Thursday, January 31, 2008


I had contractions all day yesterday. Sporadic, nothing that would make me start timing them but contractions nevertheless. I woke up in the middle of the night with terrible pain and wondered if this was it. But, here I am again this morning and everything seems to have subsided.

I have thought about labor quite a lot these days. It is so painful, so agonizing. I chose to have natural, unmedicated labors with both Ella and Zane knowing that even though it would be hard that it might be better for both myself and my children in the long run. In the midst of the pain I questioned all of that and realized you just had to get through it the best you could. I wonder if with Sully I will want to feel the pain - physical pain to match the torturous emotional pain of these past months. But then I hear my midwife's words, "you can't do physical pain and psychological pain at the same time," and I find myself agreeing. Sometimes I think I want to go in and be as medicated as possible - that I want to just sleep through it all and wake up to the words "it's over".

At our appointment yesterday we listened for a long time to Sully's heartbeat. It was different. Slower. After a while it did come back up to what it had been in the weeks past but things are changing. If this had been Ella or Zane, my midwife would have put me on a monitor to check the stress of the baby. She explained that a deceleration can happen normally but that under other circumstances it would have been closely monitored. I guess that is part of the ease of Sully. There is no stress or worry about fetal monitoring or fear of his demise. He is held so loosley in our grip, the past 20 weeks making us peel one finger after another off of his winged life. Open palmed we hold him knowing he will leave us when the days ordained for him come to an end.

Tuesday, January 29, 2008

When Dinosaurs Die

This is the title of one of the books we ordered a while back to help us in talking with our kids (particularly Ella)about everything with Sully. We haven't read either book with them yet but I had pulled it to the front of the desk and looked through both of them again as we prepare for the next few weeks. Tonight, Ella disappeared for awhile and when she came back into the living room she was carrying this book and asked us to read it to her. It had never crossed my mind that she would see it on the desk and want to read it.

So, we read through all of the explanations of what it means to be alive and what it means to be dead with friendly pictures of a dinosaur family in different stages of dealing with the subject. It's very straight forward in its childlike simplicity, leaving out all of the flowery terms we adults sometimes use to cloak death.

Ella and I were talking the other day and she, in her beautiful four year old way, offered me the sweetest of comfort. She asked me why I cried many times when I talked about Sully. I told her that it was because he was my baby and that it made me sad that he was not healthy and that I wouldn't be able to know him and love him the same way I knew and loved her and Zane. She nestled herself next to me in her pink costume and took my face in her hands and said, "Mom, I draw all those pictures for you to make you feel better. It's OK that Sully will die. He'll be OK." I wonder where that comes from? How can my four year old say those things to me? I just hugged her and told her thank you and how much I loved her.

So, tonight, when she brought me the book, I wanted to mention again about Sully and that soon he will come to us and that we didn't know how long he would live. I also needed to share with her about a family pet(her great aunts) that she loved that had passed away not too long ago. It seemed like she was handling everything with Sully so well, and now we had read this book, maybe this was the time to tell her. Before bed I let her know that our Aunt's dog, Georgia, had gotten sick and died. Oh it just broke my heart. She burst into to tears and just wept. She was so sad, and all I could do was hold her and tell her it was OK to be sad and OK to cry - all of the things we had just read so matter of factly in our book. I realize that losing sweet Georgia will probably hit home with her more than losing Sully will. After all, she has so many fun memories with her while Sully has been someone whom I have known more, whom I have carried. I think it made death more real to her though, and her own tears will help her to understand mine and Brad's when Sully comes and goes. But it makes me ache to even have to talk about these things with her. How unfair that death would already touch her sweet innocence.

Saturday, January 26, 2008

My Valentine

We had our now weekly appointment yesterday. I am 37 weeks, medically considered full-term. Within the next three weeks Sully will come to us. As a favor, our midwife was able to get us another ultrasound. I had asked if I could see him one more time in his safe, happy world before everything happens. Labor is hard on even healthy, physically perfect babies and while Sully seems to be strong enough to have made it this far, we don't know how he will handle delivery. So, to see him again yesterday was wonderful and also grounding.

