Gaudete!

I Heard the Bells on Christmas Day
Their old familiar carols play,
And wild and sweet the words repeat
Of peace on earth, good will to men.

Sunday was Gaudete Sunday!  Rejoice!  It is almost time!  Rose, not purple.   We get a brief reprieve from our preparations to focus on the joy of the season.  

I thought how, as the day had come,
The belfries of all Christendom
Had rolled along the unbroken song
Of peace on earth, good will to men.

As predictable as the sunrise, Christian men and women cannot contain our joyful excitement.  There are pageants and nativity displays.  We sing carols.  Everywhere, people are smiling, even at strangers.  Charities get more donations.  Everyone is focused on giving.  What will I give?  Who will I give to?  

And in despair I bowed my head:
"There is no peace on earth," I said,
"For hate is strong and mocks the song
Of peace on earth, good will to men."

Then the spell of the season is broken.  There is a display in Times Square,  New York depicting Santa, with the caption, "Embrace the Merry." Charming, right?  But the bottom of the same billboard depicts Jesus on the Cross and is captioned, "Dump the myth."   

Last year my town was the focus of a national battle over Christmas displays.  The short story is that the county courthouse has traditionally displayed a nativity scene and a Menorah.  Some few got mad and voiced the concern.  The county decided that to avoid an appearance of government sponsored religion, anyone who wanted could put up a display on the courthouse grounds.  Ten displays at a time and permits would be considered in the order the were received.  Last year there were a few different nativities displayed.  Some stunningly beautiful, some amusing.  (Star Wars Christmas?)  There was also a skeleton dressed in a Santa suit.  He was crucified.  I had to explain that particular obscenity to my then three year old daughter.  

Most painfully poignant this year, just a few days before Gaudete Sunday, there was a heartbreaking tragedy in Newtown, CT.  Such astounding, incomprehensible violence has the whole country talking.  We want to make sense of it.  We have to understand it.  We want to talk about guns and mental illness.  We want to find someone to blame.  We want to pin our rage.  We want to find a way to keep the sorrow from consuming us.  Holy Mary, Mother of Sorrows, pray for us.  

Where is God?

Then pealed the bells more loud and deep:
"God is not dead, nor doth he sleep;
The wrong shall fail, the right prevail,
With peace on earth, good will to men."

This time of year it is easy to get wrapped up in the cute baby and our magical story.  Christ was born!  God humbled Himself to be born a man, and not a rich man but the son of a poor man.  The rich gifts He received from the kings must have seemed almost comical, juxtaposed with his humble surrounding.  Shepherds and Angels, mundane and celestial, worshiping and rejoicing together.  

In our preparation for the holiday celebrating that glorious event, we remember God's people waiting for the Messiah to come, just as we wait for His second coming.  The King of Kings will come again in glory.  "He will wipe every tear from their eyes, and there shall be no more death or mourning, wailing or pain, for the old order has passed away.” Revelation 21:4 

When Our Lord came as man, He entered into our experience of a fallen world, His perfect creation, scarred by sin and death.  He experienced suffering and loss.  He watched people He loved die, including His father, Joseph.  He saw sickness and pain and abuse.  But in His death, He claimed triumph for life, forever.  And even now we can look forward, joyfully, to the coming of our King. When He comes again, our broken hearts will be healed. Rejoice even now; life triumphs over death. Gaudete!

Till, ringing singing, on its way,
The world revolved from night to day,
A voice, a chime, a chant sublime,
Of peace on earth, good will to men!

Month and months and months...

Sarah is amazing.  In the day to day course of life a lot of amazing things slip by.  Every once and awhile it is nice to be astounded, not by the newness but by the surprising sameness.

Every morning and evening there is a light show.  Sometimes it is spectacular.  Sometimes it is soft and gentle.  It is never boring.  How often are we paying attention?  Every flower is intricately patterned.  Every child is extraordinary; a moment to moment series of incredible adventures.  Every relationship is unique.  We experience, but rarely dwell on, the fascinating reality of communication, not just with each other and our surroundings, but with our Creator, if we so choose.

I was watching my own little miracle today.  Sarah was babbling away to her sister.  "La-la-la-la-la-ya-ya-ya-ya"  (Lily!)  I was astounded.  How far she has come!  How well she is doing!  How cheerful she is, even though she is sick!

And yes.  She is sick.  Again.  It is cold season, and Sarah has a cold.  Nothing too awful, just the kind of nasty bug that makes you feel miserable and tired.  Coughing and not sleeping.

I should write more often.  As I am writing, my fears are losing their grip on my sanity.  Which is good, because I was beginning to lose my grip in the tug-of-war.

In the past few months, Sarah has been to the hospital a number of times for unplanned stays.  We took her to the the ER because she was having trouble breathing.  As when she was three months old, it went from bad cold to terrifying-middle-of-the-night-event altogether to quickly.  We were pretty sure it was RSV revisiting.  The ER staff remembered us.  Two familiar doctors, many familiar nurse and techs.  It is difficult to get an IV in, because her veins "roll."  Mine do too.  That is one gene I will try to keep to myself in the future.  In any event, they remembered the difficulty, and sent for the best guy they have to get the IV in.  We knew him too.  I have mixed feelings about familiarity in the ER.

She was diagnosed with pneumonia.  Right lower lung.  The doctor in charge compared the x-rays to the images from her last stay- some months earlier.  Pneumonia.  Right lower lung.  In fact, it looked just the same.

When pneumonia is diagnosed by x-ray, what they are looking at is shadows.  Lines are fuzzy where they ought to be clear.  If you get pneumonia more than once, the x-ray should look different.  It is a different infection.  So the doctor wants us to follow up with pulmonology to discover if indeed it is pneumonia, or if it is something else.  She suspects some chronic underlying issue.

We were educated about asthma.  It not a diagnosis they are giving yet, but one they think we should be prepared for.

We will follow up with pulmonology, but we have not yet.  Since that discovery, we have been back to ER with breathing issues.  It was right before Sandy hit.  She had a bad cold getting worse, and I was worried that the power would go out and she would need a nebulizer treatment.  Her breathing was getting worse, the wind was picking up and I was nervous.  After two back to back neb treatments, I called her doctor expecting to be put back on oral steroids (she had not finished the course of antibiotics from her last pneumonia yet.)  The doctor told me in no uncertain terms to take her to the ER.  I was much more surprised than I should have been, given everything.  We got a pneumonia diagnosis and different antibiotics. We were only in the ER for a few hours, but the trip was not useless since I came home with an adapted inhaler, in case the power went out and she needed her breathing treatment.

This is a longish history to arrive at today.

Sarah was scheduled to get a surgery on December third.  It is a surgery we have scheduled and rescheduled.  First it was delayed because she needed a shunt in the late summer, then it was cancelled because she was sick in October. It is actually three surgeries rolled into one, so it is hard to schedule since we need three surgeons.  It is a developmentally important surgery which was supposed to happen before she turned one- in September.  She will have the first of three hand surgeries to give separate her fingers- this one would give her a thumb and pinky!  She will have tubes placed in her ears to drain some fluid which is causing some hearing loss.  She will have her cleft palate repaired.  This is such a big deal developmentally!  Hands!  Hearing!  Speech!  Eating!

