Archive for January, 2014

om·pha·lo·cele noun \äm-ˈfal-ə-ˌsēl –  a rare birth defect that occurs in 1 in 4,000 —7,000 live births. It is a type of abdominal wall defect in which the bowel, liver and other abdominal organs protrude out of the abdomen and into the base of the umbilical cord. 

Until seven years ago, I never had heard the word, omphalocele.  It first entered my vocabulary when our newlywed son and daughter-in-law, Dan and Crystal, announced that they were expecting their first child.  At twenty weeks, they headed out for the traditional ultrasound study, eager to learn whether their baby would be a boy or a girl.  They learned much more than that on that day, and left without asking the gender of their baby.  Instead they learned that its organs were growing in a sac outside its body, and that further studies needed to be done.

Four weeks later, another ultrasound was done — this one by a specialist at a hospital sixty miles away.  They learned that they were having a daughter and that for her this omphalocele was one of a number of differences that make up a condition known as OEIS.  Their baby would face many challenges due to these birth defects, and her parents began a wild ride that now has become their “normal.”  Those of us who are mere mortals marvel all the time at the grace, the evenness, and the love with which these two young people have navigated the hospitals, the insurance, the medical supply companies, and the misunderstanding of their daughter’s needs for nearly seven years.

But most of all, we marvel at the way that their daughter, the amazing Cheyenne, has grown into such a sweet, kind, loving, smart, well-adjusted, and happy child.

 

Omphalocele Awareness Day should serve to dispel some of the fear, the misconceptions, and the curiosity people have about these special children; but most of all, it should serve to remind them that these are children, not medical cases or anomalies or oddities.  Children – who laugh and cry, who play and pretend, who plan and dream, just like all children do.  And, like all children, they need friends who love and accept them — not in spite of what they are, but because of who they are.

The definition of omphalocele is quite clinical, very cut-and-dried; but omphalocele means so much more than those few words can express.

  • It means that instead of traveling five miles to the local hospital, Cheyenne would be delivered in Philadelphia and immediately taken to the NICU at Children’s Hospital.
  • It means that for the last weeks of her pregnancy, Crystal had to stay miles from home in a Ronald McDonald House so that premature labor would not create an emergency.
  • It means that the instant Cheyenne was born, she was whisked away inside a sterile plastic bag that kept germs at bay until surgery could be performed to protect her intestines.
  • It means that cuddling and cooing had to wait until the doctors worked their magic.
  • It means that her early days would be spent far from home in the Neo-natal Unit.
  • It means that when other children catch “the bug,” Cheyenne often ends up in the emergency room.
  • It means that more than a dozen surgeries have been required so far to ensure her health.
  • It means that her younger sister (and now her brother) has spent a whole lot of time in waiting rooms, doctor’s offices, and hospital rooms in order to be with their family.
  • It means that at age 6 1/2, Cheyenne has a better understanding of her life than most of the adults around her
  • And it means that Cheyenne has become a WARRIOR – An “O” Warrior.

Most of us think of a warrior as someone who wins a battle; but the true warrior is not defined by winning — she is defined by persevering, by fighting the uphill battle, and by never giving up.  Battling becomes a way of life, not a sometimes event; and the warrior does not let the battle become all that there is in her life.

Being a warrior means dealing with the battle and then going to the playground or playing dress-up or singing in the choir, or rollerblading.  It means taking care of herself every day so that she is ready for the battle and ready for the normal fun that is the life she dreams of living.

As the grandmother of a warrior, I can tell you this:  There is not a member of our family who has not been infected with the warrior gene that Cheyenne has brought our way.  There is not one of us who has not been changed by loving this incredible, funny, sweet, happy, and amazing little girl.  She is the ultimate “O” Warrior, but we all have become warriors as we have learned from Cheyenne.  She has taught us, with her very normal exterior, never to forget that each person we meet might be facing a struggle that does not show on the surface of their life.  She reminds us daily to be kind and compassionate; because truly, a warrior does not show on the surface the battle she fights, and we may not always realize that we are in the company of warriors.

Constant kindness can accomplish much. As the sun makes ice melt, kindness causes misunderstanding, mistrust, and hostility to evaporate.
   — Albert Schweitzer

We are having a heat wave in Pennsylvania today.  The sun is shining brightly, and the thermometer registers a balmy 19 degrees!  After many days of single-digit temperatures and wind chills below zero, the return of the sun and double digits makes me feel warm and happy.  I think of other winters when today’s temperature was one of the coldest, and I realize how much of our attitude toward life is based on contrasts and perceptions that we really don’t even consider.  We respond to nineteen degrees far differently when we have experienced zero than when our norm is in the high thirties.