In the past few weeks I've found myself daydreaming about Sully coming and everything being fine. I find myself thinking, how can he have made it this far and not be OK? Over and over the thoughts slip across my brain that maybe all of our tests were wrong. And maybe God has healed his heart by now. I just heard of a woman locally who delivered a trisomy 18 baby but somehow did not know before hand. I grasp at that and think, what if they gave me her test and she has mine? All delusions I know. And so, I needed to see Sully again. I needed to see again that this really is what is happening. Some people have called this hope - is that what my delusions are? Hope? I don't know about that.

So there he was, sweet boy. All the same things as before - nothing different. He's about 4 1/2 pounds now, very small for what he should be. A heart at this point should take up about a third of the chest. His heart is so big. It's almost fifty percent of his chest - maybe just because his chest is so small or maybe it is the imperfection of the heart. Nevertheless, even though it is so physically wrong, somehow, it is poetic to me. My Sully has a big heart. It seems so perfect, now, that he will come to us in February and that he will always be my Valentine.

Thursday, January 24, 2008

i carry your heart

i carry your heart with me (i carry it in
my heart)i am never without it (anywhere
i go you go, my dear; and whatever is done
by only me is your doing, my darling)
i fear
no fate (for you are my fate, my sweet) i want
no world (for beautiful you are my world, my
and it's you are whatever a moon has always
and whatever a sun will always sing is you

here is the deepest secret nobody knows
(here is the root of the root and the bud of the
and the sky of the sky of a tree called life; which
higher than soul can hope or mind can hide)
and this is the wonder that's keeping the stars

i carry your heart (i carry it in my heart)

e.e. cummings

Wednesday, January 16, 2008


We met last night with a woman that will be our case worker for a children's hospice group called Edmarc. She is incredibly kind and supportive. You get that just from talking on the phone with her. Nevertheless, I wasn't all that excited about having to meet with her for the first time last night. I guess it's all that it stands for, it's making preparation for what is happening and still to come. It was nice to hear her specifically voice that without any cue from me. She's obviously walked with a lot of people through a lot of difficult situations. Now her hand is extended to us...

I'm thankful this morning that we have put ourselves in their care. There is the promise of as much support or as little as we desire for the time being and then, if Sully does come home with us, 24 hour nursing care will be a phone call away. That's comforting to me, to know that I won't be alone in trying to care for Sully when I feel so helpless. For the second time in all of this I felt myself hoping for him to be able to come home. The first time was after watching the 99 balloons video.

This is a good place and a hard place to be. I'm grateful for the hope and desire, but I wonder if it will hurt even more to be given even more days with this little guy, to let my love grow even more for him before he leaves us. I think about the heights and depths analogy - that they go hand and hand and that you can't know the true heights without the deepest depths. I so often am willing to exchange the heights if somehow the depths could not feel so dark and deep. I guess it is my doubt that any joy could really balance out this sorrow that keeps walking us deeper into the valley.

Once again, I'm left in a place of just taking each day for what it is. I don't know what is going to happen. I can't bank on anything. So, I wrestle to wait patiently. I must trust that God is preparing me for what he knows is coming and that he won't leave me alone in whatever that is, however dark or deep.