Sarah is sick.  The surgery was cancelled today.  Is it OK to admit I am discouraged?  I am discouraged.

"May the God of hope fill you with all joy and peace in believing, so that you may abound in hope by the power of the holy Spirit."  Romans 15:13

Sarah is sick.  But she is cheerful during the day.  She is chatty, playful and a pleasure to watch.  This morning I woke late to find Sarah (brought into my bed in the early morning) snuggling with her older sister who sneaked in quietly.  Lily had brought in a pile of baby books, and she was reading them to Sarah.  These are my amazing, brave little girls.

Advent begins on Sunday.  Advent is the time of preparation for Christmas.  It is a time to contemplate the coming of our Lord, and to prepare for his second coming.  Waiting and preparing.  It is also the beginning of the new liturgical year.  It is a great time to renew.  How better to prepare for our Lord than to newly commit to Him.

Come, long-expected Jesus. Excite in me the joy and love and peace it is right to bring to the manger of my Lord. Raise in me, too, sober reverence for the God who acted there, hearty gratitude for the life begun there, and spirited resolution to serve the Father and Son.

I would love to pretend that I have been so busy that I have not had time to write.  It is not true.  It has been a delightful summer thus far.

We did take that vacation that I was concerned we would have to cancel.  It was shortened, but only by a few days.  We spent a few wonderful days in the mountains in New Hampshire and a few wonderful days on Cape Cod.  Sarah loved the damp, cool, mountain air.  Lily loved "Aunt Louise's beach" because "it has better water than the other beach."  Lily does not like big waves.  We caught newts, splashed in a spring, picked flowers, read books, rode on a ferry, hunted for beautiful seashells, went to an aquarium, rode on a carousel, ate well and slept in almost every day.  I should figure out how to add pictures.

And at home we have survived DC heat as well as anyone else.  Our air conditioner works well and we have access to a pool.  We cannot complain.  Sarah does not like the heat.  Lily does not like to be cooped up inside.  Sympathetic plights both.  I do the best I can to accommodate them.

Lily turned four.  (!!)  She is such a cool kid.  In honor of her birthday, which I missed in blog, a few Lilyism:

Stopping at a red light
Lily: Why did you stop?
Mom: There is a red light.
Lily: No it isn't.  I can't see it.
Mom: Just because you cannot see something does not mean it isn't there.
Lily: Yes it does.  Of it does.
Mom:  Are you a philosopher?
Lily: No.  You are.
Mom: Are you a sophist?
Lily: No.  You are.
Mom: I cannot be both!
Lily: You are.  And a Kangaroo like me.

Driving on the toll road, under large platforms suspended from long poles.  (Scanners, I think, looking for your EZ Pass.)  "Mom, where are the giants who play on those big swings?"

On late night cookies:
Lily: Can I have some cookies?
Mom:  No, it is past bedtime.
Lily: Argh, Matey! But I am a pirate!  And pirates have cookies past bedtime!  Argh!

I walked into the living room to discover my daughter staring in apparent wonder out the window.
Mom:  What are you looking at?
Lily:  I am just looking at the world.
A beautiful quiet moment passes.  Then,
Lily: I wonder what is going on out there.  Can you turn on the news so we can find out?
Obedience and curiosity.  A brief moment of news-watching, then,
Lily: Oh.  Well now I know.  Can you switch it to Dora?
I was played!

Amusing child.  I do not lose all the arguments.  Honest.

Forgive me reader, for I have sinned.  It has been many weeks since my last posting.  Since then I have done many things worth exploring.

Writing does kind of feel like confession.  I love writing, but in the moments or hours leading up to it there is an inexplicably debilitating terror which dissipates rapidly as I get into it.  I generally learn something about myself and I feel better when I am through.  I think of it as an obligation, but really it is for me.

With that thought in mind, I read through a bit of my blog.  I should probably do that more often.

I do not spend most days dodging chaotic uproar or facing painful or difficult decisions, as the blog seems to suggest.  I am not heroically happy, as was once suggested to me.  I am completely un-heroic, and not always happy.

The deception is accidental.  I use my writing to work through difficulties.  I use it to find hope and joy and courage when I need it.  I use it to beg for prayer.  It does not occur to me to write when life is predictable, or even when it is unpredictably awesome.  I do not think to use it to count my blessings.  I do not often think to count blessings.

Tonight I will.  Tonight, a deliciously, delightfully mundane list:
 
1.  My girls are happy, healthy and asleep.
2.  The air conditioner works.
3.  That quinnoa recipe was amazing.
4.  The lawn is mowed.
5.  We have more tomatoes than we can eat.
6.  Beer.
7.  Enough milk stored for Sarah that I do not feel guilty consuming grown up beverages.

I could go on, but one of tonight's blessings is that I have no further obligations tonight.  Seize the hour!  I am going to bed.

Sarah is scheduled to get a helmet on Thursday.  After a few weeks of complicated logistics, we were very excited to finally get that date nailed down.  The sooner it is done, the more good it can do.


Last week some of the hardware from Sarah's most recent surgery had come loose.  We saw a few little pointy bits poking out from her head.  So, we called her plastic surgeon and her neurosurgeon.  


On Friday she saw her plastic surgeon.  From his perspective, she is good to go.  


The neurosurgeon was concerned about pressure.  The neurosurgeon has always been concerned about pressure.  Between her larger than average brain and extra fluid, there has always been a question of how much pressure there is, and how much is too much.  He ordered regular CT scans to monitor changes, but especially pressure.  Today we heard what we have been hoping for months not to hear: Sarah needs a shunt.  


It is not the end of the world.  It is just another thing with another set of complications and issues.  


A shunt is a tube that drains excess fluid.  It drains out of her head and into somewhere else in the body.  The internal design protects Sarah from infection.  It is relatively simple.  There are complications. They fail pretty often.  I forget the exact numbers, but something like a quarter of them fail in the first year, and a quarter of the remaining fail in the second year.  A new set of complications and issues.  


This also means that the helmet is off the table, at least for now.  I do not know whether we will revisit the idea later.  The older she gets, the less good a helmet can do.  I am very disappointed.  Obviously, protecting her brain trumps other concerns, even when the other concerns are too many surgeries.  It is hard to argue.

I was at a family party over the weekend and granddad looked at Sarah and asked if her forehead was tighter.  I did not even hesitate before saying no.  As it turns out, he was right.  Her head circumference has grown between three and four centimeters in the past three weeks.  That is pretty dramatic.  Not dramatic enough for someone who looks at her every day, apparently.

The screws could also be a clue that there is too much pressure.  It is possible that they were displaced by the internal pressure.  One of the plates is pushing out as well.   (Doctor said he had never seen that before.  Do you want to talk about things a Momma can tire of hearing?)

