Broken tools

Baby update: I do not have any new news.  I have to go to the doctor twice a month- once with the regular OB and once with the specialist.  I have to get the MRI and the heart echo.  At thirty-two weeks, I will have to go to the specialist once a week.  I am not anti-medicine or anti-doctor, but I am beginning to weary of the doctor visits.  I should try to see them as encouraging and wonderful.  We were at the specialist's office today, getting yet another ultra-sound, and Josh commented that this was likely to be a very expensive pregnancy.  All I could think was, thank God medical insurance is not like car insurance!  They cannot raise our rates.

The air conditioner is broken.  I did not know it was dead, though I knew it was unhealthy, until I tried to turn it on last week when the temperatures were reaching up and over a hundred.  My parents, happily, had an unused window unit in their garage, which is now in our bedroom window- violating the homeowner's association agreements.  I refrained from further violation, in the form of a clothesline in the backyard.  I kind of want one anyway, and this seemed like a good excuse.  I was afraid, however, of incurring the wrath of the association.  Better to quietly break one rule, broken by necessity, than to flagrantly ignore all the rules.  Our dryer is upstairs in the hall, between the bedrooms.  I will not run it in the heat.  I chose instead to bring my laundry to my parents' house, like a college student. 

In other unrelated news, last week the Church celebrated the forty-fifth annual World Communications day.  In honor of this event, my computer was attacked by a virus, our camera stopped working, and my cell phone broke.  The message couldn't be clearer: I need to update and use newer, better technology. 

The annual event is one I had never heard of before this year.  It may have slipped by me again this year as well, except that my friend wrote a book.  Matt Swaim wrote a book last year, which I thoroughly enjoyed and highly recommend, called, The Eucharist and the Rosary: Mystery, Meditation, Power, Prayer.  This year he put out another book.  Prayer in the Digital Age came out this summer, and on the eve of the Church's celebration of World Communications Day, Matt visited to the parish where I grew up to discuss the topic.  If I am honest, I was not excited about the book.  I am not incapable of using modern technologies, but neither am I one to want the latest and the best- good enough is good enough for me.  Anyway, I thought that the book was going to explain how to incorporate the cool new gadgets into prayer.  I guess I thought Matt was going to explain how to use the confession app, for instance.  I should have known better. 

Matt discussed how changing communications can affect how we view people.  He warned us to watch out for online discussions wherein we attack people verbally in ways we never would in person.  He discussed the idea that in forums, like Facebook, we present the world with a created persona, and we use that created persona to interact with other like inventions.  These profiles are not like us.  We think about how we want to be percieved, and we project that edited version of self into relationships or "friendships" with other super edited personalities.  Though forums of this kind of a lot to offer, there are grave dangers in vesting too much in this alternate reality.  We can lose our sense of self.  Or, we can lose our awareness of the real dignity of each person.  We begin to view people as collections of data, rather than unique individual made in God's image. 

The latter leads to all kinds of problems, which are readily apparent in our daily lives.  Viewed as unexceptional compilations of bits, the people we interact with have no true value to us except to impart what data we might find useful.  That is a particularly ineloquent way of expressing that one of the dangers of this mindset is utilitariansim, which is the mindset which questions the value of the life of my daughter, Sarah.  It is a rampant and vicious rejection of the sanctity of life. 

Matt did not condemn modern communications.  He insisted that kept in their proper place, they are useful.  He discussed some of the various ways that technology can be an awesome aid to our prayer lives.  Whether it be to set our phones to remind us to pray at specific times, or perhaps to inform our faith, or to gather groups to pray and inspire without geographical boundries, contemporary communication can be an awesome tool.  With that in mind, I will share the statement which Papa Bene released discussing social communications:  Truth, Proclamation and Authenticity of Life in the Digital Age.

Again, in honesty, I have not yet read Matt's second book.  I have it in hand now, and will read it soon.  If the book covers the same ideas that Matt discussed in his talk, it is indeed well worth reading. 

As I decide what can be fixed, what I can live without and what needs to be replaced, it has been useful to meditate on the role of social media in my life. 

"Believers who bear witness to their most profound convictions greatly help prevent the web from becoming an instrument which depersonalizes people, attempts to manipulate them emotionally or allows those who are powerful to monopolize the opinions of others. On the contrary, believers encourage everyone to keep alive the eternal human questions which testify to our desire for transcendence and our longing for authentic forms of life, truly worthy of being lived. "  Pope Benedict XVI

Diagnosis

We got the results of the genetic test back yesterday.  We have a diagnosis.  Sarah has Apert's syndrome.

