In Which I Appease My Public, or, I Never Said My Blog Posts Would Be Short

All right. So enough people (3, I think?) have suggested that I have a blog or a column or something, that I am giving in! This way, when I want to write something I’ve been thinking about and it happens to be controversial in nature 1) I can think about it for a few hours before posting and 2) anyone who doesn’t like what I have to say can just not click on the link!

This blog, which I started 6 years ago, was originally intended to be about my family and our experiences with a medically fragile, disabled son. I am sure I will write about that sometimes. But as life has rolled on I have begun to feel helpless and mute on the subject, as Cody’s physical life has deteriorated. Like what is happening is too big and too horrifying and too beautiful and too precious for me to comprehend, or for language to express. So my theme will have to change for now.

What will I write about? Well, mostly I guess it will be sharing the evolution of my thoughts on what life is supposed to be. I asked God once, “Please show me what You say life is to be. I don’t want to know what anyone else says.” That was about 14 years ago. And He immediately began to erase all my ingrained assumptions, about Himself in particular, and rewrite life for me. I don’t write because my thoughts are particularly profound, but I find myself in an extended place of intense change in my beliefs about the relationship between God and humankind, and the way the world was designed to work and the way it does work, and I want to share my struggles and wrestlings and revelations.

Today I met a cashier at Wegmans, who was wearing the hijab (is it “a hijab,” or “the hijab,” or just “hijab?). I said, “Can I ask you a weird question?” She answered, “OK . . . ,” looking a little nervous. “Has anyone given you any trouble about wearing the hijab?” Her face lit up and she said, “No! Not in Charlottesville. I am afraid to move to any other city because it has been so good here. On the day after the election, I even had some strangers walk up to me and hug me and tell me they were sorry and that they were glad I am here.”

Like an idiot I didn’t take note of her name. She is from Indonesia and has been here for twelve years. She has had/is having trouble with her immigration papers but will hopefully get them sorted out. She likes working at Wegmans because they encourage diversity.

As I have processed the conversation I have had many thoughts, one stacking on top of another:

First I thought how proud I am to live in Charlottesville (not that's perfect, mind you).

Then I thought about how beautiful she is. Really, the most beautiful, friendly, sparkling eyes. She seemed so happy to engage, so comfortable in her skin and so joyous. I will always go for her register when I get the chance.

And then I thought of how differently I was taught to perceive someone like her in the religion in which I was brought up. I believe I would have been afraid of her, not as a terrorist or anything like that, but as one of “them.” Not only a non-believer, but a believer in a false religion. Someone who was wrong. Someone who was dangerous. Someone with whom I should be on guard because she had gotten it all wrong and was a lost soul. I should tell her about Jesus, but I should be guarded about  a relationship with her because she could drag me down. Someone I should see as worthless, because I was worthless before I found Jesus. But if she believed in Jesus, then we could be best friends. Then I could “disciple” her and lift her up to my level of knowledge and teach her how to be a “good Christian.”

WHAT THE WHAT!?! How did I ever read about and learn about and talk to Jesus and think that this was how He sees this beautiful, sparkling human being made in His image? Yes, we humans have lost our unity with Him, have separated ourselves and have tried to figure out our identity and how to “do life” apart from the Beautiful One who made us for the sole purpose of living in unity with Him, submersed in His Love, Joy, Peace . . . . And yes, that Aloneness makes us do and say terrible things, scrambling over one another, not caring who we step on to find our sense of acceptance and significance in this world. But though we may not percieve Him, He has never, ever left us.

“Where can I go to flee from Your Spirit?

Where can I flee from Your presence?

If I go up to the heavens, You are there;

if I make my bed in the depths, you are there.

If I rise on the wings of the dawn,

if I settle on the far side of the sea,

even there your hand will guide me,

your right hand will hold me fast.

If I say, ‘Surely the darkness will hide me

and the light become night around me,’

even the darkness will not be dark to You;

for darkness is as light to You.

For You created my inmost being;

You knit me together in my mother’s womb.

