Where is the mercy?

The past few days have been incredibly hard and emotional for me. Christmas has come and gone and now I am left to face dismal January days and the death of my third child. I scrutinize my thoughts and find myself not as I believe I should be. I am ready now. I am ready to let go. I am ready to face what seems the most difficult thing I have ever faced. The agony of waiting is wearing me down. I wonder how much lower I can get? And, then, of course, comes the guilt for feeling this way.

It just seems to me that God, if he isn't going to heal this baby, that it would be merciful of him to go ahead and take him. Why all of this waiting? Why all of this suffering? I see how I truly think of God. I am ready to let go but because I am ready he is going to make me endure all 40 weeks of pregnancy, because I must not have had enough yet. He is cruel to me in my thoughts today. He is unkind. He is unmerciful. For the first time in all of this I have cried out, "Why? Why us? Why my little boy? Why are you doing this?"

And then, I wonder, in a brief, flickering moment, if perhaps it is God's mercy that he is making my heart ready to say goodbye. Perhaps I should stop seeing it as an indictment against my motherhood and more a mercy that I am being made ready to do the impossible.

Winter Solstice

Today is the darkest day of the year. The night will be longer and the light shorter than any other day. I think of this as Ella and I go to her advent calendar and pull the treat from the 22nd and place a little bird on the tree. I wonder what this Winter Solstice will hold...

This past week I've indulged myself by watching Christmas movies late at night. I've never thought of "Little Women" as a Christmas movie before but Christmas does come and go several times in it. Finding it strangely comforting, I've watched it over and over the past few days. I sobbed as I watched Beth, the third daughter, get sick and almost die. But then her Marmee comes to her and brings all that a mother can to her child and miraculously, Beth lives. But in the end, even Marmee, the epitome of a good mother, can't keep Beth from going on before them.

Then there is "It's a Wonderful Life". I remember teachers letting us watch it around Christmas time in middle school and thinking it the dullest of movies. It's definitely one of those movies appreciated more by adults perhaps because they identify more readily with the letting go of dreams and with life not turning out as expected. I sobbed this time at the end, when the whole community turned out with pockets full of pennies and dimes and dollars to help save the Building and Loan and this man who had cared for each of them. I cried because it made me think of Sully's playground and of the beautiful response to it. Already just a few generous hearts have donated over $1600 to making it a reality. And Sully is just a baby, unable to do anything for anyone, making it all the more miraculous to me that these hearts would open up and give to him. And, I cry, too, because, like George Bailey, life is not turning out according to my own dream. It is heartbreakingly poetic.

As I watch, I work on Sully's blanket. I've made one for each of my children and now Sully. The others are bright white while winter white seemed a better choice for my little Sully. I've started it three times and finally am coming close to completion. I've never begun something over that many times, but this felt like it had to be just right. Pulling out the chains from the other beginnings had to be done. This blanket will be the one that holds my little boy when he comes. It has to be right. I will finish it in time for Christmas giving Sully another gift under our tree. Ella has placed the first one there, a soft bear she thought should be his first lovey.

Sully, too, will give gifts this Christmas. Sully will add a special book, a story of two brothers, to Zane's leather bound collection begun on his first birthday. It is a story by one of Brad's favorite Western writers whom he read avidly as a young boy. And for Ella, Sully has a lovely little necklace with a delicate gold heart on the chain. I brought home several choices, but when Brad saw this one he knew it was the one. The heart doesn't hang perfectly centered but tilted, like Sully's own sweet little heart, physically imperfect but full of love, I believe, for Ella and Zane.

The light is fully upon me now. The day has begun. How will I walk through these hours knowing that the light will leave so quickly? That the darkness will come more rapidly than any other day of the year?

Knowing Sully

Who is Sully? I find myself trying to sort out his personality in these days when I can feel each kick and move. What does each one tell me about my youngest son? I try to decipher who he is even now. I was talking with a friend the other day about how you can see distinct characteristics of each child's personality even in utero although you don't realize it until you watch them later and look back on it. Not knowing how much of a "later" I'll have with Sully makes me want to grasp on to something that is distinctively him right now.

From our ultrasound we know flaws but also sweet pieces of information. He is, of course, much smaller than he should be, 2 pounds 10 ounces as of last week, only the 4th percentile for weight. But, he likes to move about alot and even when he was calmer wouldn't cooperate for a 4D picture for us. He would give us a glimpse of his face but then turn it before the tech could get the shot. Perhaps he's a bit camera shy? Or was he mischievously teasing us? He was positioned diagonally across my belly with his head under my left ribs and his heels aimed right at my bladder. That, I have certainly been feeling. This past week he has made sure I was aware of every single kick of his sweet legs, aware of how very full of life he is right now. And his feet, we have a picture of his feet, so small but lovely in their formation. They don't seem to be "rocker bottom" feet as many of these babies can have.