I am not going to lie.  I am more intimidated by the diagnosis than I anticipated.  I have been reading about the syndrome.  The genetic counselor sent me a number of resources.  Some are medical, and they describe what the diagnosis means from a medical perspective.  Some are personal.  There are a number of different websites put up either by people who have Apert's or by their families.  It is simultaneously encouraging and intimidating to read these stories.  

There seem to be a wide range of potential symptoms for people with Apert's.  

"Do you not know that your body is a temple of the holy Spirit within you, whom you have from God, and that you are not your own?"  1 Corinthians 6:19

We are each temples for the Lord.  There are a lot of wonderful teachings about how to interpret that verse.  The context of the verse is sin and immorality.  We are told here that we must avoid sin, not just because we fear Hell, but because we are temples.  We care for our bodies with the same diligence that would attend our care for His home.  

But let me take you back a step, to the old Testament verse which got me thinking in the first place:

"Then David said to his son Solomon: "Be firm and steadfast; go to work without fear or discouragement, for the LORD God, my God, is with you. He will not fail you or abandon you before you have completed all the work for the service of the house of the LORD.""  1 Chronicles 28:20

I was looking for an answer to my fears, and that is what I was given.  I have a friend who keeps reminding me that our children are not our own.  We are just stewards; they belong to God.  We do the best we can to teach, form, raise and love them.  But ultimately, the work is for the glory of God.  As we raise up our little temples, teaching them to hold God in their hearts, we are doing the work Solomon set out to do.  And God is with us as we do it.  "Go to work without fear or discouragement."  It is what I needed to hear.

doctor frustrations

I went to the doctor yesterday.  It was a long overdue visit with my original OB.  I have not seen him in since we first got word that perhaps there was something to worry about.  I liked him when I met him, and he had come highly recommended.  I asked a few questions, and I asked his staff questions too.  I did not grill him, as I have grilled doctors before.  I liked that his staff has been with him for years- it is a small office and the staff has been the same for aver a decade.  I am suspicious of doctors who have a high turnover rate in their office staff.  I liked his manner.  Lily liked him, and he joked with her.  I liked that he not only plasters the walls with baby pictures, as many obstetricians do, but he keeps children's books in the office.

Now, I am beginning to question whether I want to stay with him.  What I do not like about him is that he seems to send me away for every possible test.  He does not even do the glucose test in office!  I have no idea how normal this is, but I do not like it.  That alone would not put me off, but in light of everything, I am losing confidence in him.

I want a natural birth.  I want the least medical intervention necessary for a healthy birth.  I do not want drugs and IVs.  I do not want to be tied to a bed in the hospital.  Women are very different, and it seems important to me that whatever a mother wants in this respect, should be her choice.  Some doctors push Ceseareans, some epidurals, some do not push at all.   That is what I want.  So, why do I choose a doctor in a hospital, not a midwife in a birthing center?  Keeping stress low matters in pregnancy, and my choice keeps my stress low.  I want a hands-off doctor, who will intervene only when necessary, and who will know when it is necessary.

Most troubling, when I asked him about the various tests, he seemed not to me familiar with them at all.  He did not know what they showed, or even where and why I had taken them.  So I asked, just to make sure, if he had received the reports from all my other doctors.  He had to look, but he had in fact received them.  If he had said something like, "I am sorry, I received them but I have not had a chance to look at them yet," or "Yes I saw them, but to be honest, I am not a specialist and I did not understand it all," I would be OK.  As it is, it seemed to me that he was not in the slightest interested in understanding my specific case.

If the doctor is going to hand off every test, every concern, every worry, to another doctor- why am I with him?  He would not even interpret the results of the last test I got, he just read me the report written by another doctor.  He would not tell me what was going on, whether or not he was worried, what, if anything, there was to be worried about, he just sent me to a specialist.  I do not want a baby-catcher with letters after his name.  I want peace of mind. The doctor's job, from my perspective, is to understand what is going on when I cannot- and to help me deal with it.  If everything is normal, I do not need a doctor.

I will have to make a decision soon.  I chatted with the genetic counselor about all this.  She agrees that I should feel like he is directing, not just externally participating in my care.  But, she thinks I should present him with my frustrations and give him a chance to respond before I leave.  Decisions.  I guess I should count my blessings.  It is not every mother who has the luxury of choice when it comes to which doctors we want caring for us.