I praise you because I am fearfully and wonderfully made.

Your works are wonderful, I know that full well.”

Psalm 139:7-14

Christian, we are free! We need not be cautious and fearful and self-protective! We, who have believed in and accepted God’s freedom from the curse of separation with Him, we are free to love on and tell everyone else that they are included, too! To be friends and have relationships where we just delight in who they are! We need not fear that somehow we will be compromising ourselves or our faith, if we reach out a hand and tell our Muslim or (insert person of different belief) neighbor that they are beautiful and acceptable in our eyes, and in the eyes of God. I could dance and sing for joy in the relief of knowing that I was never worthless, and no one in this world is worthless. That I am free to see my Muslim friend as God sees her - as gorgeous and wonderful and worthwhile. There is so much joy in that! Confused, lost, separated as one might be, God has never really left the side of any one of His creations, and will never, ever stop pouring out His love and mercy on every human.

Can the nature of God be changed? We don’t have to believe Him. But He Himself says that He is Love.  

On the Flip Side: From Death to Life

So, it has been a while. Cody was born just after my last post, and he had his 2nd birthday last week. There has been little time to catch my breathe in the last two years, which have included 11 surgeries for Cody, a total of six months spent in the UVA children’s hospital, and, in many ways, far more difficulties than we could have ever imagined. Though I have not really thought about it this way until recently, the last two years have been spent trying to keep Cody alive. The severe hydrocephalus that began in the womb has caused problem after problem to arise, requiring multiple brain surgeries and shunt revisions, and two life-threatening bouts of meningitis. Secondary to this has been multiple fights with pneumonia and RSV. This sweet, perfect little boy has a body that is broken and scarred, and, barring a supernatural intervention, one that  will not survive this harsh world past toddlerhood.

We found out in October that, as a result of his struggles with meningitis, Cody has two cysts in the cervical area of his spine - pockets of fluid that are no longer draining the way they would in a healthy brain. These cysts are growing, and putting pressure on vital areas of the brain. Already his vocal chords have become paralysed and he has a tracheostomy to keep his airway open. Eventually, Cody will lose his drive to breathe. And then, one day, his heart will stop beating. There is nothing to be done.

Most of you have either met Cody, or have seen all my facebook posts about what a miracle he is. He is the happiest baby I have ever encountered. When he was tiny I used to ask the doctors if something was wrong with him, he was so happy. He loves his family. He loves his life. He loves to play. More than anything he loves to be held and snuggled. He nuzzles his little face in my neck and keeps it there for moments at a time, just feeling me breathe and letting me kiss his little cheeks. He is a beautiful child - big brown eyes, curly brown hair, pink cheeks, and the longest eyelashes I have ever seen. He smiles constantly, and loves to play peek-a-boo, or “uh-oh” when he drops his toys on the floor. He loves his brothers and his dog. He is a favorite of the nurses and doctors in the hospital. Even at his sickest, he rarely cries. He is learning a little bit of sign-language (he can no longer vocalize), and his first sign was “I love you.” His second was, “Mommy.”  

All the doctors agree that he will not live much longer.

I have been thinking a lot lately about life. About what life is, and what makes it worthwhile. So many of us struggle to find out what we are supposed to “do” with our lives, and what we are supposed to “be.” We measure our worth by what we accomplish.

I have found my purpose in life in the last two years. Right now, my purpose and my job are very clear. Aside from taking care of my other two children and supporting my hard-working husband, my job is to keep this little boy breathing. Much of my day is spent in making sure that he will survive until the next day, the next week. Keeping his trach clear so that he can breathe. Keeping his trach clean so that he doesn’t get infected. Maintaining and cleaning his equipment. Administering his medications to keep his bladder working, to keep his lungs clear, to make sure he doesn’t have seizures. Setting up his feeding regimen. Taking him to the doctor. Helping him do physical and occupational therapy to keep him comfortable and moving as well as possible. Sitting with him for hours upon hours in the hospital, making sure that he gets everything he needs, that the doctors understand all of his issues, that the nurses know what to do and when. Making sure that he gets enough cuddles and love and entertainment.

