Monday, May 14, 2012

"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...

Thursday, May 10, 2012

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.

Tuesday, May 1, 2012

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.