Birthday Wish to all of you

“A ship in a harbor is safe, but it’s not what ships are built for.”

Today is my birthday. In the past 10 years of my life, I cannot believe the “outside of the harbor” choices I’ve made. Ironically enough, given the quote’s nautical nature, I do not consider “moving across an ocean” to be one of the most trans-formative choices.

I learned a new language (something one can do anywhere). I changed my career path (you can also do this where you are, and consider that applicable to all below). Together, my parents and I mended conflicts well before it was too late (today, they are two of my closest, most treasured relationships). I maintained a healthy physical lifestyle and weight, which wasn’t easy when I couldn’t walk. I published a book. I became “Aunt LaLa” to the Ayres Little Men and added a new family (my “Henry” carries their family name). I gave my hair to make wigs for children with cancer…four times. I faced, and continue to face, my fears (crippling stage fright and fear of heights). I watched marvelous sunrises in gratitude and walked through challenging sunsets in humility. On this day in 2011, I converted to Catholicism, which was the single-most authentic decision I have ever made.

Perhaps, some of the most trans-formative trips out of the harbor are those we simultaneously fear and welcome? Though we are afraid, we know we truly have to go – into the vast, seemingly-unending expanse. Someone calls and says, “I have the perfect job for you, but it’s in Lichtenstein” or someone writes you an email and begs, “Can you please take in this rescue dog?” or even “Marry me, my love?” Life changes in one … Augenblick.

One of mine happened on January 22, 2016 when I saw and heard a strong heartbeat from a machine in Bern, Switzerland. It took me about a second to process that was his (Christopher Henry) heartbeat. Sometimes, I guess, that second is all it takes to pick up the anchor and set sail. Fear be damned. Best decision I ever made, pulling up that anchor.

I know it’s tough and scary. Many times in the past 10 years, my ship has ventured out into the sea only to return battered and bruised. Heartbroken. Sea voyages can be treacherous and arduous. There are literal ups and downs that either propel you forward or crush you. It’s difficult to leave the comforts of a tranquil and serene harbor. Ah…but, that’s not what ships are built for.

I like to imagine wisdom from my four grandparents, as I push away from the harbor each time. They have four simple rules for each journey.

“Be bold, Lulabelle.”

                                                                 “Be authentic, Sweet Girl.”

                                    “Be brave, Granddotta!”

                             “Be peaceful, Princess Wawie.”

 You can do it, too.

Be bold. Be authentic. Be brave! Be peaceful.

Here I Am, Lord…but, do you REALLY need me?

At the Episcopal School of Dallas, we used to sing a hymn that had an impact on most of us, regardless of our faith or disbelief. Perhaps, many students struggling with disbelief benefited from it more than I did? Anyway, it is referred to as “Here I am Lord” or sometimes, “I, the Lord of Sea and Sky.”

“Here I am Lord” was written in 1981 by Dan Schutte. It’s based on two passages, but one echoed from the pulpit in my church in Luzern this morning and reminded me of my ESD days: Also I heard the voice of the Lord, saying, Whom shall I send, and who will go for us? Then said I, Here am I; send me.

It’s Isaiah 6:8. It is about a small voice declaring willingness to go. Choose me. Me. I will serve You. I will be brave.

Even when it isn’t convenient. Even when I am comfortable doing what I am doing. Even when I would really, really, really prefer you phone or Tweet or send a pigeon carrier to someone else for this task.

Even when I feel afraid.

In high school, I sincerely questioned this text. What does it mean to say you are ready? To say you will stop what you are doing and live the life God wants you to live?

I’m decades older now and my answer is still the same: “Here I am, Lord. I will go.” I still do not know why I must or how I will, but I know I will always turn my life over to God, if He’s found a use for it.

I sang this hymn at the funeral of my beloved Zachary “We Got Jungle Fever” Bell (ESD, ’97). This was the verse that moved me then and moved me today, as well.

I, the Lord of snow and rain,
I have borne my people’s pain.
I have wept for love of them, They turn away.
I will break their hearts of stone,
Give them hearts for love alone.
I will speak My word to them
Whom shall I send?

Here I am Lord, Is it I, Lord?
I have heard You calling in the night.
I will go Lord, if You lead me.
I will hold Your people in my heart.

