hardening

I woke up this morning, 1, 3:20, 4, 5...but I forced myself to close my eyes. I will not think about this. I will not get up. I feel myself growing angry, trying to harden myself, trying to, to survive...

I open our pages, what have been my pages, and see that Brad has written for the first time. He is so sad. I fear being in different places. What if we handle this differently, what if we want to make different choices for our son? Will it tear us apart? What if I am not who he has always believed me to be? What if I am not who I have always believed myself to be?

And so I want answers when nothing is certain. And I start to rage inside. I don't want to be pregnant. I find myself trying to forget that I am. I wear bigger clothes to my kid's doctors appointments on Friday in hopes that no one will notice, oh please, no one notice or say anything. Will I fall apart the first time a stranger comments on my unborn child? And then I hear my voice changing. I remind myself of how many people have lost children, that we are not the first ones to go through this. You have to toughen up, Heidi, make it through...you can make it through this. All day yesterday I kept saying, "I just don't want to cry, not today." Will I start to say this each morning I wake up? Is it a good thing or a bad thing or as I said earlier, just survival? If I lose a piece of my soul will it really matter? Maybe it's just a piece that needs to be lost.

Oh Heavenly Day

We used to be huge fans of Smallville. Back when Ella was first born it was 'our show', but in recent years it has fallen off our tv show radar. A few months ago we caught a rerun from this season and remembered that one of the things we liked about it was the way they could always set up a closing scene with a poignant song that really captured a mood. In the episode we saw Lana was getting married to Lex and the Patty Griffin song 'Oh, Heavenly Day' was playing. It was a beautiful day with a gorgeous wedding and tons of cheering people, but the underlying sadness of Patty's voice captures the sadness in Lana that no one guesses because only she knows that she really doesn't want to marry Lex.

Yesterday was one of those 'Heavenly Days' as we had a beautiful birthday party for both Ella and Zane in our backyard. The day was perfect - beautiful weather, 75 degrees, a fall breeze blowing in off the field next door, and and tons of happy children darting to and fro with candy in their mouths and laughter on their lips - but behind it all was the underlying sadness that our son will never be able to be a part of a day like that. I struggled with the idea of having the party amid so much uncertainty in life, but 'normal' moments like that are definitely times that we need right now. To not withdraw from life totally has been a struggle. Last Tuesday we wanted to retreat from everything we were involved in, but that just leaves us sitting here thinkinig... which is sometimes good but often bad.

The Wood Song

The thin horizon of a plan is almost clear
My friends and I have had a tough time
Bruising our brains hard up against change
All the old dogs and the magician
Now I see we're in the boat in two by twos
Only the heart that we have for a tool we could use
And the very close quarters are hard to get used to
Love weighs the hull down with its weight
But the wood is tired and the wood is old
And we'll make it fine if the weather holds
But if the weather holds we'll have missed the point
That's where I need to go

No way construction of this tricky plan
Was built by other than a greater hand
With a love that passes all out understanding
Watching closely over the journey
Yeah but what it takes to cross the great divide
Seems more than all the courage I can muster up inside
Although we get to have some answers when we reach the other side
The prize is always worth the rocky ride
But the wood is tired and the wood is old
And we'll make it fine if the weather holds
But if the weather holds we'll have missed the point
That's where I need to go

Sometimes I ask to sneak a closer look
Skip to the final chapter of the book
And then maybe steer us clear from some of the pain it took
To get us where we are this far yeah
But the question drowns in its futility
And even I have got to laugh at me
No one gets to miss the storm of what will be
Just holding on for the ride
The wood is tired and the wood is old
We'll make it fine if the weather holds
But if the weather holds we'll have missed the point
That's where I need to go

Indigo Girls

Twilight turtle

I have a gift a dear friend gave to me when we found out we were expecting. I put it away so it didn't get destroyed before our baby arrived. It's a soft little turtle that projects constellations onto the ceiling as a night light. Ella and Zane thought it was the neatest thing. I thought is was significant since we called Ella our "little star" and Zane our "little turtle" - here it was a combination of both of them for our new little one. I pulled it out of the closet this morning, of course, tearfully. I think I'll turn it on for the kids tonight. It's called a "twilight turtle" on the box and that somehow seems appropriate.

Brad left this written on a note card for me today.
"The Lord is close to the brokenhearted, and saves those who are crushed in spirit."
Ps 34:18

Sad songs

Brad loves music. Ever since we first met, he’s been bringing music into my life. I sit down and see his iTunes list up and click play. It’s Mo Leverett from Desire Street singing about his own son he lost. His strange, scratchy voice tells me of the brief moments he held his son and that with God a day is like a thousand years. But then it’s Dave Wilcox that gets me – “You will always have what you gave to love.”