The CT showed less room and thinner bone.  Both red flags.

He said that a few months ago her had two or three reasons to get a shunt, and seven or eight reasons not to,  and the opposite is true now.

Instead of a helmet, this Thursday Sarah will get a shunt.

For months and months, Josh and I have been afraid to schedule anything in the future more distant than a week.  The summer looked wide open though.  Sarah was not supposed to have another surgery until the fall.  So, we went ahead and scheduled a trip.  It had been confirmed about forty-eight hours before we got the news that Sarah needs a shunt and she needs it now.  We are optimistically refusing to cancel, even though it was supposed to start this Saturday.

Things like this are discouraging.  We were discouraged.

Last night we lay in bed chatting with little Sarah.  Her huge eyes looking brightly up at us.  She was not tired, though it was very, very late.  She is a pretty quiet baby and she was quietly listening to us worry and try to sort out practical details.  (Where do we take Lily?  Should Josh take off work?  What about the vacation days?  Who should stay with Sarah in the hospital?)  Sarah listened.  Then she spoke.

"Da da."

We cheered and smiled and laughed and wondered if it was a fluke baby babble.  Sarah put her hand on her forehead and signed, as she spoke again.

"Hi Da da."

She closed her mouth, and looked at me.  "Mom" did not come out, but she formed her mouth correctly and tried, as she tapped her hand on her chin to sign Mom.  Then she looked at the empty doorway and tapped the tip of her tongue at the front of the roof of her mouth twice.  Lily.  She was looking for Lily.

Amazing little wonder.  To chase away any remaining doubt, when she saw Dad this morning, she looked right at him and asked, "Da da?"

We still have some practical considerations to work out, but we are far to delighted to be discouraged.  Alleluia!  God is good.

What is going on in the wonderful world of Sarah?

Sarah's surgery in early May went well, and has mostly healed.  She had follow-up visits with both surgeons involved in the surgery. 

The bone that they had to work with was "paper thin."  That made the reconstruction work difficult.  It is thin because it the bone has been pressed from the inside.  I discussed it a bit when she had her first surgery in September.  Normally the plates in your skull are free floating at first.  The brain grows, the plates come apart, the bone grows and around again until you are done growing.  If the plates fuse to early, the brain still grows, and it grows where it can.  The growth can cause dangerous pressure concerns.  The pressure pushes the bone which sort of molds around the brain.  The bones can be thinner than normal and not as smooth. 

So, that is what the surgeons are up against.  They have to make sure that Sarah's brain is out of danger.  They want to minimize surgeries.  They want growth to be as normal as possible, both cosmetically and developmentally. 

This surgery was a big one.  And it seems to have gone very well.  About a week after the surgery we noticed something pointy pressing from underneath the skin on the top of her head.  We had already scheduled our follow up visits, and we were glad.  We showed both surgeons and neither seemed particularly worried that one (or a few) of the screws would have come loose. 

Side note: Before I was a mom I was a preschool teacher.  Once, a four year old boy climbed into my lap with a tool box and a look of consternation.  He picked through his tools very carefully, and chose a bright orange screwdriver. 
"What's wrong?"
"You have a few loose screws," and he set to work fixing them, just above my temple.  Maybe loose screws are genetic. 

In any event, we were told to be sure to call if the screws actually poked through the skin, in which case it would be a simple matter to remove them.  Otherwise, we were not to worry. 

In the follow-up visits, we also discussed the next step for Sarah.  Both surgeons have worked on many children with Sarah's syndrome, and other craniofacial issues as well.  Sarah's case is, apparently, unique and difficult.  One suspects that all cases are unique and difficult. 

The next step for Sarah is not typical for children with Apert syndrome.  The next step is a helmet. 

The helmet is custom made.  You have seen the kind of helmet she will get.  When children sleep only on one side and they develop flat spots, this is the helmet that is used to help correct the problem.  The helmet does not push and shove the head into shape, as say braces on teeth work.  Instead, it is molded very precisely to the shape of the head.  It is form fitting, without pressure.  Then they carve out the interior of the helmet where they want the bones to grow.  The head grows into the helmet.  Then they carve out more.  The idea is to train the growth of the bone, not to remold what has already grown.  So it only works when the kids are babies, because that is when the most significant growth happens. 

For Sarah, there is hope that this helmet will help to reduce the necessity of future surgeries.  Also, if it works well, it will help her head to grow in a more normal, round shape.  So, win-win.  Cosmetically useful, medically a good choice. 

There is risk though.  And I think this is why it is not typical for kids with Apert syndrome.  These kids have larger than average brains and typically more fluid in the brain.  Pressure is already a concern.  Add a helmet, and you can add pressure.  That is obviously not insignificant.  Pressure can damage her brain, as it did before she was born. 

Furthermore, the actual molding is more art than science.  This might be true for most of Sarah's interventions. 

For the next few months, after she gets her helmet, we will follow-up once a month with the orthopedist who is making and reshaping the helmet.  We will follow-up once a month with the plastic surgeon, who wants to keep a very close eye on the work, because it is atypical, and typical is already not simple.  We will follow up once a month, with a CT and a visit with he neurosurgeon to make sure we are monitoring intracranial (in the head) pressure very closely.  We will watch closely at home for any neurological symptoms.   It is a little intimidating, the number of doctor visits that will be required over the next few months. 

We are excited, and confident that it is the right thing for Sarah. 

Why has it been so long since I posted?  Well, there are excuses.  Sarah got sick, then the surgery then home then sick again.  Three hospitalizations.  The Lily got sick, awfully sick, twice.  The second time she was sick with both a nasty virus and Lyme's disease.  Then Sarah got sick.  It has been a rough couple of months. 

But the truth is, there are wonderful excuses too.  We have been out sightseeing and picnicing.  We have been playing and cooking and gardening.  I should learn to add pictures, because there are some wonderful pictures. 

We are all well now. 

I have decided that rather than blogging when I get around to it, I'll write every day.  Unscheduled things never happen when even the scheduled things are falling aside.  So, I am going to keep two blogs.

Wonderfully made

I will never forget when I first met my first daughter.  For months I had been losing sleep, changing my diet, scheduling my life around this little person.  For months, I had thought of myself as a parent, and I had enjoyed being Mom.  But there was something unique and beautiful in that first moment when I saw her.  I think it was the first time I had any real sense of the word 'awe.'  (Awe, like awesome, not Aw, like awww... how cute.  Well, maybe both.)

My world simultaneously grew and shrank.  Nothing seemed to matter outside of the little hospital room, and yet somehow that was bigger than anything I had ever known.  She was just beautiful.  Perfect. 

So this, I thought, is what it feels like to think that your child is incomparable.  I swore I was not going to be that parent.  You know, the one who cannot see any fault with their child.  But there she was, and she was perfect. 

And then an awful thought crept quietly into my head.  Would I love her less if she was not classically beautiful?  Would I love her less if she was not so perfect?  I did not want to dwell on the thoughts.  I did not allow the thought to formulate in words; it felt like treacherous anxiety.