As the sun streams through my window this morning and creates a spot on the rug where the dog has decided to warm himself, I am enjoying the feeling that winter is melting away – if only for a moment.  I can’t say that I am loving winter this year.  It has been harsh and cold and not treating me very nicely.  It has stung my face and frozen my fingers and forced me to pile on many layers to protect myself from its cold treatment.  I have tried to love winter; but the best I have done so far is to be grateful for its reprieve on this still-cold morning.  And so, today, I pass some kind thoughts about winter through my mind.

I think today about the people who bring cold chills to my otherwise warm existence.  When I am around them, I sometimes find myself layering on protection like justification, judgment, wariness, and anger – just to keep out the cold.  I try to love them, but often I fail; and in the dance we do of cold and harshness and putting on layers, we both lose and both remain chilled when we are together.  Perhaps there are times when the best we can do is something less than love.  Perhaps that something is kindness.  Can we find ways today to peel back the layers just long enough to send some kindness toward someone who makes us shiver?  Can we blaze a trail of kindness that one day might be paved so that love can make its way through the mistrust and misunderstanding?

When my children were small and arguing with one another, I would tell them, “you don’t have to like him, but you do have to be nice.”  Perhaps the adult version of that advice is, “When you cannot love, at least be kind.”  Maybe by practicing kindness we learn to love, even when we are feeling cold and distant and even when our layers are thick.

“I have found that if you love life, life will love you back.”
     — Arthur Rubinstein

It may sound simple, but many truths are just that — simple, but profound.

What kind of day will you have today?

Will you struggle against life, or will you open your arms and embrace it?

If you love life, life will love you back.

Loving life is not always an easy thing to do.  Just like people do, life can sometimes challenge our love.  It is easy to love the person who agrees with us, who has loved us first, who has the same values, who makes the same choices, who has our best interest at heart.  It is more challenging to love the person who disagrees, who stands at a distance, who has offended us, or who does not love us back.  Loving life has similar challenges, but the rewards for loving are great.  Choose to love life today and sooner or later you will see that life has loved you back.

If you encounter nothing but smooth sailing, you will overflow with joy.

If you face adversity, you will learn how strong you are.

If you encounter hatred, you will see how powerful love can be.

If you encounter sorrow, you will see how love can make your heart strong.

If you meet with fear, you will see how love can give you courage.

Life is filled with infinite experiences, challenges, sorrows, and joys.  We can struggle against them, or we can open our arms wide and embrace it all.  When we take in life and embrace it whole-heartedly, we discover the simple truth that life will love us back.

“I can’t go back to yesterday – because I was a different person then”
     — Lewis Carroll

“If I had my life to live over again…”  How many statements filled with regret have we made that begin with those words?  Now that I am practically perfect, there are many events in my earlier life that I know I could manage better with the perspective I have gained through years of living.

Then I stop and think of all the places I’ve been and all the life lessons I’ve learned, and I realize that some of those things I’d like to change are exactly the things that have brought me to today.  I thought of the butterflies that grace my garden each summer and how effortlessly they fly from flower to flower.  Then I thought of how ridiculous they would look trying to blend in with the broccoli shoots and munch on the leaves.  Without those leaves, they could not have reached the place where they spun a cocoon and were transformed.

IMG_7557

Not unlike my elegant, winged friends, each of us spends our time being fed, growing strong, and when the time is right, being transformed.  Every bite we take out of life, every morsel of experience we tuck away, is an integral part of who we will become.  We need it all, even the parts that later make us wistfully say, “if I had my life to live over again.”

We cannot go back and redo what is done, because we no longer are the people we were when we were munching away at life.  Instead, we should take a lesson from the butterfly and stop crawling, spread our wings, and fly.

 

“Thousands of candles can be lit from a single candle, and the life of the candle will not be shortened. Happiness never decreases by being shared.”
   — Buddha

It costs nothing to share happiness with others.

Isn’t it funny that we have no problem calling a friend when we are sad or lonely or in need of reassurance, but we hesitate to begin with happiness and simply say, “I’m having a great day today and wanted to call and say hello.”

I have very little time to type here today, so I’ll be brief.  If you are having a rough time, be sure to call a friend — that’s part of what we do for one another.  If you know a friend who is having some struggles, and you are having a good day, pick up the phone and give them a ring — maybe you can be a listening ear and make a difference.  But let’s add one more scenario to the life equation:

If you are feeling on top of the world and blessed with abundance and experiencing joy, call a friend who feels the same way and watch your candles burn together and create a bonfire.  It will fill you up, make you grateful, and undoubtedly warm people all around you.

It costs nothing to share happiness.  When it touches sorrow, the sorrow is diminished; and when it touches other happiness all the good things are multiplied.

“There are two ways of spreading light: to be the candle or the mirror that reflects it.”
     — Edith Wharton

It is winter.  The days are short, the clouds are plentiful, and the world certainly needs some light.