And what is the end of all this? What am I working toward? What will I be able to look back on and say that I accomplished at the end of this life?

Nothing.

Now stick with me here. I am not depressed or giving up. There is another side to the story. Hear me out.

The end result of all my days of work will be nothing. This child, for whom I am giving much of my life, will die. I cannot fix him. I cannot extend his life. My life’s work (for this time at least) will come to naught. Years of hours “wasted,” not mention hundreds of thousands of dollars, meticulously spent on a little body that was born into this world too broken to survive. In the terms that we tend to measure our lives, mine will be wasted.

But this is where joy comes from: that the worth of my life is not measured by what it will accomplish. For, will not all our lives come to nothing in the end? We will all be forgotten on this earth, no matter what we accomplish. And the best works that are ever written, the most beautiful and functional buildings ever built, the most prosperous and democratic societies, all will crumble, as time marches on. The children, the work, the art that we pour ourselves into will all die, decay, come to naught.

My worth is measure by how much I am loved.

Cody will not be here for long, and in his short life he will accomplish nothing. He can’t sit up. He can’t talk. He can’t walk. He can do nothing for himself, much less for others. But he is loved beyond all measure. All who encounter him, and many who have only heard of him and will never meet him, adore him. He is worth more to us than any amount of money, or power, or accomplishment or praise. And all he has to do to merit all this love? Exist.

We are all born broken. All. And we are taught by our world that in order to find worth we must accomplish something worthwhile, something tangible, something that will last. We must work to fix our brokenness and build something that will be remembered. But all of our works will fade, and all our good deeds will come to nothing in the end. Only Love makes us worthwhile, and in the end, only Love will remain.

Your Father, the one who made you, loves you. From the moment you were born,  all you had to do to make you the most important being in the world to your parents was to exist. And from eternity to eternity, all you have to do to gain the absolute joyful adoration of your Father is to exist. Those moments of unearned love from our parents are the ones we do not remember. As we grow older, imperfection intervenes, and the next time we experience that love it in all its purity is when we hold our own helpless babies in our arms. But when Jesus said, on the cross, as He endured the ultimate pain for our sake, “it is finished,” He meant it. He MEANT it. Your sins are forgiven and you are free to enjoy your Father’s love forever. THERE IS NOTHING YOU MUST DO.

I have learned, while watching my little son, that I need never again wonder what I must do to make myself worthwhile. All I have to do is exist. And bask in His love! Roll around in it! Swim through its depths! Know that, whether I have done good deeds today or not, whether I have read my Bible or not, whether I have been a good mother or not, whether I have accomplished something or not, whether I have even thought of God, when I lay down at night I can feel His arms wrapping around me, and hear Him whisper, “my darling, you are beautiful,” simply because HE LOVES ME. Because He made me. Because He leaped across death to save a life that is weak and helpless in itself, but that is worth more than anything to Him.

Does that mean that I will lay down and do nothing, because nothing is required of me? No! It means that because I am secure in His love, I am free to wake up each morning and live the life He has given me, regardless of what results I see. I get up, and I do the next task in front of me with JOY because I want more than anything to care for my son. To not take care of him would kill me. Each act that I do to care for Cody is an act of unbridled love, which I do, not for the results, but simply because I love him. And though my life and Cody’s life will accomplish nothing, God will accomplish so much through us. Our works will come to naught, but through us, He will do His good and perfect will. I will never know the lives that will be touched by the simple existence of my sweet, happy baby boy, or through the acts that I perform only because I love him. Through his life and through his death, through my life and through my death, God will make miracles happen. And all I have to do is live.

When we moved from North Carolina to Virginia, we left a church there that had become, in one short year, a true family. On our last Sunday they threw us a goodbye party that ended with prayer. After we prayed, one of my good friends, Jennifer Cox, gave us a message. She had seen a picture in her mind of Andrew and I sitting at a table with a big photo album in front of us. We were turning the pages backward and looking over our past together. She said that we should always look back and remember how God had been faithful to us through all our years. At the time I was thinking, of course, of the challenges of medical school. I was pretty much scared stiff about what lay ahead, especially after hearing things like, "get ready to be a single mom."