Copyright: Dan Schutte


I will go Lord, if You lead me.


The Ostrich

There is a common myth that ostriches, when sensing danger, bury their heads in the sand. It’s one of the first phrases we learn when being taught to take responsibility during difficult times. Stop burying your head in the sand, and just deal with it.

Myth buster – ostriches don’t do that. When they are aware of a predator, they lie down, extend their necks, place their heads flat against the ground, and stay very still. They don’t “hide their heads in the sand” at all.

Mother Nature’s poster child for avoiding the tough talk…doesn’t.

See, nothing in nature can truly avoid life’s challenging moments. Not for long, anyway. The ostrich will always have to lie in wait to see its fate. Just like the rest of us.

Alas we all have to face the music. We have to recognize that conditions have changed forever (sometimes in the blink of an eye) – we have to change accordingly. We have to realize that, what we hoped was a “lifetime friendship” was only meant to be temporary – we must say goodbye. We are forced to look in the mirror and admit “it didn’t go my way” – we go forward with bittersweet, sometimes lonely, steps.

Indeed, most of life’s toughest decisions are not about making the easiest decision, are they? As she often did, the late Dr. Maya Angelou still soothes us with her wisdom, “when you know better, you do better.” Perhaps, it’s brave enough to attempt to make the best decision you can.

And, instead of relying on it, consider it a bonus if your best decision happens to be easy, as well.


(image borrowed from

Last Concert of 2015

I sang my final concert of 2015 last night.

Last night’s concert was  bittersweet. It ends a year of major transition for me, personally, and I believe last weekend began a new transition for us all, globally. This global transition has changed every time I connect to the internet. As Thomas Paine observed centuries ago, “These are the days that try men’s souls.”

As I sat in my dressing room, there was a knock at my door and a dear friend appeared to be with me before the concert. He remarked about the very same things (both)  I previously mentioned and said there was a very interesting “look” happening for me last night.

“It’s as if there is darkness around you, but there is light inside. Chiaroscuro.”

I agree. (Side note – that made me think of The Grant and Durd. Had to completely redo my makeup.)

“See how there is just a small amount of shadow on the wall? That’s manageable. Easy to overcome with your smile.”

A little Swiss man, who would show up to hear me sing if I opened a grocery store, talked to me after the concert and said the same thing. He told me my smile after the last note, which was something I did quite purposely, made him feel like everything would be okay.

Light. We need light. I was given a Texas-size serving at birth.

(Your pictures are below. Thank you for being with me before that concert. You have remained one of my dearest friends throughout some times when the dark and the light weren’t in such great balance.)


There is a great deal of darkness around those of us who are trying to process the current events in a compassionate, concerned, humanitarian way. What do we do? How do we help? Also, how to we protect – ourselves, our children, and our future?

The answer is not to be found in contributing hate speech, bigotry, racism, or darkness. That is unproductive, unnecessary, and inhumane.  As history has shown us, hate feeds on such answers.

Thoughtful, well-educated, serious people sitting together and creating appropriate, targeted, short and  long-term solutions to the problems we face – that is a solution. Marrying prudence with compassion – that is a solution. When force is necessary, tempering such action with a strong eye on the innocents affected by such force and a plan to deal with their future, which we will directly effect. For every child with which I am concerned, there is an aunt/Godmother/LaLa version of me in Syria who is equally concerned with the child she loves.


Farewell to 2015 – what a wonderful year of some beautiful music. Jackson, I believe my favorite moment of the entire year happened at Transfiguration when we performed “Blackbird.”

Nutjobs, nutjobs everywhere

Everyone had an gut reaction to the news about Charlie Hebdo. I thought it was a mistake. It was the same feeling I had when I heard of the plane flying into the World Trade Center. It’s the same feeling I have when I watch Terms of Endearment and Emma dies. “That didn’t really happen, someone made a mistake. Rewind it and listen again.”

Because I live in a parallel universe – things like that don’t actually happen.

These things are horrific (yes, even Emma’s death). Two of them involve evil. My faith in humanity and the goodness of every person makes evil a terrifying topic that I still, to this day, cannot believe is real. My faith is strong and, I promise you, tolerant.