As I sit here, recovering from a sinus infection, my energy just a bit low, I am reminded that no matter how we might wish we could light the whole world, there are limits to how much one person can do when she does it alone.

Sometimes we are the candle; and our light and love and energy just overflow, touching everything and everyone around us.  Sometimes our personal flame burns low — and sometimes that is our norm, especially when we take on a lifestyle that demands a huge amount of energy, tolerance, and love.  It is good to know just how brightly our candle is burning each day so that we do not take on more lightbearing responsibility than we are able to deliver.

Sometimes we are the mirror.  I’ve always thought of this as a sort of sun and moon relationship, where the sun contributes all of the light and the moon just sits there passively and waits for the sun to light it up.  As I thought of being the mirror today, I realized that the mirror has many opportunities to deliver light to the dark corners.

It is not a cut and dried, cause and effect, one-on-one relationship like the sun and the moon that gives the mirror purpose.  Sometimes, especially when the mirror feels low on energy, people with the energy to be the candle make frequent visits and bring their light with them.  It is not important for the mirror to take in enough light right now to assume the role of the candle.  What is important, as the mirror collects the light of a thousand candles, is that the mirror remembers to let that light bounce in all directions and to be the delivery system that spreads good things to the world.

Last year at this time, I had asked a whole bunch of people to join in a card shower for my dad’s 91st birthday.  I wanted to do something special for what turned out to be his last birthday celebration; and I simply did not have enough energy to do it on my own.  A whole bunch of candles joined in and sent their love, their encouragement, and their stories of how we became friends to my dad.  I was only the mirror that captured their light and reflected it in another direction; but when the event was over, Dad’s own candle burned brighter — and so did mine.

I think about this today, because a good friend (you know who you are) is planning a similar birthday milestone celebration for someone she loves dearly.  I can see, more clearly that I admit in myself, how hard this woman works every single day to bring love, light, compassion, and energy to her family.  I can’t imagine how she could conjure up enough celebration in the dark days of winter to satisfy her desire to celebrate the life of someone she loves.  Instead, she has given many of us the opportunity to send a bit of light and a lot of celebration to her sister.

And I know that my friend, the mirror in this celebration, will capture the light that arrives with each card and send it bouncing all over the room.

Thank you, my friend, for reminding me that being a mirror is not less than being a candle.  Sometimes it makes us just radiant.

“A blessed thing it is for any man or woman to have a friend, one human soul whom we can trust utterly, who knows the best and worst of us, and who loves us in spite of all our faults.”
     — Charles Kingsley

There is a video circulating in social media circles.  I think it’s actually an ad for Google, and it shows the story of an adult granddaughter facilitating a reunion between her grandfather and his childhood best friend.  She searches the ‘net and narrows down the location of the missing man and picks him up at the airport just in time to wish her grandfather a happy birthday.

I have to admit it made me cry; and it also made me think of the friendships that have graced my life.  Before the day is over, I’ll be doing some web-searching myself and hoping to say hello to someone who’s missing in action from my past.  Then I found this snapshot from my own childhood:

Dress-up

It portrays a time of innocence when friends came together to dress in their mothers’ clothing and pretend that they were all grown up.  It portrays a time of simplicity when we needed no excuse to knock on someone’s door and simply say, “do you want to play?”  Our lives were simple and straightforward and sometimes ruthless when it came to friendships.

“Well, you are my friend, but  you can’t be my best friend because Linda is.”

If only we had known back then how many “best” friends we might have in a lifetime, we would have had a dozen of them, all at once.  Some friends in this picture are people I still see.  One is my sister, as friends sometimes are.  Another moved several years after this photo was taken, and I haven’t seen her since.

The one thing that all the best friends in my life so far have in common is that they love me — not for being who they need me to be, but just for being who I am.  That’s what it’s all about; and I hope when they think of me, they say something similar.

So pull out some old photos, put on your fanciest thinking cap, and take some time today to reflect on your friends — the old, the new, and the ones you still have to meet.  Then send a note or an email, or pick up the phone and simply say, “hey…do you want to play?”  No reasons or excuses needed.  That’s how it is with friends.

 

“Sorrow is knowledge, those that know the most must mourn the deepest, the tree of knowledge is not the tree of life.”
     –Lord Byron

This morning’s email brought two requests for assistance from parents who suddenly found themselves needing to bury a child.  I sit here and try to remember a time when I passed such thoughts lightly through my inexperience, thought “that’s awful,” and quickly returned to my day.  The truth is that I cannot find that lighthearted view of the world any more; because no matter how happy I am or how joyfully I greet each day, I carry with me the knowledge born of the sorrow of losing a child.  As impossible as it is for me to find the time before that knowledge entered my world, it is also impossible for my heart to stay inside my chest and not leap out to join the hearts of people who inhabit the space where I once lived.  I no longer live in that space, and for that I am thankful; but each time I hear of another person being called to reside there, I answer the invitation to stop by for a visit.