If I go up to the heavens, you are there; If I make my bed in the depths you are there...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 like the day, for darkness is as light to you. (Psalm 139: 8, 11-12)

Friday, January 11, 2008

Frosted flakes and Sully's playground

I've bought a box of frosted flakes, the closest image to manna I've been given by modern interpreters. Even if I don't pour myself a bowl I look at the box and think about the manna given me for each day, each moment. I woke up yesterday with more of a sense of rest and peace than I've had for the past two weeks. "Manna for each day," I say to myself - becoming quite the mantra. I marvel at the calm within me especially after the incredible turbulence. I think about all of the people praying for us and am thankful. I open my bible and think again on the scriptures I've been holding onto for the past few days:

He will quiet you with his love. Zephaniah 3:17 quietness and trust is you strength. Isaiah 30:15

And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus. Philippians 4:7

...grant me a willing spirit, to sustain me. Psalm 51:12

That last one really gets me. A willing spirit. I think about Sully and the willing spirit God gave me to carry him even after the devastating diagnosis. Fear of what life will be like if he does survive, the fear of the demands, the fear of caring for something so desperately needy, the fear of knowing him more and still having him leave me, has been a great cause of the turbulence and tension in my soul these past few weeks. But, I choose to believe that just as God has given me grace to come this far that he won't leave me in the days ahead. And so I pray for a willing spirit and that God's own love would be what gives me strength in those future days - and for today, really, it's usually just for today that I can utter a prayer.

There is a tremendous bright spot in all of this for me these days. I can't even begin to tell you what a joy it has continued to bring me to plan and prepare for Sully's playground. I have been meeting and planning with a committee, and on Monday, we will take our plans to our church session for approval. If all goes according to plan, we hope that by late Spring we can begin building. I have been amazed at your generous hearts in wanting to be apart of this with us. Already just over $8,000 has been lovingly sent in to Sully's playground fund! Each time a gift comes in it sends such a message of love and care and support - I wish I could say something more than thank you. It means so incredibly much to us!

We've chosen a company called Miracle playgrounds - I just couldn't resist - it seemed such an appropriate choice. They have helped us figure out what fits best into our space and have sent us estimates for three options. Here is a picture of the option I think we will choose but with a few changes here and there (including color choice - I'll see if I can get the other options posted on if you'd like to see more). Sometimes, when I think of Sully being able to have more days with us, I think of how beautiful it would be if we could build this playground in time to carry him there, to have his little presence there with us even if it was just for a day. That image gives me courage for some reason. I don't know what the next few weeks will bring us, but I am grateful this morning for a willing spirit...

Tuesday, January 8, 2008

What is God asking of me?

I have a final to take this week for a class I didn't know if I'd be able to finish. Here I am, about to complete it. As I study, I am reviewing methods for counseling people and can't help but try to counsel myself. Last night I was struck by my own great need for defining what specific obedience looked like for me right now - in very practical terms - what is it that God is asking of me?

I am asked to wait. I am asked to trust him with Sully's days and my own. I am asked to come to him with my weakness and brokenness and be held by him. I have felt myself flailing in his arms but now, I just hang there, limp and tearful. What will you do with me God?

I have found the response to my last posting interesting. So much encouragement from so many, but also, I have received a few "worried" responses. Surprising to me. If it sounds as if I am turning away from God, I am not. If anything, I have turned towards him with my grief and anger and questions. Where else could I go with that? What else could I possibly do but throw myself at him? I have no doubt God will prove faithful and loving and compassionate. He is big enough to hold me in my fear and struggle.

As my due date approaches more strangers are asking about it. I have felt the recurring blow of that original Valentine's Day marker. It seems cruel but then I reconsider it all. When Brad and I decided to try for a third child we talked through all of the "inconveniences" of pregnancy and infancy. I have always found that first needy year quite hard, but we felt that what came after was worth the cost. We believed that each child was a picture of the love between us, a celebration of the union God had given us. And so, for love, we chose the inconvenience of another child. And then, how wonderful, our due date fell on February 14th! Our family would be complete with this last image of love in the flesh. I wonder now about all of this. Is it cruel to see those heart shaped flags and decorations in the stores now and on recently de-garlanded neighborhood doors? Will it always feel like such a stab in the heart? Or, is Sully still exactly what he was meant to be? Is he a much truer picture of our love, broken and incompatible with life but somehow tender and achingly beautiful?

So, here I am. I've shown up for one more day. Help me to trust you today, God. Prove yourself faithful to me.