And, I am sick and tired of listening to people tear religion apart. Immediately after the attack on the offices of Charlie Hebdo,  FB posts purported the trite and cliche statement, “I dislike religion.” So, on Saturday, I posted “I think people who say they dislike religion are silly.” It wasn’t the adjective I wanted to use. I wanted to say “ignorant.” Just as you are entitled to tell me you have a blanket dislike of religion, I am entitled to say your words are ignorant. As I asked someone, “how much do you know about Zoroastrianism, for example?” Attended two Bahai ceremonies and just didn’t like the buffet selections? That makes sense.

The same night of this FB exchange, I had dinner with a friend and her husband, who is Pakistani and comes from a Muslim household. Though he is now an atheist, he said, “who am I to say religion is bad or stupid? If someone has cancer and his faith helps him to get out of bed and keep going every day, well, that’s a good thing.” I thought that was one of the most profound things I’ve heard in a discussion about faith. A Catholic Buddhist and a former Muslim now atheist – totally different faith structures, parallel thinking.

And there is parallel thinking with all the terrorists groups. It’s not religion that unites them, it’s a desire, almost a thirst, to commit acts of terrorism. Sure, there are excuses about the men and women who join these terrorist organizations having felt like lepers in their pre-terrorist lives – cast out of society. They felt they didn’t belong and then someone came along and said, “you can have a family with us.” Oh, poor little terrorists didn’t get picked to play Four Square in 4th grade, so let’s kidnap, rape, murder, and humiliate others. How sad. This is age-old, mafioso stuff, but, again, it’s not religion that unites them. It’s a desire to destroy and to kill to attain power – that’s not “religious.” That’s a sickness in the soul.

What is the answer to combat the terrorist groups? Like many, the temptation to limit free speech seems plausible to me, until we remember that free speech really oughten have limitations because then it’s not exactly “free,” is it? Bit like a free ticket to the movies that you can only use to see bile-inducing Twilight movies. Also using violence to combat violence didn’t seem to work out well in most cases (“An eye for an eye will make the world go blind” Gandhi’s pointed that out a bit more eloquently). The truly important thing to remember about eradicating terrorism is…that we cannot.

There will always be nutjobs. Some of them are violent with weapons and some of them are violent with words. These people will always find each other (just look at Congress). I’ve found, there is one solution to this problem that will work. It will work if your life is in danger, it will work if someone you love is killed. It will work when your country is attacked, it will work when your country is attacking.

It goes like this:

Yes, when this flesh and heart shall fail,
And mortal life shall cease;
I shall profess, within the veil,
A life of joy and peace.

It is the hidden verse of Amazing Grace. It says that we have done our best, we were committed to sucking the marrow out of life, and we used our lives to spread principles like tolerance, kindness, and acceptance. We take our lives not for granted, but for the gift that they were at birth and can be until we die. And there are those unique cases, like those who worked in the office at Charlie Hebdo in Paris, whose lives are gifts even after they die.

Amazing Grace – how sweet the sound.

Apples and faith

How very Swiss the sermon was on Christmas eve/day. “Brothers and sisters in Christ, faith is like an apple.”

Father Luzzatto’s sermon was powerful, as is usually the case when someone stands at the pulpit at Franziskanerkirche. Apples and candles adorned our Christmas trees in my loving, liberal, Luzern church.

Ah, the apple. We love our apples here: raw, cinnamon-dusted, on a train, in a car, while walking. We love apples. There are well over 7,000 varieties of apples. Some are sweet and others are almost sour.  Certain “perfect” apples appear absolutely blemish-less, whilst others are picked from a tree and might have not only bruises, but possibly a plump worm hiding within. Apples used to be a sign of wealth. Countries have their own national favorites. It’s easily one of the top 3 most consumed fruits. Even Switzerland’s hero Wilhelm Tell was linked with the apple, which demonstrated his bravery, accuracy, and resilience under pressure (three rather important universal strengths).

But, the apple’s also an apt metaphor for faith.

There’s a small layer of a “shell” protecting it as it grows, matures, and thrives. Once past the fragile, but firm, exterior, one reaches the sought-after flesh. Interestingly enough, the true legacy each apple holds is far from that which is immediately seen or tasted. Buried underneath the peel, past the yummy inside, there it is: the core. We say, “das Kernhaus eines Apfels” in German. The core of each apple has the potential to bring literal life.

