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.