I have not always been good at looking back, and I have been extremely discouraged through most of this pregnancy. I have even gone back to the question that seems to haunt my life: I know that God loves me, but what if His love only means a life of painful "lessons" designed only to make me "good?" That idea has never been enough for me. Lately, when looking back, I have only seen the pain that I have been through, and the future has looked black with possibilities of pain of the worst kind. If I had written a list of the worst case scenarios, it seemed like God was going down that list and checking them off one by one.

As always, my view of my life hinges on my view of who God is, and if I couldn't believe in His true goodness, if I could only see Him as an overly-authoritarian father-figure who is going to "keep me in line," how could I have hope?

Then I read Psalm 91. I have read it many times before, and even spent a week memorizing it during youth camp one summer with a good friend, but it somehow didn't seem relevant right now.  I don't even know why I read it.

I came to the verse that says, "A thousand may fall at your side, ten thousand at your right hand, but it will not come near you." This didn't make any sense at first - it seemed like the battle was very near me, and about to destroy me. But I started looking back again and seeing that, though in many cases my worst fears were realized, God, in His compassion, had so eased the difficulty, that really only my fear had hurt me. My husband was sent to war. Definitely a worst fear. But he was back within three months, unharmed. Medical school so far has not resembled single-parenthood in any way. And there are so many others things that have not been what they could have been.

So, as we get close to Cody's birth in just a few days, I am much more excited than fearful or anxious. God has promised me that "it will not come near" me, and His promises are always true. I don't know how that will work, but I believe that this will not be the worst case. From a medical perspective, there is a chance that Cody won't survive even one hour. I don't know that this won't be the case, but I don't believe it will be. I believe that God has given us a beautiful son who, whatever else may happen, will know how to love and be loved.

"He who dwells in the shelter of the Most High
Will  rest in the shadow of the Almighty.
I will say of the Lord, 'He is my refuge and my fortress,
My God in whom I trust.'

Surely He will save you from the fowler's snare
and from the deadly pestilence.
He will cover you with His feathers,
and under His wings you will find refuge;
His faithfulness will be your shield and rampart.
You will not fear the terror of night,
nor the arrow that flies by day,
nor the pestilence that stalks in the darkness,
nor the plague that destroys at midday.
A thousand may fall at your side,
ten thousand at your right hand,
but it will not come near you.
You will only observe with your eyes
and see the punishment of the wicked.

If you make the Most High your dwelling--
Even the Lord, who is my refuge--
then no harm will befall you,
no disaster will come near your tent.
For He will command His angels concerning you
to guard you in all your ways;
they will lift you up in their hands,
so that you will not strike your foot against a stone.
You will tread upon the lion and the cobra;
you will trample the great lion and the serpent.

'Because he loves me,'  says the Lord, 'I will rescue him.
I will protect him because he acknowledges my name.
He will call upon me and I will answer him;
I will be with him in trouble.
I will deliver him and honor him.
With long life will I satisfy him
and show him my salvation.' "

Psalm 91

Three weeks from today my little guy should finally be here.

So this is how it is supposed to go: Cody is scheduled to be delivered by c-section on January 19, 2010, at 9:30am. We will get to see him for a minute or two before the doctors take him to be evaluated. Sometime in the first 2-24 hours he will have 2 surgeries: the first to repair the defect and the second to place the shunt. Then he will be in the NICU for a week or so, while he recovers. We won’t be able to hold him while he is in the NICU, but he will be in an open-air bassinet, so we should be able to touch him. Visitors are welcome J  (as long as they are not sick). From there he will go to the Intermediate Care nursery, to work on eating on his own (without a gastric tube) and other issues. There are rooms in the Intermediate Care nursery where we will stay the last couple of nights for a “trial run.” We will take care of Cody in our room, as if we were at home, but still within easy reach of any help.