Even the proportions are similar. The outer layer is thin, but sturdy. The inner flesh definitely contains the majority of what makes an apple have its well-known taste. The core is similar to the outer layer because it is limited in size (and circumference, by nature).

There we have our proportions (those of us who are faith seekers). Our “faith” or outer armor is not so thick, but it is substantial. The inner stuff makes us who we are. The core (a purity of heart I believe we are all born with) is small, but drives everything from birth to death and then the next step…if it is protected.

Today I did a bit of research. There is a group in Asia trying to create an apple without a peel. Why? Because people don’t like the taste of the peel. “It’s bitter,” they say, “I just want the inside part.” There are hundreds of products created to help us get rid of our apple peel, including one of my favorite products, which is apple juice. We wish it was easier to get directly to and enjoy the delicious flavors of the apple. Who cares about that pesky peel layer, I want the good stuff!

Hell, we all do.

News Flash: the good stuff isn’t in the flesh – it’s in the peel. In particular, that area just between the peel and the flesh. You get a healthy dose of potassium, Vitamins A, C, & K, fiber, not to mention possible cancer-fighting elements and antioxidants. Eat only the flesh? You don’t.

It’s trendy now to eliminate that “armor.” But, when we eliminate the armor of “faith,” we lose a lot.  Not everything, we still get a delicious, wonderful, beautiful apple. But, picture an apple without a peel. How that would really be? It would be exposed to every storm, susceptible to every pest. The peel, the armor – they protect the flesh. Both the outer layer and the inner layer do something extremely important. They both protect the core. The inner layer cannot do it alone, that’s why the outer layer is crucial. Get it?

I struggle to imagine myself with the armor that has protected me. The armor I choose willingly and happily to wear fully aware of what makes it my faith and my armor. No one told me, “put this on just because.” No. I made the decision. Certainly, it would have been a lovely life without some of the doubts and anger that come with wearing the “armor.” The many times I felt my strong faith did not protect me or the ones I loved…or even the ones I saw who needed protection.

The church services on Christmas eve and day ended with everyone taking home an apple for him or herself. I am still thinking about this comparison and loving it more and more. Before we left, Father Luzzatto joked about our favorite apple.

Mine is definitely the Pink Lady apple. I loved them when I lived in Manhattan (my grocer carried them). They are a bit tart, but mainly sweet. The peel is tough, rugged.

Apples and faith. Such a beautiful pairing.


.Apples and ChristmasApple and Advent candles


Obama pulls immigration “Out of the Shadows”

It is 2:17 in the morning on November 21st and the words are spinning.

“These people did not come here in search of a free ride. They came to contribute to America’s success.”

He is right.

Obama said it, they fight “anxiety” “fear” “heartbreak” – to stay in the United States. They live day-to-day actually hoping to remain unseen – to stay in the United States.

So, their desire to be amongst us is so deeply a part of who “these people are” that they will fight daily anxiety, fear, heartbreak, desperation, separation from loved ones and a myriad of other struggles with one goal in mind – to stay in the United States?

I’m sorry, doesn’t that sound like the fierce patriotism that “we” want?

Obama said, “Their hopes, dreams, and patriotism are just like ours.” I think some of these men, women, and children treasure their unseen patriotism more than most, don’t you think?

“I want to pay taxes to support this great country, but I cannot.” Isn’t this the kind of patriot we want?

Now, imagine being a decent, hard-working person (most of the undocumented people in the United States would fit under this umbrella, by the way) and living a life in the shadows where your daily goal is to remain unseen. It’s not ideal for many reasons, but the worst reason is: bad things can happen to a person that is unseen, as President Obama eluded to. When we do not “see” them, we do not know what exactly is happening to them (or their children). This is when serious injustice and inhumane treatment can happen to a person. On our watch.

I think President Obama said “it goes against our character to deport people like this.” What a bold statement and what truth lies within those words.

I’m proud of President Obama and the men and women who helped him announce this plan.

I’m proud to know there is a plan, at long last, that will help “these people.”

I pray the men and women who are charged with fulfilling these promises will be kind in their approach and void of malice, racism, or hatred.