I’m up again but much earlier because I fell asleep on the couch at 8. I lie awake for an hour hearing this voice, my own voice, in my head. I wonder how long it will take for me to learn just to get up instead of waiting that hour, thinking, listening. I always dread walking down our unlit hallway. I feel like a child afraid of the dark. But as soon as I make it to the end, the blue moonlight washing our living room makes everything feel ok. What will I do when this full moon goes away and takes its light with it? I walk outside. The moon is higher than when I usually wake up and casts dappled light on the right side of our yard. My first thought is that it looks like a graveyard and then I’m surprised that I’m not creeped out. I sit and feel the wind and talk to my baby. I tell him that I’m sorry that this is happening – that I’m sorry his heart and tummy and brain aren’t quite right. I wish I could make it different…

Ella is in our bed tonight. I used to worry when they’d get into bed with us if they were forming a habit and so we’d try and carry them back to their beds. That seems stupid to me, now. I want them so close to me. I put my arm around Ella but she’s restless. She turns away from me. I smile and just accept that even in sleep we struggle with one another. I wonder why with Zane everything feels so natural and easy and with Ella it’s a constant search for the best way to be with her, towards her. Is it personality or birth order or gender or a combination of them all? I wonder what this little boy would be like if he were whole and made it to Zane or Ella’s age? I wonder how I would be with him?

I hear feet, strangely heavy feet…Ella is awake and has found me. She comes and crawls in my lap and says, “Mommy, I want to draw.” OK – and I don’t send her back to bed but welcome her light hearted company as she draws Peter Pan and traces animals and just talks away about being a fairy and about liking to be up with me – “just the girls,” she says. When she needs to go “potty” I don’t mind walking with her. The next room is much darker after the light of a computer screen. I willingly pick her up and carry her through the dark, hitting my own feet on the toys scattered about. If I feel this way about her, then I know that can only be a tiny bit of how God wants to carry me. But does Ella know how much I love her? Will I ever know really that God loves me like that? Don’t our children live in a blissful acceptance of our love – almost taking it for granted?

In the dark Ella asks, “Why are there two girls and two boys in our family?” Because that’s how God made us, Ella.

I’m almost through with Brad’s play list. They’re all sad songs; he’s always had a thing for really sad songs. But, now, they feel so right.

famine

Brad just left for work - I'm in tears - surprise. When am I not in tears? I thought I could be alone today but now I'm relieved that Jack called a friend for me and she will be here in 20 minutes. Sometimes I'm afraid to see people because I just wonder how many times I can cry? Or that look you get - that sad eye look that says I'm so sorry for you but I don't know what to do with you. Oh I've given that look so many times...
Brad wrote a verse down for me before he left. Ps 33:18-19 says, "But the eyes of the Lord are on those who fear him, on those whose hope is in his unfailing love, to deliver them from death, to keep them alive in famine." It's that last line - to keep them alive in famine that stuck out to him. Surely this is famine. And then I bitterly think, we've had our years of feast and now will it be years of famine? He prayed for us to have grace for the 27th. I keep trying to jump ahead to when this will all be over. I keep trying to find hope there and then the very minute, the very second I'm in overwhelms me. Jack said God's promises are for today. I need them today. I need to believe that if I hope in God's unfailing love that I won't be disappointed.
My family, my mom and dad and brother, are all praying for a miracle...for healing. After leaving home and finding our place in the PCA I kind of started dismissing so much of the theology I grew up with. But as I look out our front door I find myself asking if it is even possible. If I believe that God could heal this baby, could make him whole and perfect, how will I handle it if he doesn't? Is that when anger would kick in? Perhaps it's easier to believe that God can't really do that and then it's not his fault. This is the confusing part of my theology - that I say I believe but what does it do for me right now. How do I understand that God "allowed" this but that he didn't "cause" it - that he hates that my baby is defective? I need to see that this is the affect of the "fall" and to hate that, but it's all very fuzzy to me. Jack said that this baby would be made perfect, that he would beat us to heaven and be free of the suffering we live in down here. And that is beautiful to me, comforting somehow. Is that the miracle? Is that the healing?

The ditch

4:30 - awake for the last hour and a half. I wake up, haven't forgotten yet but there is a moment of calm before everything swirls back down onto me, into me. I realize I will love sleep more than I ever have before - for those hours I don't have to think about this. The thought that keeps screaming out in my head is that I don't want to do this. Oh, God, please don't make me do this. I think about Jesus praying before the cross. I wonder for the first time if he really didn't want to do what he did. I mean, I know it says he prayed for it to pass from him but I guess, well, I guess I never really attribute to Jesus real human feelings. Somehow it comforts me to know that he felt this horrible dread, too. That mabye he really didn't want to do what was before him just as I don't. But then he said, "your will be done" and I don't really want to say that. I don't know how to make it through this. I want to think of it as a dark tunnel, but even in a tunnel there is a road leading out of it. When Jack prayed last night, he talked about the ditch. I don't want to be in the ditch - you get stuck in ditches. What if I get stuck here? How will I ever get out of a ditch?