In the years since then, I never thought about it again. 

These thoughts have been mulling in my mind for a few months.  Can I be honest?  Should I be honest?  How can I tell people this?  I have settled on Chronology for the 'how', and I am still not sure about the other two. 

There is a lot of contradiction in parenting (life?).  For instance, we often regret how fast time flies.  We are told we must hang on to every moment because the time will go by so quickly and we will miss it.  The truth is, things happen fast because so many things are happening.  If you ever had time to ponder the reality of the challenges and scope of parenting, would you do it?  Carpe diem!  Are you kidding me?  From day one challenges confront your sleep-deprived self.  How can one tiny person who sleeps all day require so much of me? 

Every step of the way the masses remind you to treasure this time because what is coming is harder.  This starts during pregnancy, and from what I can tell, it never ends. "Just wait until she is born, you'll never sleep again."  "Just wait until she speaks, you'll miss the days when she couldn't."  Just wait until she's walking, screaming, tantruming, borrowing your car and stealing your clothes.  Just wait.  Also, Carpe diem, or you'll regret it. 

Still, the set up is generally pretty good.  By the time I get around to wondering if I can handle it, it is generally over.  Because I am not living in every moment.  Some moments, I just survive.  And those quiet or sunshiny moments?  I seize those.  Forget the rest.  I don't want to exhaust myself seizing. 

I spent as much time as any other parent, I suppose, beating myself up because I did not want to cling to every minute of every precious day. There were enough wonderful days and pieces of days to fill hundreds of memory books, which I will never get around to filling because that would not be appropriate time seizing.  There are joys enough in the day; there is no need to invent them.  It took a second child for me to allow myself to moderate that common bit of wisdom guilt-free. 

When Sarah was born, I did not have time to think about much at the beginning.  There were so many things that needed urgent attention.  This surgery or that?  Surgery at all?  What about her heart, her lungs, her kidneys, her fingernails?  Can I hold her?

The first time I held Sarah, my heart filled in a very familiar way.  The world grew and shrank, inexplicably.  In utter amazement I saw my daughter.  "My God!" I thought, "Have you ever seen anything so beautiful?  So perfect?" 

Sarah, my tiny love, lifted my heart.  Her tiny hands would need surgery.  Her face showed tightness from pressure inside.  She was lovely.  Amazing.  Beautiful.  Perfect.  It is another moment I will never forget. 

"You formed my inmost being;

you knit me in my mother’s womb.

I praise you, because I am wonderfully made;

wonderful are your works!

My very self you know.

My bones are not hidden from you,

When I was being made in secret,

fashioned in the depths of the earth.

Your eyes saw me unformed;

in your book all are written down;

my days were shaped, before one came to be. 

How precious to me are your designs, O God;

how vast the sum of them!"  Psalm 139: 13-17

"Its not fair.  I don't want you to go to the hostible." -Lily

Its not fair.  Life isn't fair.  Isn't that what we were told growing up?  The knowledge doesn't make it any easier, just like the knowledge that somewhere someone is starving does not incline any child toward enjoyment of limp, bland veggies.  

I am feeling kind of pummeled.  

When I was seventeen my Aunt took a group of young pilgrim cousins on a pilgrimage to Santiago de Compostela.  It was a wonderful, though often trying experience.  On our pilgrimage, everyone had their own set of problems.  I doubt anyone would have said it was easy, but I also doubt that any two of us would cite the same difficulties.  Some had terrible shoes, and therefore terrible blisters.  Some had amazing shoes which they had not broken in, and therefore had terrible blisters.  Some had terrible packs.  Some had overpacked.  Some were morning people, some not.  Some needed coffee to even pretend to be human.  Some of us tended toward preachy philosophizing.  Some of us were simply too out of shape.  

I remember thinking one day, as we hiked uphill all day, "what could possibly be worse?"  The next day I learned that downhill all day is worse.  

It was a great group of people.  We were mostly Catholic, though not all.  We argued about which college was the best. (Thomas Aquinas in Santa Paula, California or St. John's in Annapolis, MD?)  We hunted for blue flowers.  We sought after fresh squeezed orange juice and the best cup of coffee in each town.  We prayed regularly, led by our fearless leader.  We read from the Magnificat magazine and from the little flowers of St. Francis.  We stopped at three in the afternoon, wherever we were, to pray the Angelus.  We tried to help each other.    

It was easy to see the best in people.  One cousin brought medical supplies, in case we should need them.  A few days in, he could be found at every stop attending to the gruesome blisters of both cousins and strangers.  (When we got to Santiago, he could not go around a corner without running into a grateful fellow pilgrim.)  One cousin could always be depended on to defuse brewing arguments, not with humor but with a sweet and calm sensibility.  Each side has merit, or if not, at least each side would refuse to yell at her.   Another could make anyone laugh.  

I am sure that we each have different memories, and I cannot be relied on for my memory.  Still, here is a favorite memory:

One particularly hard day ended rather too late for me.  I did not get as much sleep as I would have liked before I had to face the next day.  I have no idea what anyone else thought that morning, but I was tired and grumpy before I began.  It was the first morning where I just did not want to go.  Prior to that, I had started happily, and ended exhausted and in pain every day, with varying degrees of happiness or comfort in between.  I haven't got a clue what I said to my cousins, or if I said anything.  I hope no one recalls that part of that morning as clearly as I do; if they do they are sure to recall being the brunt of an unjust verbal assault, from a usually quiet cousin.   

I went out, in my still-slightly-damp-from-hand-laundering pants.  There, cheerfully charging ahead was my irrepressibly exuberant cousin.  Encouraging the stragglers, with a laugh in his eye and a slight wave of his hand, he started marching!  A booming baritone filled the damp and dewy morning. "I've been working on the railroad..."  Selfish as I am, I cannot recall (possibly did not even notice) the rest of the family's reaction to this... this what?  This unforgivable morning elation?  This ludicrous enthusiasm?  This inexplicably contagious cheer?  

I will never forget it.  At once, I felt happy.  Ashamed that I'd been feeling sorry for myself.  Glad to be in  wonderful company.  And, most astoundingly, cheerful and ready to face the day.  Nothing had really changed.  I was still very tired, and maybe a little discouraged.  I was facing another hard day.  But there he was, singing and my attitude, my outlook was entirely changed.  It was a little thing, but it marked such a dramatic change in me, that I won't ever forget it.  The song carries more emotional baggage for me than it deserves.  When I hear it (more often than you, likely.  I was a preschool teacher, and now I am a mom with young kids.)  I am cheered and encouraged again.  I think of my cousin with love and gratitude.  I think of the road to Compostela.  I think of how wonderfully happy I was.  I think of the Little Flowers of St. Francis, which I read for the first time on that road, and I think of Perfect Joy.  I think of blisters and flowers and aching legs and joy!