I thank God for all the men, women, and children who were “seen” for the first time tonight.





The Pilgrim and the Politician

A man begins a pilgrimage to Rome in Canterbury, England, and eventually arrives at the Hospice of Grand St. Bernard. As he walks, he carries 88 years of joy, sorrow, and a rather large backpack on his back.

Traveling from Bern to the Hospice of Grand St. Bernard is another man, who is also on a journey. As he makes his way, he carries the arrival of a new baby and the weight of his country’s future on his back.

Pilgrims walk for different reasons. Our pilgrim walked, but he did not know why. He only knew he was called to walk and was uninterested in “why.” Politicians attend events for a myriad of reasons. Our politician attended an event in late June because he knew he should be there. He didn’t pay much attention to “why.” Both men were answering a call.

Nationality separated them. Language separated them. Normal, everyday differences separated them.

Why did Brian walk? Why did Christophe attend that concert?

Perhaps one of the many reasons Brian walked and Christophe attended that concert could be this blog post and the mere fact that you are reading it.

It’s 2014 and we can be jaded and cynical. Most of us see politicians as untouchable and most of us do not pay any attention to pilgrims. A politician would never waste his time talking to a pilgrim and they certainly would not be at the same event because politicians go to fancy places and pilgrims do not.


There are still places in this world that transcend language, nationality, age, religious beliefs, socio-economic differences. There are still places that bring people together for a common purpose, known or yet unknown. There are still places where two men from completely different walks of life can be brought together to share things – ideas, music, Raclette. There are places where the sting of cynicism is made weak.

We have to treasure these places and nourish them. We must feed them with our time, with our resources, and with our very best intentions. We have to look at these places as true sanctuaries because that is what they are.

They are places where the shoes on your feet do not matter. They are places where the color of your hair, your skin, your coat…none of it matters. They are places where a pilgrim and a politician are both seen as exactly what they are:  God’s children – truly equal and worthy of unconditional love and acceptance.

We must give our best to these places and the people walking into them. Both are deserving of our adoration.

I could say many things about the pilgrim and the politician. They are two of the finest men I have met in a very long time. It is not the point. The point is much simpler than that.

There is a place on the border between Switzerland and Italy where a pilgrim and a politician sat together and shared an important life moment.

That place is the Hospice of Grand St. Bernard.

You should go there and give it your best. If you cannot go there, you can still give it your best.

Donate 5 dollars, 10 Euro, 20 CHF, or 100,000£. What is your best? Give that.

Hospice du Gd-St-Bernard – 1946 Bourg-St-Pierre – Suisse
Union de Banque Suisse – 1920 Martigny
IBAN        CH50 0026 4264 6946 8001 X
BIC          UBSWCHZH80A

If we don’t give these places our best, how can this happen?

The Pilgrim and the Politician
The Pilgrim and the Politician



Climb every mountain…or not – One year ago, I went to Grand St. Bernard

Today will be a “good luck getting off the couch day.” Last night, InterNations successfully hosted hundreds of people at a gorgeous venue in the middle of Zürich. As usual, I was smiling and semi-suffering at the door. In spite of the chronic back pain, it’s hard to help myself. See, it’s the people that have sucked me in. I really care about a lot of them. When I ask “How was your week?” I’m listening to that answer.

But, this morning, I woke up and felt the effects of my “care and concern.”  Major back pain lighting my back and neck up like a Christmas tree. Whatever. No biggie.

Then iCalendar and Timehop popped onto my computer screen and reminded me what I was doing 12 months ago: “St. Bernard w-” (I took away his initial).

it was one year ago that I went to the Hospice of Grand St. Bernard for the first time.

That kills me more than the back pain. I was climbing a mountain a year ago and today I can barely carry a purse. I won’t be climbing a mountain any time soon, okay. I get that. So, I can cry about it and feel sorry for myself OR I can smile and pay homage to what made the Hospice of Grand St. Bernard weekend truly exceptional.

Duh. I always do the smiling thing. Here goes.

1) I snowshoe’d for the first time and 2) I climbed a mountain over 2400m for the first time.
(BTWthose things happened simultaneously, which was not easy, AND I did it in 2 1/2 hours.)

3) I visited the Valais for the first time.