Then we will take him home. He will have to go home in a special car-seat in which he can lay down, as he will still not be ready to be placed on his back. From there we will begin physical therapy and dealing with strong possibility of shunt malfunctions and infections, especially in the first two months. In those cases the shunts will have to be replaced. Any time Cody has a fever, is lethargic or sleeping more than usual or more irritable than usual he will have to go the hospital so that they can evaluate his shunt. And all this is just the first 8 weeks of his life. Whew – so much to think about, and so nearly impossible to keep from thinking about it!

I haven’t posted in quite a while, not because I have been too busy or lazy, or because I have forgotten, but because things have just been too difficult for me to want to write. The last few months have been a dark place. The anticipation of what is coming has been torturous, and I’ve never been good at controlling my thoughts, or at “positive thinking.” I have not been anticipating the worst, just anticipating. I can’t wait to see my little one, but I am still grieving the lack of “normalcy” that this birth experience will involve. Meanwhile, my self-imposed bubble of ignorance about what parenting a child with spina bifida will entail has been slowly disintegrating. The bubble was a good thing – why would I want to be inundated with overwhelming information about which I can do nothing? But as the time has approached to start educating myself on what the first bit of life with Cody will be like, I have been completely overwhelmed. 

A couple of days ago we had our 4^th ultrasound. The news is not good. Cody’s hydrocephalus has become quite sever in the last few weeks. What doctors like to see in measuring the size of the ventricles is a width of 10-12 mm. Cody’s ventricles have gone from 14.5 mm at our first ultrasound, to 39 mm. This means that a shunt will need to be placed immediately after he is born. It also means an increased risk of brain damage. There isn’t any direct correlation between ventricle size and amount of damage to the brain, but when the ventricles measure over 15 mm, the chance of damage presents itself. In some cases it is severe brain damage. We won’t have any idea how much damage there might be until he is older and meeting or missing milestones. This frightens me more than any physical damage could do. I want my child to be here, to be present. To be able to smile and snuggle and talk and play, like my other children. I don’t know what I will do if that is not the case. The idea simply brings me to my knees. And please don’t post any truisms about one’s knees being the best place to be because that is when we are forced to trust God. That might be true, but I don’t want to hear about it. What I mean is that the thought devastates me.

With the coming of Christmas season I have been thinking a lot about Mary. I mean this in the most humble way possible, but I think I may know a little bit about how she felt in anticipating Jesus’ birth. It must have been very frightening to be travelling so far from home when 8-9 months pregnant with her first child. She would have had no idea when and where that baby would come, and if there would be help available to her if she needed it. I have been on partial bed-rest for several weeks now because of pre-term contractions, so I have some idea of what that daily uncertainty is like. And travelling on a donkey! Any woman who has been pregnant can imagine the agonizing discomfort that would have caused. On top of this, the knowledge that everyone knew she was pregnant before she married, and the stigma associated with this.

And then there was both the knowledge and the lack of knowledge about what Jesus’ future held. She knew that she was carrying the Messiah, and must have had some hint from prophecy of how his life would go. This would be overwhelming in itself. But how could she know what the day-to-day challenges would be in raising God’s Chosen One – His Son? Unless she was a much stronger woman than me, she must have struggled with a great deal of anxiety. And yet, what choice did she have but to believe in the words of the angel, that she was “highly favored,” that God had chosen her for this task?

I think a lot of my struggle in the last few months, and the cause of my wavering faith and feelings of despair, have come from a mistake in what I am trusting in. I have been trusting in my beliefs about Jesus, instead of trusting in Jesus Himself. When I try to fit this situation into the framework of what I believe about how Jesus uses and orchestrates our circumstances, I get a bleak view of life, and one that, really, if I look at it logically cannot be explained away. Hence my inability to “think positive.” When I pick my beliefs apart with logic, the conclusion I come to is a pretty infallible argument for the meaninglessness of suffering. 