The lowest lows can turn into the happiest memories.  There are a lot of songs about how hard things make us stronger.  I agree, but its not enough.  Hard things often yield incredible joys.  Education. Childbirth.  That is the nature of a pilgrimage: going a great distance, even with discomfort, for some larger purpose- some joy.  Heaven even, if we consider life itself the pilgrimage.  

The past few days have been difficult.  Sarah went in for surgery on the 2nd, and was home on the 8th.  On the 10th, we took her back to the ER, after a brief consult with her pediatrician, with a mysterious blistery and spreading rash on her arm.  A frustrating few days later, we came home again on the 12th- barely in time for Mothers' day on the 13th.  Lily got sick on the Mothers' day, and is not yet well.  Today, my back is giving me incredible pain.  (And, the icing: regular hormonal discomforts returned the day before surgery.  I thought that wasn't supposed to happen until I stopped breast feeding?)  I am discouraged.

We are home now.  We have lots of follow-up visits, and we are having trouble scheduling them.  We are using gallons of Purell and Tylenol.  What measure shall I use to describe stress levels?  What could be worse?

I've been working on the railroad...

home and back again

Sarah's surgery went well. She was home earlier than expected, on Tuesday. She looks beautiful if you can look past some angry bruises. Unfortunately, Sarah got an unrelated infection. We took her to her oediatrician this morning. She called our neurosurgery team, and between all of us we decided to play it safe. So we are at the hospital again. IV antibiotics for 24 hours, and then we'll reassess. None of us have gotten even close to enough sleep in recent days. Sarah has been miserable. I will try to use the hospital computer tomorrow. I am using my kindle. Tedious typing. A real update soon. For now, we are optimistic but exhausted. We trust that God knows what He is doing, and maybe one day we will be clued in. Josh has kept us centered in prayer. Joyful feels disingenuous, but we are faithfully calm.

Surgery tomorrow

Sarah's surgery is tomorrow. We have to be at the hospital at 5:30 a.m.. If I had thought this through more carefully we would be at the Ronald McDonald house tonight. As is, we are planning to leave the house at 4. I am not excited.

I set aside important things, in these days leading up to the surgery. The house is a disaster. Instead, I pulled out my crafting skills for a few projects that felt more important than a clean house.

If Lily is going to live out of a suitcase, it is going to be her suitcase. So, I took Lily to a fabric store, where I let her pick out a few of those bundles of pre-cut quilting fabric. We needed a bunch of different prints. We cut birds and flowers and butterflies out of the various prints, and used wonder-under to adhere them to her boring suitcase. Then we decorated it with paint pens and puffy paint. It is beautiful. We made her carrying bag in the same way, for books and toys for the car, hospital room or anywhere else boring that she might find herself. She is excited about her bags.

Last time we were in the hospital, Sarah's ID bracelet chafed her skin. By the time we got home, it looked pretty bad. I had tried various things to protect her skin, while there, but none worked well. So, this time, I decided to make her a wide, snap closure, fabric bracelet, to wear snugly underneath her ID. I chose a few bright fabrics and set to work with this simple project. I was almost done when it occurred to me that I probably could have purchased something like a wrist sweat band for the job. Mine are cuter. At least that is what I am telling myself, since the job is done.

Since we are going to be in the hospital for awhile, we are going to move in. We bought a reed diffuser, so that the hospital room will not smell so hospital-like. We bought 3M hooks, so I can hang a cross in the room. I spent the day trying to decide what Sarah will want in the hospital. Definitely, her kick and play and her piano. Probably her mobile. Maybe her teddy bear. We are ready.

OK. We're not ready.

There is no way to get ready for a surgery this big. We have prayed, and solicited prayers. Lily is nervous, which means she is not sleeping well, and she is more needy than is normal. I am nervous, too, I suppose. Anyway, my temper is quicker than is normal. Josh and Sarah are both, blessedly, acting totally normal.

Dr. Keating says we should plan on being in the hospital for about ten days.

We are praying that Sarah does not need a shunt. We are praying that there are no complications. We are praying for a successful surgery and a speedy recovery. We are praying for grace, strength and peace.

Some people have asked what we need. Honestly, I do not know how to answer the question. At first I thought I should start an Amazon wish-list. I tried, but it felt disingenuous asking for the things I started listing. They are not needs. The reason I have difficulty is that we are in a fantastic hospital and taking advantage of a fantastic charity just up the road. They take very good care of us. So, if you are thinking you would like to help us out, and you are not sure how, we would be very glad if you helped the people who are helping us. Ronald McDonald House and Children's Hospital would be glad of your help.  And we do need your prayers.

We are hoping Sarah has a virus. That is not a sentence I ever thought I'd think, let alone say. Sarah is sick. She was not able to keep anything down all day, not even pedialyte. She is sleeping relatively peacefully now, and I am taking advantage of her sleep and her feeding tube to sneak in a few milliliters of pedialyte at a time. There is a nasty virus going around. A lot of Sarah's cousins, Aunts and Uncles have gotten sick. We are hoping that is what Sarah has. We are hoping because the alternative is worse. When we last talked to her Neurosurgeon we set up the neurosurgery to happen before the cleft palate repair and before her fingers are separated. This surgery had to be first because it can not wait. The surgery has to be done before the pressure on her brain reaches a point where it can cause damage. According to the images, we were not at that point but we were close enough to stop waiting and schedule the surgery. We were told to watch for neurological symptoms, which would be unexpected but not out of the realm of possibility. Watch for unexplained vomiting and lethargy. We called the neurosurgeon, in case he wanted us to come in early. He said if she gets worse, not better go to the ER. We called her pediatrician, who (assuming it is a virus) wanted us to keep her hydrated. Switch to Pedialyte, since she cannot keep the milk down. So, here I sit at 2:30 a.m. hoping that my daughter has a virus while a give her a "sip" of pedialyte every ten minutes or so. She has been keeping it down since 10 p.m., when she fell asleep and I started giving tiny sips instead of giving 1 1/2 oz every two hours. Josh will take his shift soon. Please pray that this is a virus and that she heals quickly. Also, I am hoping that we do not have to postpone surgery. Obviously, she has to be healthy to get surgery, but this surgery is on a timeline to protect her. We are calm, if tired. And we are confident, as ever, that God is taking care of our Sarah.