The yoke is easy, the Cross is not

I have been couch hopping for a week.  Well, perhaps couch hopping is a more disagreeable depiction than reality.  I have been staying with family- on beds, but in more than one place.  We have not spent three consecutive nights in the same place.  We have had a lovely time visiting, but we are ready to go home.

We came home (is it confusing that I refer to my own house and my parents' house as home? Sorry.)  because someone in the family needed help.  It has been a wonderful, though stressful, week- but it is not my story to tell.  We cannot do much, but I can certainly help with childcare, so that is what I have been doing.

There is always something to worry about.  We can make ourselves sick with worrying.  Sometimes worries are small- I do not have the right salad dressing and my two year old might have a temper tantrum.  Sometimes they are very serious.  We face illnesses and money trouble.  These are the burdens of life, and they come in all forms:  mental, physical, financial.

"Come to me, all you who labor and are burdened, and I will give you rest. Take my yoke upon you and learn from me, for I am meek and humble of heart; and you will find rest for your selves. For my yoke is easy, and my burden light."  Matthew 11:28-30

What does it mean? How does it square with that other verse, "If anyone wishes to come after me, he must deny himself and take up his cross daily and follow me." (Luke 9:23)  

No one has ever (well, few and no one sane) argued that the life of a Christian is supposed to be easy or stress-free.  Is the verse referring to Heaven?  When we finally come to the feast, we will not have to pay or wash the dishes?  We will not have to order off-menu to satisfy the specific needs of our little ones.  (For clarity: here I am not referring to my darling two year old, but to little Sarah and her demands in utero.)  

I think not.  In Heaven those worries will be gone.  But here, we worry.  The burden does not feel light, it feels heavy.  Sometimes, very heavy.  It is not always easy to be a Christian.

I am no theologian, but I like to think that He is talking about something which we can all understand.  When we are struggling, whatever our specific struggles may be, we go to our loved ones and we talk about it.  We call it "unburdening."  Even when they cannot help, a listening ear can be enough to alleviate.  We get advice, hugs, prayers, support and sometimes just and ear or a shoulder.  Imagine the very best of friends: the one who knows what you are going to say before you say it, but still listens.  The one who could finish your sentences, but does not.  The one who always has the best advice, when you need advice but who also knows when what you need most is a hug.  Jesus offers to be that friend.  Only, He is God.  He knows me better than I know myself and He loves me more than I can imagine.  He can work miracles, and it is only through His grace and power that I have any of either.  

Ok, God. Here I am. I am giving you my burdens.  I will try to learn to hear your voice more clearly, so that I can take that easy yoke.  In you, I will find the strength and courage to carry my cross.  In you, I will rest secure in your love.  

Calm and not Chaos

I went to the doctor again today.  I thought I was going in for a follow-up visit about the amnio.  It was also a consultation about a genetic test.  They wanted to test the cells which they obtained for the chromosomal tests (the amniocentesis) for Apert's syndrome.  Apparently they can do that.  The test is usually done after birth, and it is usually over 99% accurate.  Before birth, the test is only about 90% accurate.  As I understand it, it is kind of like a home pregnancy test in that it is pretty accurate, but not perfect, and when it is wrong it is a false negative never a false positive.  So in about two weeks, we will either have a confirmation or we will remain in diagnosis limbo, likely until birth.

The doctor I saw today is an awesome doctor.  Josh and I both had the same thought walking out of his office: "I wonder if he can be the regular OB."  (He cannot.  He only does high risk.)  He answers our questions, and makes us feel comfortable asking them.  Some doctors treat you like you cannot possibly understand, and some doctors are always in a hurry.  Setting him further above even other good doctors, his presence is calming.  He does not shy away from difficulties.  He was the first to begin to explain some of the very serious things that could be wrong.  He does not couch his explanations in propitious platitudes.  But he is calm and kind.

The most dangerous possibility currently on the table is called CHAOS.  The radiologist at Children's was the first to mention it.  She did not blow it out of proportion, but certainly wants to keep an eye on the lungs and hopefully rule out this worry.  CHAOS stands for congenital high airway obstruction syndrome.  My understanding it that it is a blockage that obstructs airflow so that the baby cannot take that all important first breath.  There are treatment options, but with serious risks.  Today, the doctor says he does not think it is likely.  By all means, we will get the follow up so that if it is an issue we have the right doctors on hand at birth.  He does not think it is CHAOS.  This is not as emphatically out of the question as trisomy is.  Nonetheless, we will take good news when we get it.  CHAOS is unlikely, and that is excellent news!