4) I drank the addictive Hospice GSB tea for the first time.

5) I kept Canonical hours for the first time.

6) I attended Mass IN FRENCH for the first time.

7) I felt truly at peace for the first time in my life (it was an amazing 2 hours).

8) I had a birthday party with plastic utensils on a wooden floor for the first time.

9) I read “Swiss Watching” for the first time.

10) I stopped a man from having a commitment phobic tirade for the first time because…

11) I told him “I love you” for the first time.

12) I literally saw and heard multiple avalanches for the first time.

13) I took a car ride with complete strangers for the first time.

14) I got frostbite for the first time.

There’s something in both of my books. Emily and Daniel are on a mountain climbing when Emily loses her footing and starts to fall. He tells her to stop, plant her feet, stand up, and move forward.

That was real.

15) I learned how to stop myself from being overcome by fear for the first time.

It was an amazing retreat from this life. I’ll happily revisit it a lot today as I am clutching my heating pad and Ibuprofen.

I was winning today, last year. That means there’s hope to win again.


BRAVERY PROJECT: Guest blogger: Maggie Miller, “She is alive…and I am by her side.”

I have been profoundly moved by the bravery from a family that I met years ago. Please get a box of Kleenex and read Maggie Miller’s story of bravery (yes, you are BRAVE, Maggie).  Pictures will be added as soon as possible. Thanks, Laura Anne  Follow this project @BeforeYouBook #BraveryProjoect


Bravery. It doesn’t come from the inside. I know. I am often described as being “brave,” but never once have I ever felt brave. I have felt terrified. I have felt overwhelmed. I have felt hopeless and lost, but never once have I felt brave.

Bravery is something that is perceived from a distance, a retrospective observation of another person. So many people will tell you of my bravery, even those whose bravery I see. Yet, I cannot feel it. It’s not that I’m distant or egotistical. It is the truth that those who are brave, even those who decide to be brave, are often many things, but brave is not one of them.


I have a daughter, Sarah, whose whole life has been one big brave battle. She is the bravest person I know. She has been poked, prodded, examined, stabbed with needle after needle, held down against her will, fought back, cried and turned around and smiled and laughed. That is brave. I can only imagine the terror in her nightmares. What do you expect when a child’s own mother, the one being an infant is truly dependent on, forces her to swallow medication or stabs her with a needle or holds her down herself to let others do these things? The answer is simple, and oh so painful. The only thing you can expect is terror. Accompanied with the sympathetic nervous system fight and flight response; and of course a whole lot of tears (mostly mine).


But she faced it. She did it and she is amazing. She had no choice. She was forced to be brave. And I held her little body and kissed her little head. And she wears her battle scars, both physical and emotional, a little embarrassed (though she shouldn’t be), but she is alive. And she is well. And I am by her side. The war might be won, but there are still battles to fight. She struggles every single day. I help her when she falls, but mostly just watch her grow; nudging her along this unfair road that is her life, intervening to make her challenges a little lighter. Her courage is astounding. I see her as so much more that I could ever be. I tell her that it’s going to hurt but she has to do it anyway. She does it. Reluctantly, but she does. We bribe the crap out of her.


Being brave is not always the immediate choice when faced with a problem. It usually only appears after you’ve decided to do something, stand up for what you believe, fight for your life, etc. It often comes when the other choice is not something you want to face or accept. Fight the cancer or die. Fight for freedom or be a slave. Bring health care to the masses or have death and disease run rampant. Overthrow the corrupt system or be corrupted. Often eminent death is the deciding factor in becoming brave. In my case, I was never brave; all I did was take care of my baby the best I could. I have fought for her life and I continue to fight for her to live. Children deserve every opportunity to be healthy, educated and happy. There is nothing I wouldn’t do to make sure my children have those opportunities. I only appear brave because I have done the unfathomable. I cared for a sick child when there was little hope, when my own body was exhausted to the point of complete shutdown. I never slept, barely ate (though I easily gained more than 50 pounds). It was the single worst thing I have ever experienced. But it made me realize some things:


  1. I never, ever, EVER want to go through that again. . . But if I had to, I know I need to know what to expect. In the event of relapse we will be inpatient facing a bone marrow transplant and roughly 120+ days in the hospital with one very sick child, another terrified and neglected child (I wouldn’t leave her alone) and a huge emotional void in my spousal relationship, if we can find a match. I don’t look for the worst, but I have to know what could happen so that I will be ready if it happens. I hope we never have to face that monster again and we do so much to avoid it, including eating an organic diet and growing our own food as much as possible.
  2. I will survive if I miss a meal or a night’s rest. I will not just survive, but I will reset my body and be better off for the skip. It will be challenging and emotionally taxing, briefly, but I will survive. I always miss meals and sleep the night/week before a follow-up appointment. I used to miss the night before the testing to determine the current status of the cancer. It’s part of a whole mess of emotional train wrecks just before scans/checks we all call “scanxiety,” and it’s normal. At least in my world.
  3. I learned to live in the moment. We celebrated Sarah’s birth every month while she was in treatment. I had no confirmation that she would be one to live through treatment. I didn’t know how many birthdays she had left. I wanted her to know she was important and to “Celebrate Sarah” every chance I got. She was crowned prom queen alongside a slew of friends who gained their wings and flew away at the age of 2. No one told me I would be the one to be so fortunate to be able to wrap my arms around my baby and tell her I love her every day or so for the past 8 years. And my heart breaks for each and every parent who cannot. For every single child lost, through cancer or otherwise, because. . . No parent should EVER have to bury their child. One of my favorite quotes applies here: “Dance as though no one is watching, love as though you’ve never been hurt, sing as though no one can hear, live as though heaven is on earth,” (Souza) EVERYDAY, because you don’t get a second chance to live today.
  4. There are always going to be obstacles. There is no such thing as smooth sailing. . . At least not for long. Sarah faced a tiger in the ring of the coliseum and won her battle, but she didn’t come out unscathed. She has physical scars, cognitive scars and emotional scars from her battle. Some we don’t even know exist yet, I’m sure. Every child we know who has endured chemotherapy has cognitive dysfunction of one type or another, Sarah is no exception. She has physical limitations, though with some hard work we should be able to minimize these. She has emotional struggles that may never go away. She certainly will develop more problems as she grows. Statistically, 90% of children who have received one chemotherapy drug in particular eventually develop a cardiac concern which will require surgical intervention. I hope she is in the 10%, but I need to be prepared (see #1). We will face these battles just like the others as they present themselves. In the meantime see #3.
  5. It is OK to feel. It is ok to be upset, or happy, or angry, or embarrassed, or excited, so long as you are not negatively impacting other individuals. Let me explain: It’s not ok to hurt someone else, but it is ok if they empathize with you. If you are sad and crying and another person feels bad because you feel bad, they are human and are allowed.   There were moments when I was so lost in the flood of emotions I couldn’t see beyond my own bubble (I unconsciously attempted to protect myself by limiting my perception to a short distance effectively rendering me clueless as to the world around me). You have no idea how big emotions can be until you experience it first hand, like tidal waves of emotion, amplified immensely. And the emotions were all filled with enormous guilt. A moment of joy was often accompanied with the thought of the family journeying home for the final time to say good bye to their child while you were celebrating the end of a chemo cycle or finally getting out of the hospital. A moment of sadness was accompanied by the same guilt that you should be glad for what you have. These slishy, sloshy emotions are best dealt with one at a time, allowed to wash over you and to dissipate. Once I began allowing myself to feel my emotions, I gained a much better control over them.
  6. Kids are amazingly resilient. And they bounce. My Sarah was so mad at me (steroids as part of treatment) that I wouldn’t play the movie, she jumped out of bed as I was attempting to get it into the player and push play. She landed on her head and scared the devil out of me. . . And her nurse. . . And the fellows on for the night. . . And probably half the hospital staff. She bounced and got herself a CT scan in the middle of the night which was negative. She was so sick that first year I had day terrors of her death. The month of October 2007 we spent a total of 4—24 hour periods NOT in the hospital (inpatient or clinic appointments). I was terrified and she always smiled.
  7. And those who work with sick kids are not human, they are angels. I cannot thank them enough for all they put up with and did for me in addition to caring for my baby. Each and every one of them, from the front desk staff checking kids in to the cleaning crew to the nurses and doctors, has something different inside that is so admirable.