Friday, January 4, 2008


I have not wanted to write the past few days. I have debated taking my thoughts to my private journal unsure of how I really am feeling would be received by just anyone who feels like reading this. Today, this is my space and I write the truth of my own experience allowing for my struggle and believing that integrity in revealing the reality of that struggle will be more valuable than saccharine words that are untrue.

I have been in emotional chaos, spinning since week 33. The weeks prior to this one actually seem "good" to me compared to this last week. I feel unanchored, tossing unmoored in a tempest. Who has let go? I wonder what I was hanging onto before? Was it really Christ? I have grown fearful the longer I continue to be pregnant. People thinking they are offering me hope and saying that Sully could live (fill in the blank for whatever random length of days seems appropriately hopeful to them)shatter my already broken self into a thousand more tiny pieces.

What do I mean? Don't I want Sully to live? I follow the red flag of my fear and probe into it. Here it is. Here is my heart. I am terrified of this baby "living". The longer he survives, the stronger his kicks inside of me, the more anxious I get that it will be what God asks of me - to care for an infant more needy than anything I could bear. Our pastor tells stories of husbands caring for invalid wives and parents loving children like Sully, and I know it is supposed to be a picture of God's love for me but I just think how unlike them I am. My love is so limited and I don't know if I could ever be as "good" as those stories. I struggle so much with my own weakness, with the weakness of my "perfect" children, with weakness in other people. To care for something so weak, to love something so weak, to be so weak myself will grind me into dust. Were the people in my pastor's stories just as limited as I am? What made them able to love the way they did?

And what of this loving God? I find it interesting that I question him now that he isn't following what I have deemed merciful. Isn't the fact that I must carry this child and lose him enough suffering? Shouldn't I at least be able to decide my own terms for bearing such a loss? I see that even in this misery I have set myself up as my own god in my heart. I still battle for control of the kingdom of my life and my loss.

Do I want this God, this mysterious and strange God that isn't playing according to my rules? I have begun reading Joni Eareckson Tada's When God Weeps...interesting reading for anyone but especially in the midst of suffering. I have ignored her warnings to readers that perhaps should lay the book down for a time if they are "reeling from unspeakable loss, choking on the bitterest pill, heartsick beyond comforting and unable to look upward". I plow through anyway because I believe what they tell me on the back of the book - that they will "probe through the glib answers that fail us in our time of deepest need." That they will "reveal a God big enough to understand our suffering, wise enough to allow it - and powerful enough to use it for a greater good than we can ever imagine."

And that's where I am right now - in the "wise enough to allow it" part. What strange doctrine to be sorting through and how many truly "glib" answers have I loosely let satisfy me for so long. And even stranger to me is the anchoring I feel when I do say, OK God, you have placed me where I am. You have given me this baby with Trisomy 18 and you have called me to struggle as his mother. I remember the comfort of Psalm 139 about God knowing his length of days and forming him in my womb - God knew - God allowed - God, yes, this God I say I believe in, let my child be created with his faults. Medically it is the most unlikely odds that we would have a child with this abnormality, but as I read I am pondering that truth may be that it is God who controls even the odds and "coincidences". He is bigger than I have believed him to be. If Sully lives any number of days, it will have been ordained by God. It will not be a surprise to him but His will. This seems so bitter, but for a moment the spinning stops and I find rest. I don't get it, but my heart is desperate for peace...

Tuesday, January 1, 2008

January 1, 2008

A bruised reed he will not break, and a smoldering wick he will not snuff out.
(Isaiah 42:3)

As a father has compassion on his children, so the Lord has compassion on those who fear him; for he knows how we are formed, he remembers that we are dust. (Psalm 103:13-14)

The Lord longs to be gracious to you; he rises to show you compassion. (Isaiah 30:18)

It has been granted to you on behalf of Christ not only to believe on him, but also to suffer for him. (Philippians 1:29)