But when I just believe in Jesus, with blind faith (that’s right, I said blind faith. What else can one have when the future is a complete, uncontrollable and frightening unknown?), then hope comes. Without which hope life is unbearable. I can’t explain why, but I know that it is true:

“Turn your eyes upon Jesus,

Look full in His wonderful face,

And the things of earth will grow strangely dim,

In the light of His glory and grace.”

  

I mentioned in an earlier post that we have a lot to be thankful for already:

Andrew is in medical school, which means that he understands a lot of what is going on, and is on the inside at the hospital. He can interpret a lot for me, and this is so reassuring.

Andrew's rotations have somehow been less demanding than usual. The residents and doctors he is working with have been very understanding about letting him leave when something is going on. One day we had appointments scheduled for the whole morning, and Andrew was in his surgical rotation, which is the most demanding of all. He was planning to come to our appointments anyway, but he didn't even have to ask for the time off - a surgical conference was in town, and he had the day off!

Andrew had already been through his pediatric and obstetrical rotations when we found out about Cody's diagnosis, which means that he has already worked with most of the doctors we are dealing with. The doctor that interprets our ultrasounds every month was actually Andrew's preceptor (sort of a mentor/boss) during his OB rotation. I don't know what kind of care other people get, but I can tell you that our care has been excellent so far. We have even had a doctor stay late after work to meet with us and answer our questions.

I have already had two c-sections. This might not seems like such a blessing, but since this one would have to be a c-section anyway, it means one less scary unknown. C-sections aren't fun, but at least I know what to expect. And, again, Andrew's knowledge this time around has helped to explain some parts of the procedure that were particularly scary.

Living about a two-minute drive from UVA, the best of everything is right at our doorstep. This especially includes the spina bifida clinic, where all the resources are in one location. A lot of people would have to drive for hours to get to one.

We have extremely supportive family, who are willing to drop everything to be here when we need them, for as long as we need them. 

Because Andrew is in med-school and I stay at home, the boys and I are on medicaid. This means that every single medical need that any of us has is covered. All of Cody's surgeries and care will be covered with no co-payments at all. What an unimaginable relief! I watch enough TV to know that not everyone can just sit back and relax about medical payments.

I have always been a pretty negative thinker, but somehow with this (on most days), I can see the positive. That in itself is something to be so thankful for - there is no way I could just change my personality and see things differently through self-effort. I know, because I have tried. I only know one Person who could make a change like that in me.

Lest I start to sound too perfect . . . I am having a really sucky day today. I have a terrible headache, and I am completely peopled-out.

I had to take the boys to the doctor today for flu shots and Austin's three-year-old check-up. Turns out that Austin has to have surgery to repair his herniated belly-button. Lots of kids are born with them (Jack was), and they usually heal up on their own, but Austin's didn't. It is really a no-big-deal, non-invasive surgery - possibly even outpatient, but still. Seriously, life? Seriously? The poor kid has already had rabies treatments this year, not to mention everything else that is going on. I really don't feel as sorry for myself as I sound - I know things could be so much worse. But I am not coping real well with anything today.

Jack and Austin's school pictures were yesterday, and I didn't find out till today that you have to pay for them ahead of time in order for any pictures to actually be taken. So Austin will have no school picture for his first year of school. Really stupid thing to be upset about, but I cried all the way to Lowes after I dropped them off. Jack's first school picture is so precious, I hate that Austin won't have one.

All of this is the worst thing about our situation for me right now. Having to wait 4 months between finding out about Cody's diagnosis and actually dealing with it. The day-to-day stuff is just unbearable sometimes. I have this huge thing looming in front of me, and I have to deal with tantrums and poop and picky eaters and nightmares and permission slips and dishes and headaches . . . . It sucks sometimes.

To top it all off, pregnancy seems to have inflamed my carpal/cubital tunnel syndrome till it is worse than its ever been, and I can't knit at all. I almost can't even cut my food or wring out a dishtowel. So, I have no outlet or interest to give me a little bit of fun and a feeling of accomplishment. I didn't knit last week, and it didn't help at all. I feel like a zombie.