surgery scheduled

Little Sarah is not so little anymore! She is seven months old and she is beautiful. We are so proud of our wonderful little girl. Sarah has been making all kinds of sounds. She watches when people around her talk and she tries to mimic. She especially seems to enjoy watching people singing. From afar, music delights her as it does most children. But if you are holding her and you sing, she watches this curiosity. How do we do that? I enjoy her curiosity. She reaches for things and rolls every which way to see things. She scoots and rolls. She is not very mobile yet, but she is close enough that we do not leave her alone on a bed or couch. She bats at her toys. She sings and chats and yells, sometimes. In general, though, she is a pretty quiet baby. And she is a stoic. She rarely complains, even when you know something is wrong. (When she does complain, you had better fix it quickly though. She is not patient.) She loves to be outside, as long as it is not too cold or too bright. Our beautiful, wonderful, precious little girl is facing another major surgery. On May 2nd, she will go in for another neurosurgery. The primary goal of the surgery is to relieve pressure on the brain. This time they will be doing reconstruction. In the first surgery, she was too young to do any reconstruction. They took out some bone. Her brain, relieved of pressure, rounded the shape of her head. This time, they will be doing reconstructive surgery as well. This is a major surgery. As before, we are very happy with her doctors. She is in very skilled hands which belong to very kind men. Her plastic surgeon, in particular, was very excited about the outcome of this surgery. We are too. They will be using a ventricular drain to drain some of the excess fluid. They are still hoping to avoid a shunt. The ventricular drain drains out of the body and with it they can more closely monitor the fluid and the pressure. So, less fluid means smaller. (I do not really know how much.) They will widen where her head appears pinched, above her temples. They aim to allow the brain room to grow outward, as opposed to only upward. This relief mean her head will be rounder. She has very large "soft spots." All babies have soft spots, where the plates do not touch yet. Hers are much larger. Much. They will begin to address this as well. Please pray with us that she stays healthy between now and her surgery. And, of course, for a successful surgery. Thank you so much for you prayers for our little miracle. She amazes and amuses everyone who knows her.

Clinic

Sarah had her first clinic on Tuesday.

At a clinic, children with similar complicated issues come to the hospital on the same day so they can see many of their doctors on the same day. Sarah has been recommended more than one clinic. On Tuesday, we went to a craniofacial clinic. ENT, Audiology, Speech, Dentistry, Neurosurgery, Plastics and Genetics.

When we arrived at the hospital, we had a time, but no idea where to go. We knew we were meeting with doctors all day so it seemed important to be in the right place and stay on schedule. So we asked at the security desk on arrival. They sent us to an office listed as doing a number of things, but including the craniofacial clinic. It was not the right place. They sent us to the ENT(ear, nose and throat). I explained to the receptionist at ENT that I expected to meet with lots of doctors, all day, but I was not sure where I was supposed to start. I asked if I was in the right place. Without looking, he just answered, "You'll have to come here eventually. Sign in." I tried to ask if I would miss my other appointments if I was in the wrong place. He gave me a look like I was crazy. Puzzled and a little worried, I sat down and waited for an hour or so. We worried the whole time that the reason it was taking so long was that we were not there at our scheduled time. We worried that we'd throw the whole day's schedule off.

Finally, we were brought back to a patient room where we met with a PA. She asked us a lot of questions, and then sent us away for a hearing test in Audiology.

Audiology and Speech are in the same place, so we did both while we were there. Audiology and speech were both good, but they did not offer new information. Audiology retested her ears, and reiterated that she has fluid in her ears causing hearing loss. Speech was glad to hear how well Sarah has been doing with her bottle.

It had begun to dawn on me that maybe we did not have appointments. Maybe we just had a list of doctors. We asked our friend from speech. She explained that we were where we were supposed to be. She told us that we should have gotten a packet in the mail explaining how the clinic works. We'd bounce around all morning between one set of doctors, then break for lunch, then we'd go upstairs and meet with another set of doctors, but they would come to us, so we'd just stay put. I wasn't sure if that should make me feel better or worse. It meant that it was not my fault that we waited for an hour in a waiting room. It also meant that there was a possibility we would wait similarly for each other doctor. She sent us back to ENT and we went with the confidence of people who knew where they were and where they were supposed to be.

ENT was closed for lunch. The receptionist (not the same one we had met earlier) told us to either break for lunch or try Dentistry. We went to Dentistry.

Dentistry was something of a surprise. It was not on my radar at all. Apparently, kids with Apert syndrome don't always have all their teeth. Sarah's jaw looks "full." There is not much to do now, except take note. The dentist thinks she has all her teeth. One suspects that they could x-ray and see more, but even with more information there is not much to do this early.

Back at the ENT office, we finally met with a doctor. He recommended tubes in her ears. The tubes will help the ears to drain. The will also vacuum out the fluid currently causing her hearing loss. Placing the tubes is relatively simple and it does not take very much time, but it is done under anesthesia. So, he is going to try to coordinate with Sarah's other surgeons.

After the fluid is gone, she will get another hearing test. It is possible that the tubes will resolve her hearing. If not, we will follow up with ENT to find solutions.

We did not break for lunch. We were afraid that all the waiting had not left us time for the afternoon doctors. So we grabbed a bite on the go.

The afternoon was much less stressful. We did not wait in the waiting room for long, they took us right back. We did not wait for the doctors for very long in the patient room. First someone came from psychiatry. I am glad that they are following, but the conversation was short. Sarah seems to be doing well, developmentally. She is a baby, acting like a baby.

We waited to see who would come in next. We could hear some of our favorite doctors in the hall. The neurosurgeon came in first. (Josh offered condolences since the Pats lost the Super Bowl.) But before we had gotten far, the Plastic surgeon came in. And a doctor from genetics. And then another plastic surgeon. They did not each meet with us and then converse elsewhere. They did the consult together. It was pretty awesome.

It is fun to watch a discussion on an interesting subject between the top experts on the subject. The topic that day, in that room full of brilliant minds was my daughter.

Sarah needs surgery to separate to separate her fingers, to repair her cleft palate, to protect her brain from pressure and to reconstruct. The biggest question of the day was not what needs to happen, but what is the timeline?

Sarah's next surgery is a big one. Her neurosurgeon and her plastic surgeon will work together to alleviate pressure by widening the area for her brain to grow, so that it can out not just up. (Or, as Lily put it, "Her head is tall, tall, tall!") They will use a ventricular drain to drain some of the fluid, but in a very controlled way. They are still hoping to avoid a shunt. She does have more fluid than is normal, which contributes to her head size. It is an art. Too much fluid puts pressure on the brain. The fluid is helping though, it acts like a balloon, helping to hold shape and also a cushion. The ventricular drain will help them monitor all these factors with precision. They will be grafting bone, filling in some of the holes.

After it all, her head will be rounder and look smaller and, of course, her brain will be protected. It is not scheduled yet, but it will be in mid to late April.

The experience was surreal. I left the room thinking that the surgery was no big deal. Company can skew perception. It took a few days for the magnitude of this surgery to sink in.

I still do not have the fear that I expect, so I thank you again for your prayers.

It has been a long time. I am sorry. It is not because I do not have the time, although many days I do not. It is not because I do not have the inclination. I broke my computer. I am borrowing one tonight.

Sarah and Lily are doing very well! We have fallen into a routine. I should tweak details, since we are probably going to bed too late and waking up too late. But we have a routine, and it works. Even on Josh's thirteen hour work days, we are usually doing just fine. I can keep up with my life, but I cannot catch up.

Big news! One of Sarah's doctors cleared her! Sarah does not need to consult with cardiology anymore! This is fantastic news. Cheer! So, the number of doctors we have to follow up with went from too many to count, to one less than that.

