost a child.

The grief that comes with faithfulness is built into the definition of mother and father.

We will walk forward in the mystery of life with the joy and suffering that it brings, and will one day, in the hope of God, find meaning in it all.

Parents hold fingers of baby girl