What to do?

So many of you care so much for us. I know you want to do something and I've heard a bunch lately "just let us know what we can do". The truth is that I don't know what to do myself let alone what to tell you to do for us. I just feel so lost...

I know how I've felt on the other end, how paralyzed with the fear of saying or doing the wrong thing. That's the other thing I hear alot: "I wish I had the perfect words to say to you." But there aren't any and I'm not expecting perfect words from anyone. Don't be afraid of me, of us, of this. If your heart tells you to do something for us, I promise I won't be upset. I think more than anything I just need people to act, to not wait for me to tell you what to do.

I do appreciate the beautiful flowers and notes and e-mails and phone calls. I can't bring myself to answer the phone just yet but your messages mean alot to me.

The morning after

Zane woke us up this morning squirming and laughing. He’s an early riser, usually 6:15 or 6:30 but he was kind and waited until 7 this morning I’m assuming because he was happily sleeping in our bed. He smiled as he sat up and reached over and turned on the radio. “Song,” he proudly said and to his credit at least it was a soft, lovely song instead of one of those terribly loud marches that NPR sometimes likes to use to wake up the world. Zane snuggled back in close to me, lots of hugs and kisses, and then, pop, back up he sits with that smile that gets him out of so much trouble. He throws himself over our bed to our feet and just starts laughing, and then roaring like a tiger. We can’t help but laugh ourselves. And as soon as I do I feel the tears again in my swollen eyes. Here it is, God’s grace, God’s mercy, right in front of us, living in Zane. When he was born we chose his name because it means God is gracious and merciful. How he is his very name this morning to us in our sorrow…

I want a name for this little boy that is meaningful too. Jack, our pastor, told me a story of a family that experienced this same thing with their first child and they named him something that meant “child of sorrow.” How very true and yet, I want a name that is beautiful, and light, and full of the promise of redemption.

Zane is “hungry” and so I must get out of bed. This, too, I believe is a grace. To have these two children who need me in a very physical way. Oh how many times have I complained about just that – about how much I am needed – about how draining it is? I wouldn’t know what to do without the little mundane tasks they require of me now. I get up and pull back one curtain, open the blinds. My normal morning task done out of habit takes on deeper meaning. I have to let the light in. I look our on a world just beginning to light up with the morning sun. It’s a beautiful day and I am grateful for it.

I feel my belly. When I sit down at the computer I pull my shirt up to look at it slightly stretched out. Not far from my belly button is a band aid from the amnio yesterday. I peel it off and wish that a band aid could fix what is wrong. Everything seems so…so… I don’t know, surreal, cliché…I don’t really know how to describe it. A band aid on my belly for this broken child…what do you do with that but cry.

The first night

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; the night will shine as the day, for darkness is as light to you.
For you created this little boys inmost being; you knit him together in my womb. I praise you because he is fearfully and wonderfully made, I know that full well. His frame was not hidden from you when he was made in the secret place. When he was woven together in the depths of the earth, your eyes saw his unformed body. All the days ordained for him were written in your book before one of them came to be.
…When I awake, I am still with you… Ps 139

Even to your old age and gray hairs I am he, I am he who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you. Is 46:4

The Lord is my shepherd, I shall not be in want. He makes me lie down in green pastures, he leads me beside quiet waters, he restores my soul. He guides me in paths of righteousness for his name’s sake. Even though I walk through the valley of the shadow of death, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever. Ps 23

How many times have I kissed his head, 10, 20 a hundred times? My sweet little Zane woke up calling me, “mommy, mommmmmy!” Normally I roll over and push Brad out of bed to get him. But how beautiful was the sound of his voice to me – how could I not go to him? Contentedly he nestled right into bed with me, curling into my chest. My tears start falling onto his golden head, some start to pool up in my ear. Here I am tonight with my boys, both of them nestled into me. My heart has never known this kind of pain and ache. I hurt with how much I love my Zane, with how beautiful it is to have him living, his breath warming me. And I love this other little boy also, and I tell him that. Is it all just in my head that I hear, “I love you, too, mommy”. I feared not being able to love something so damaged but here is my heart wanting to protect this life. I can hear myself asking today if it will hurt him to be born, will he be in pain? I want to keep him safe.
Just as my Ella and Zane are so beautiful to me, so precious, and certainly I’m feeling that more profoundly in these tearful hours, I also want this little boy’s life to be beautiful and meaningful…purposeful. I don’t want to waste the days and hours we have left with our three children. Oh, Lord, let there be joy somewhere in all of this. Let there be a celebration of life in the midst of impending death. Oh, God, help us…