We went to a lot of appointments last week. So, here's the latest:

Audiology: Sarah did not get the normal hearing test that newborns get before leaving the hospital. Apparently, babies with a cleft palate usually fail the screening. So, we went for a much more extensive, and interesting, brain stem response test. Sarah slept in my lap with little probes all over her head. The audiologist tested each ear independently with a tiny little speaker which made tiny little noises right in the ear. The idea is that if she can hear the sound, the brain stem will respond sending little pulses, which the probes can pick up. She tested various volumes and pitches, and established that Sarah has pretty significan hearing loss in her right ear and slight hearing loss in the left. That would be useful enough information, but the test goes on.

She placed a device on the bone behind the ear, and it made a small noise. I guess it is a little bit hard to describe. The question is, is the hearing loss physical or neurological? So, the test bypasses the middle ear. Does a vibration on that bone register a response? It does. The hearing loss is physical, and therefore treatable. So, the final question is, is the hearing loss a question of anatomy or is there fluid? To test that the audiologist uses a tiny device in the ear. She explained what she was doing, and could not repeat what she said. My understanding is that she essentially used a mini-plunger (with a technical name that starts with a T) to see whether the ear drum could move. Sarah does have fluid in her ear. This is not a big surprise; she is healing from a significant respiratory virus. The ENT (Ear, Nose and Throat) doctor will have to evaluate whether or not she needs tubes placed to drain the fluid, and also whether or not there is also an anatomical issue.

Nephrology: (blood pressure & kidneys) They are not worried. They stripped her naked, weighed her, put her on crinkly, noisy paper on a patient bed and then took her blood pressure. It was high. They did not, from that informative diagnostic, treat her for high blood pressure. They let me hold her, feed her and comfort her. Then took it again. Her blood pressure is fine.

The history is that she had high blood pressure in the NICU. It was high enough that they did treat it with blood pressure medications. It came down to within a normal range when she stopped gagging all day- that is- when they took the feeding tube out of her mouth because the g-tube been surgically placed in her belly. Apparently gagging all day raises your blood pressure.

There was also a prenatal finding that had something to do with the kidneys. A duplication of some duct or other. To be honest, it was so far down on the list of early concerns, I did not fully understand. In any event, it is resolved. We follow up with nephrology in April. They ordered ultrasound imaging, but they are not concerned.

Neurology was interesting. Apparently, the rule of thumb is to expect to lose about a month developmentally with each hospitalization. So, I guess that means we should expect Sarah to have lost two months. It is a weird guage, since kids are all different anyway and presumably regression will also depend on why the child was hospitalized. Still, it is a useful note.

The neurologist explained that Sarah's anatomy makes moving her eyes difficult. Eyes sit on the out side of a cone- like if you put a beach ball in a traffic cone. The muscles which move the eye are inside the cone. Sarah's is more narrow than normal, which constricts the muscles. Also, normally eyes are imperceptibly turned in toward each other. If they were parallel, we would see double. Sarah's eyes are turned a little more toward each other than is normal, so she has to work to make her eyes see a single image. That is why when she is alert and looking at something, her eyes move in tandem. When she is tired or dazed, her eyes often cross.


Neurosurgery: Our doctor ordered a CT, but says she looks fine. He reiterated that the longer we can delay surgery the better. As has been explained before, the earlier we do these surgeries (relieving pressure on the brain, facial reconstruction) the more likely it is that they will have to be repeated. Making sure that she gets the surgeries before her brain is in any danger is the main concern, but fewer surgeries is better. We will wait as long as we can. Also, the surgeon is a Pats fan, which we figure means that he knows his stuff.

Radiology did a CT, and the radiologist who met with Josh was initially very concerned. So Josh was concerned. Apparently, she simply had not seen the prior images. The images, I can tell you having seen them myself, are pretty startling. I may ask for a specific radiologist next time, since we have relationships with two. Any technologist in the department can take the images, and the radiologist interprets them and sends the report to whichever doctor ordered them- in this case neurosurgery. After comparison, she said she did not see much change, which is good news. The neurosurgeon will get the images, and we will go from there.

Plastic surgery: Plastics have a number of projects with our little girl. They will work with neurosurgery on facial reconstruction. They will separate her fingers. They will repair her cleft palate. These things are all a little daunting to me, but the surgeon inspires confidence.

The palate will not be complicated and it has to be done before she is a year old or she will have speech delays. That makes sense. Fix the mouth before she learn to use it to make sounds. A year sounds generous to me, since babies begin to mimic younger. Her surgery will be sooner though, so I will not fuss.

Her fingers will be separated in three surgeries. The first will separate the thumb, or perhaps the thumb and the pinky. That surgery is relatively easy, and the surgeon suggested that he might coordinate with his collegue who does cleft palate surgery; likely they can be done at the same time. Fewer sedations!

Gastroenterology: Reports that she is a "feisty little mic." We like that doctor.

Her G-tube is doing what it is supposed to do. The site of the surgery looks good. She will need to upsize soon; babies grow fast. If the peg (the bit that goes into her tummy which attaches to her feeding tube) pops out, we are told we should just put it back in. No big deal. Right. We are pretending not to be intimidated by that apparently common occurrence.

She is gaining weight and looks healthy. So, the feeding is going well! She is still on exclusively breastmilk. (My sister calculated that I spend 22% of my life feeding her: 20 minutes to pump, 20 minutes to feed, every three hours.) I'd like to complain about the pumping, but I cannot in truth. I call it my baby-enforced break time. I read or play on facebook on my Kindle while I pump. (Find me on Facebook!)

All of this brings me to the appointment which was most exciting to me: Child development! I did not know what to expect. Everything in development affects everything else. With my Montessori upbringing, I have been concerned that the fusing of her fingers would inhibit learning. I worry that the palate will slow speech. I worry that because she does not move as much, her brain will not develop properly. Moving matters. Activity, or lack thereof, does affect development. Obviously, the muscles themselves grow stronger with use. Tightness can cause pain. These thing matter. But also, as you use your body, your brain develops connections. Using the arms alternately, rather than in tandem, for instance helps to create pathways in the brain. Babies naturally do things to start this development, but not if they are sedated, as she was for so long, or if their muscles are tight, as hers are.

We had a long and fascinating consulatation and we left with a list of goals and ideas to reach those goals for Sarah. We were also encouraged. She is doing very well, developmentally, all things considered. Yay!

On the list of things yet to do:
We have to get the county to evaluate her. They will be the ones to provide regular, in home, speech and physical therapy. We need it.
Opthamology. Her eyes do not close all the way. They have to make sure they eye is not being damaged, and at some point, I assume, they will test her vision (though I have no idea how.)

Scheduled:
At the end of the month, on Februaury 28, we will be taking Sarah in for a craniofacial clinic. Many of the teams we work with will all be in the same place at the same time, including plastics, ENT, and neurosurgery. I believe speech will be there too. I have never done this before, but my understanding is that we meet with many doctors during the course of a long day. Other kids with similar issues do as well. At the end of the day the doctors get together and discuss each case with one another and make a plan. They can coordinate surgeries and make recommendations with each other in mind. So, at the end of the month, I expect to have a much better sense of what the year will look like for little Sarah.