Each day we are called to gather around the Tree of Life and celebrate the moments that are given to us for living.  Each time we experience some sort of sorrow in our lives, our knowledge grows and affects the way we choose to live.  There are times when I truly wish that I could un-know some of the things that have entered my life.  I wish that I could return to the innocence that told me to trust that all of life was smooth and happy and filled with joy; but such wishes are momentary, and I push them away as soon as they enter my mind.  The truth is that although the Tree of Knowledge may not be the Tree of Life, it is those sorrowful experiences that teach us to revere living and to approach each new day with the sort of reverence and awe that it deserves.

I cannot go back to the time when sorrow had not taught me about this part of living.  I cannot unlearn what it is to mourn.  What I can do, as I pause and wonder why someone else should have to mourn today or suffer today or die today, is to celebrate all the days when sorrow has not been a part of the moments given to me.  I can go and visit sorrow again and still live in joy.  The Tree of Knowledge has fed me with its bitter fruit from time to time, but it only makes the Tree of Life seem sweeter.

“When it becomes clear that no one else shares your level of passion, you are where you belong.”
     — Placido Domingo

Have you ever pursued a passion in the company of other people and then suddenly found yourself alone?

This can be a disturbing feeling, especially if the people whose company we have shared have fed our excitement, been part of our learning curve, and encouraged us along the way.  How does it feel when the next step suddenly is one that only we are willing to take?  What do we do when we arrive at a fork in the road and realize that our companions are choosing one way and we are choosing the other?

Often, we question our decision to go a separate way.  We judge our judgment and maybe feel a bit insecure as we realize that we are choosing differently for the people who have been our companions, our supporters, our fellow travelers.  When we reach that fork that offers us a choice that only we decide to take, do we second-guess our decision and follow the group, or do we look into the distance, say our goodbyes, and move on?

Each of us is born to walk a path through life.  Even when we arrive at the same destination as another person, we may need to reach that place by learning different things in different places and circumstances.  When our path intersects with that of others for a time, we may become comfortable that we have reached an endpoint and have found the people who share our passion.  We celebrate our shared interests and ideals, we enjoy each other’s company, we give and take from our common experiences, and we treasure the people who walk our same path.  Then it happens.  One day we share a passion that has grown from our time together and realize that our friends and fellow travelers have arrived at a different position on the road through life.  It can be hard to take the first step on a different fork in the road; but we know that our purpose lies in a different direction.  We know that it is time to say goodbye, with love, to those who have fed us and been fed by us for a time, and we trust that there will be new travelers to be met on the new road.

If we are very lucky, we will know when it is time to strike out on our own.  We will hold onto all the good we have experienced in our travels so far, and we will carry the love we have known as we move on toward the place we belong.  We figure out that we are never really alone and that we never really leave people behind who have been part of the learning we have shared.

Whatever you do, when you discover that others no longer share your passion, trust that you are on the right path.  We journey together, but each of us walks alone.

“It is health that is real wealth and not pieces of gold and silver.”
     — Mahatma Gandhi

Since mid-December, we have been living in constant skirmishes with germs.  There have been viruses and bacteria, workplace germs and school germs.  There have been old folk’s germs and adorable little kid germs that innocently try to make you believe that no matter how that sweet little nose is leaking or that cute little cough is spraying, you are safe.  After all, how could something so adorable be involved in undercover work for the other side?  When those adorable little people come around for Christmas, we forget entirely the most important truth about health — that kid germs are the worst germs there are.

It has been a while since my immune system has failed to withstand the assaults of all the germ-bearing people who love to share; but today I have had to admit that I’ve lost the battle against the sinus squad and am down for the count.

I think it’s good to experience a little infection from time to time.  It is no fun to be sick, but it does a great job of reminding me how wonderful it is to be healthy.  I think of all the things I try to do each day to promote my own well-being, and today I will do them with greater attention.  I will drink water — gallons of it.  I will rest and maybe even nap, because we all know the value of a good night’s sleep.  I will eat well, although I can’t say that anything tastes particularly good at the moment.  Most of all, I will carry the image in my mind that I am a healthy person who has lost one small skirmish and already is back on the road to good health.  I will remember, when I feel better, to pay attention to my hydration, my nutrition, and to getting enough rest to maintain my body.

There is nothing like a sick day to remind us of the blessings of good health.  Today I will think only of the things that sustain me.  I will be thankful for clean water, for nutritious food, and for a soft warm bed.  ‘You may have won the battle,’ I will think as I make my way back to full speed, ‘ but you have not won the war, germ!’  And now I will retreat for a bit and sleep the enemy away.