Guilt and insecurity

If I pray that my daughter does not have any of the various syndromes that the doctors are concerned about, does that mean that I love her less?  Or, conversely, if I do not pray that but instead pray for the courage to take care of my daughter in any of the many worst case scenario possibilities, do I lack faith?

Parents always second guess themselves.  We worry about everything.  Before I was a parent, I did not understand how these intelligent, loving, wonderful people could be so insecure in their decisions.  I worked in childcare, so I was on the receiving end of many questions.  I first noticed when I was seventeen.  I had been working in childcare for a year.  I was a confident, and competent, caregiver.  Parents started asking me questions about their children's development, health or behaviors.  Sometimes I knew the answers, sometimes I did not.  I was never, that year, faced with questions for which I could not find answers.  I was baffled.  Most of the parents were well educated, confident, intelligent people.  Why would they ask me, a teenager, if this behavior was normal, or if they should be worried about that rash, or if their child should know their colors by now?  

When I became a parent myself, ten years and thousands of questions later, I began to experience the same insecurities.  In my case, I worried very little about my daughter's development, but quite a bit about her health.  She was a very healthy baby, but I worried whenever she coughed.  I stayed up all night with her, the first time she had a cold, because I was afraid she might stop breathing.  I could remember thinking that all those questions, worries, and insecurities has seemed very silly and trivial to me.  Was it possible that I was less confident in caring for my own child than I had been in caring for others?  

Every decision felt very important and I probably over-analyzed most of them.  Vaccinations are the easiest example.  I read books and studies.  I consulted other parents.  I consulted a few doctors and nurses.  It was not a trivial decision, but neither did it have to be the source of frustration and worry that it was.  When I finally made a decision, having carefully listened to both sides, I worried whether I had made the right decision.  I knew how many people, whose opinions and expertise I valued, would disagree or even disapprove of my choice.  There are other examples as well.  Ask my poor husband, who had to listen to every side of every question.  

Now, I am facing different insecurities.  I can find answers, as I have before.  I can find the many and varying opinions of those whose many and varying opinions matter to me.

I have been told that difficulties are not from God.  If we tell Satan to leave our baby alone, in the name of Jesus, than he will.  He must.  I don't know how to receive that kind of advice.  Of course I believe that God can heal.  I believe in miracles, I have seen them.  I know people who have been miraculously healed by God's hand.  I also know people who have been healed, just as miraculously, by the hands of excellent doctors.  I also know people who were not healed.  If I do not pray as they tell me to pray, does that mean my faith is weak?

Sometimes I feel guilty, praying for perfect health.  Does the prayer admit that there is something less desirable about a person who has health issues?

I believe that God can heal.  I believe that God wants His people to be happy.  I believe that more than our happiness, He desires our closeness.  I do not believe that suffering has no place in Christian life.  Through suffering, we can come to be more like Christ and come to know Him better.  Suffering can teach empathy.  Suffering can teach humility.  Suffering can bring joy.  No one wants to watch the ones we love suffer, least of all, I expect, does God.  But we do, and sometimes the suffering fruits into wonderful gifts.

If my dear Sarah is born with any of the many complications my doctors are concerned about I will not love her less.  If she is not, I will not love her more.  I would be relieved that she would not have to suffer through that particular pain.  I tell myself it is like any other pain.  I hope my children do not break their bones, but I do not love them less or lose my faith if they do.  I hope that my children do not get sick, but it does not shake my faith when they do.  I hope that Sarah is healthy, and that she stays healthy.

Lord, strengthen me against my many weaknesses.  Let my heart reflect yours.  Give me the courage to face whatever comes, and the faith to place it in your hands.  Bless my tiny daughter, Sarah Catherine.  Thank you for this gift.  Help me to be a mother worthy of this gift of parenthood.

Since Love is Lord of Heaven and Earth, how can I keep from singing?

I guess I think in song.  Someone was singing that song yesterday, and it has gotten me thinking.  God is love.  He is in charge.  When I am powerless, I can either despair, or trust in God.  The first time I heard that song, I was at an abortion clinic.  I was a child.  It struck me with its message of a beautiful, faithful, strength.  As I watched pro-lifers being dragged peacefully off to jail in defense of the unborn, the song seemed singularly appropriate.  There is no evil, no power anywhere, that can stand against our Lord.