Please keep us in your prayers.

I heard the bells..

I heard the bells o Christmas day, their Old familiar carols play.

Christmas songs are familiar. The same songs every year, with occasional additions, bring joy. It is the one time of year when everyone hums, everyone knows the song. These enduring carols each capture a glimpse of Christmas; they reintroduce the story of the nativity. Or, in some cases, they glory in the celebration itself, disposing hearts toward joyful appreciation.

And mild and sweet, their words repeat with Peace on Earth, Goodwill to Men.

Like a bell, repeating, resounding, echoing sometimes loud, sometimes quiet, this carol is simple and lovely, musically. It begins with sentimentality. Soft, familiar. Beautiful. But is it real? Is there any depth to the joy of Christmas?

I thought how, as the day had come, the belfries of all Christendom had rolled along the unbroken song of peace on Earth, goodwill to men.

This year, a familiar battle played out once again in my new hometown, Leesburg, VA. Christians, every year, want to put a nativity scene on display at the courthouse. Atheists see the dislay as an assault on the separation of Church and state. The court tried to settle the dispute fairly. Last year they decided that anyone can put up a display, they just need to get a permit which are given first come first served. It seemed sensibly settled. Christians could have our nativity. Non-Christians who want to celebrate a secular Christmas could have their secular displays. An atheist display last year included a "letter from Jesus" enjoining his followers to follow him with more humilty.

But, of course, mankind being what it is, sensible solutions did not solve the problem. Christians got angry with the (relatively innocuous) displays. Atheists were not appeased- they did not want their own display, they wanted the nativity to disappear. The battle continued. And this year, the atheist struck a low blow. Will Christians still stand behind free speech? Atheists hung a skeleton, dressed as Santa, on a cross as their display. Defended, I could almost be persuaded that it held a cerain artistic value. Something about the consumerism of a secular Christmas. The sin of man put to death. conquered by the cross. It could almost be a Christian message. This delusion sharply deteriorates, however, when you bring your three year old through town. It is an assault. It is meant as an assault. We are supposed to see it, cringe, and take down the nativity.

Then in despair, I bowed my head. "There is no peace on Earth!" I said. For hate is strong, and mocks the song, of peace on Earth, goodwill to men.

Hate is strong. There is so much evil in the world. The skeleton Santa is just an ugly image, albeit an image designed to disturb the joyful, if sometimes shallow, sentimentality of this season. Perhaps it is silly to get worked up over an image when there are so many examples of real evil, real hatred.

It is easy to find examples of hate. Easier still, if we can expand what we mean by hate to evil. Evil.

People lie. Sometimes they lie at the expense of other people. Good people fall to pieces; destroyed by things like addiction or mental illness. Religious zealots attack. Atheists recoil and respond with equal or increased venom. War. Poverty. Greed. Illness.

...

I began to write this post over a week ago. When I began, I had a clear direction. Somewhere in the middle, my thoughts frayed. I could not finish it.

I felt as though I was unraveling too. Every end I could imagine fell flat. I wrote and erased about a half dozen endings. They all seemed either false or trite.

I have often used this blog to talk myself out of feeling sorry for myself. I believe with all my heart that God uses suffering to grow great fruits. I believe that we are called to be joyful.

The tagline I chose, "Rejoice always; pray without ceasing," finishes in scripture with the explanation, "for this is the will of God, in Christ Jesus, for you." Really God? This is your will? Sarah was only home for three weeks! I could not sleep. I could not go home. I was second guessing my parenting. If I had noticed sooner...insisted we stay in the ER the first time... If I had not taken my daughter out of the house... Could I cave protected her from this? Protected all of us? I was feeling very sorry for myself.

On Wednesday, Sarah seemed to be improving in many real ways. Most notably, she was breathing on her own. We had moved out of the ICU and into a "family centered care" wing. There, I was primarily responsible for Sarah. But, I could not feed her. Only the nurses were allowed to use the machines, and it takes a machine to feed her. I could not give her any medicine. I could hold her, play with her, burp her and bathe her. No one came into the room except by request. I had no idea how long we were going to be there. Days? Weeks? The doctors would only vaguely answer, as they always do, "It depends on Sarah."

I was lonely. I told myself I deserved a bit of self pity and I indulged. I spent Christmas, New Year's and my wedding anniversary in the hospital.

Sarah cried all day. As often as she was awake, she cried. It broke my heart. I began to feel like I was not strong enough. Or maybe, just not attune enough to my daughter. I was something not enough. I would get her to sleep, and then some unsuspecting hospital employee would come in. They knew me. They knew I was friendly and wanted to chat.

Imagine being the brunt of an enraged, probably unhinged Momma because you dared to say, "Hello!" This did not help my social depravation.

Its OK, I told myself. Sarah usually sleeps all night. She often sleeps from midnight till ten. I talked to my husband on the phone. He reassured my, with his calm faith, that God was in control.

At three in the morning, Sarah was still crying. I was crying too. I put her in her crib and went to my bathroom and cried. But, not wanting Sarah to be alone in her misery, and certainly not wanting to be caught crying, I composed myself. My body, if not my emotions, were under control. I went back out. Too tired to sing, or hold my daughter, I decided to read a light-hearted murder mystery and pat her back.

The first page I read, the hero of the book (not an overtly Christian book, just light brain candy) preached, "cast all your anxiety on Him, because He cares for you."

I must be very dense, that the Lord always chooses such obvious messages and vehicles for His message. I closed my book and I prayed. I tried to set aside my anxiety. I calmed. Sarah calmed. By four, we were both asleep.

We were woken at seven. I was livid, but I bit my tongue. I had to know what the plan for Sarah was. As it turns out, at seven, they took her off all oxygen support. They knew she did not need it awake, but to go home, they had to see her in a deep sleep, and not struggling to get enough oxygen through her blood. Fortunately, since she had been awake so long, she slept easily all day. We were discharged that night!

Then pealed the bells, more loud and deep, "God is not dead, nor does He sleep; the wrong shall fail, the right prevail, with peace on Earth, goodwill to men."

Nothing huge changed. There is still evil throughout the world, and indeed much close to home.

But if we listen, and sometimes even when we don't, the almighty, eternal, all-powerful God speaks. The evil cannot win.

God is listening. He is watching. He loves us. Our Father, ever alert to our needs, cares more deeply than we can imagine. Our pain pains Him. He is more aware, and more sensitive to hate.

And we, His people, are the bells carrying His message, ever the same. He is eternal and eternally good. He has conquered the night. His is the victory, and the evil of this world- deeply painful and impossible to ignore- is not eternal.

Till, ringing singing, on its way, the world revolved from night to day. A voice, a chime, a chant sublime, of peace on earth, good will to men!