"What thought the Tempest round me roars,
I hear the Truth! It liveth!
What though the darkness round me close,
songs in the night it giveth.
No storm can shake my inmost calm,
while to that rock I'm clinging!
Since Love is Lord of Heaven and Earth,
how can I keep from singing?"

We went to Children's hospital yesterday.  We met with so many people, it was completely overwhelming.  It was a long an difficult day.  We had to get up earlier than I am used to, to be at the appointment ontime.  (DC traffic being what it is, we were late anyway.)  I had four appointments: an MRI, an ultrasound, a echo cardiogram, and genetic counseling.  The MRI was first.  (I fell asleep.  How does anyone not fall asleep?  They tuck you in to a little cacoon with as many blankets as you like, and your whole job is to lie still.  It is, admittedly, noisy, but after a few minutes I was used to the noise.)

The doctors were amazing.  Actually, the whole staff was amazing.  The technicians who actually gave me the Ultrasound and MRI were wonderful.  I had my MRI at 8 a.m..  At 2:30 p.m. I was in the cafeteria and the technician who had taken care of me came over to ask how I was doing, how everything went, and if I needed help finding my next appointment.  It was amazing to feel so human in such a large place.  I am not a chart.  I am not a number.

It was also nice to finally have some answers.  I know it has only been a few weeks.  I know that Sarah is still very small and getting the information, nevermind a diagnosis, is very difficult.  Still, it seems like it has been much longer, and I am not good with uncertainty.  Maybe that is one of the fruits God will grow from this pain; maybe I will learn how to handle uncertainty.

The doctors told the story of what they were looking at, and what concerns they had, from the top down.  The skull is a little bit misshapen.  The MRI showed a clearer picture than the Ultrasounds could, and it became clear why each doctor looking at the ultrasound had a different opinion.  It is slightly, not dramatically, different in a few different ways.  The radiologist thinks that there is fusing- that is that the bone plates have begun to knit together.  That can create problems for brain development, but so far the brain looks OK.  It is called Craniosynostosis, if you would like to look it up.

The lungs are the most serious concern.  They are larger than they should be, and the diaphragm is flat.  She, (the radiologist who was interpreting both the ultrasound and the MRI) believes that it is caused by fluid in the lungs.  That is not really a problem, unless it cannot get out.  If there is a blockage of some kind, than when the baby is born and has to breath for herself, she will not be able to.  I believe she called it CHAOS, but I will have to check on that.  Anyway, there are potential treatments, in the worst case scenario, but they are risky for both me and Sarah.

The heart echo also showed an abnormality, but it is less worrisome.  There is a vein (artery?) that brings blood from the umbilical cord to the heart.  Its normal path is through the liver, which slows blood flow.  Sarah's goes straight to her heart.  The concern is that it could stress her little heart.  It may not cause any problems at all, and it will be moot when she is born.  We follow up in one month to make sure the heart still looks healthy.

There were a few other minor things.  Taken together, the doctors are trying to find a cohesive diagnosis.  Their best guess now, which is not a diagnosis but truly a guess, is called Apert syndrome.  It does not fit perfectly, but nothing does.

The genetic counselor was very helpful.  She did not discuss abortion, as I feared.  It is really wonderful to have been so wrong about that!  She even asked if we had named our daughter yet, and thereafter referred to our daughter by her name.  When we met her, at first it seemed like she was giving a pop quiz.  We soon learned that her job was to make sure we had some understanding about what was going on.  She asked what the other doctors had told us, and whether or not we understood.  We discussed every piece of new information.  She paused every few minutes to ask if we had any questions.  When we left, knowing that we were sure to later have questions later, she gave us her contact information.  She made herself available to us, understanding that we kind of felt like deer in the headlights.  We were hit with a lot of information, some very difficult, all of it new, much of it medical, and we would need time to sort it out in our minds.

So, that is what we know.  It is good to finally feel like we understand what is causing concern.  We do not have answers, but we at least know what the doctors are seeing and why they are concerned about what they see.

We hear that knowledge is power.  Well, sometimes it is not.  Sometimes, it is just knowledge.  We know more, and we are grateful to the amazing doctors who were able to obtain and share that knowledge.  We expect to learn more still as Sarah grows.  But we are powerless to do anything for her, for now.   So, we trust in God, who is all-powerful.  We pray that He bless our tiny one.  Love is Lord of Heaven and Earth.

"O Most High, when I am afraid, in you I place my trust."
Psalm 56:4