But it is his face that I love the most. No, we have no pictures to share as I said earlier but Brad and I glimpsed his face in 4D, a truly precious and beautiful face. He has perfect lips, lips just like my Ella and Zane, lips that I will want to kiss. And his nose is a lovely little button nose also like my other two dear ones. He really is their brother, bearing a resemblance to them in so many ways. I hope I will always see parts of him in each of my other children.

Ella drew this picture of Sully a few weeks ago. It is just a portion of the entire drawing which spans 4 pieces of paper all taped together in a 4 year old fashion. She wanted to do a "portrait" of him in my belly and has hung it in Zane's room which should be shared with Sully (according to her). I love that all of the faces circling my "belly" are smiling - I'm assuming she believes Sully to be a happy baby. I also love that the "belly" looks more like the shape of a heart and is surrounded by hearts - a loved baby. I could interpret more but perhaps I will let Ella's drawing of Sully speak for itself...

A warm day in December

This week I've received several gifts for Sully. It's strange to not know what to do with a baby gift. Will I pack everything away into a special box and open it from time to time after all is said and done? One suggestion was to pass the sweet little gifts on to Ella for her to use with all of the things she cares for around here - her chick, and owl, and 3 dollies, and Silver Wind the bouncing horse. Somehow it seems right for her to have these things of Sully's. After all, she looks after him so well even now. They would be such treasures to her.

One of my friends sent me bulbs to plant. Deep purple tulips for Sully and daffodils, my favorite, for me. The unseasonably warm day yesterday came at just the right time for Ella and I to take our hand shovels outside and plant them together. I looked all around the yard for the perfect place. I couldn't put them in the backyard. If we ever move I still want to be able to drive by and hopefully see them. And then I looked at Ella's cherry tree and knew underneath it was where Sully's tulips should grow. Her tree, planted the first Spring after her birth, has grown so beautifully. It seemed right for these delicate flowers that fade so quickly to blossom each year in remembrance under it's strong and graceful limbs. It felt good to put my hands in the earth, to plant something in the middle of December, to sit beside my daughter as she covered over each bulb and happily talked about Sully.

Answers

Answers, clear, definite statements of the way it's going to be or should be. That's what I'm always looking for. I've been looking for answers forever. In school I sought the right answer to make the perfect grade, to please my teachers. In college I searched for the right answer for a major and after graduating scrambled to find the answer to what to do next. I become panicked when I don't feel like I have a clear answer, when I don't know exactly which way to walk, when I can't be certain that I'm doing "it" right.

And, now, as Brad wrote, no one will give us a definite answer. No one will tell me exactly how long this will all last, because no one on earth knows. There is no answer and I'm forced to live in this moment, in each moment with out the certainty of the details I crave or the validation of what I believe will be.

But it's not just the end I want to be able to know clearly, perhaps to see it so I don't fear it, but I compare my heart and thoughts and processes to others in similar situations. There it is. Something I can see in all of my life; I want to "act" right, too. But what is right when you are losing a baby? I read other mother's stories and fret over my heart feeling different from theirs. I read of them longing for live births and for as many days with their baby as possible. I question my love for Sully. I question my "rightness" as a mother. Because I don't long for that.

I kept trying to get our genetic counselor to tell us exactly what the things we saw on our ultrasound meant for Sully. What does it mean for him that the back of his brain isn't right? What does it mean that his heart has a clear hole in the pumping chambers? She gingerly described what happens when a baby is born without a properly functioning heart. It was a description of a baby who's heart must struggle, and the question of his length of life depended on how long that imperfect little heart could struggle before it let go. I don't want his heart to struggle or be so strained. It sounded painful. I wonder if he is born alive if he'll be in pain. I don't want him to be in pain or to hurt. As long as he is inside of me, my heart works for him. He doesn't have to oxygenate his own blood yet and send it out to his body so the hole doesn't really bother him right now. He doesn't struggle right now. In fact, I think he's quite cozy and happy.

I want for Sully to go from here, from the safety and comfort of my belly, to the safety and comfort of God's own arms. I want it to be quiet, hushed, not filled with the rushing to and fro of medical aid. I want it to be gentle for him, and as gentle for me as it can be.

And yes, for me, is it wrong to long for things for myself? In my head, the good and right mother sacrifices everything for her child. But I have found myself hoping that I wouldn't have to endure the full 40 weeks of pregnancy if it is truly to end the way it is predicted. I had hoped that the ultrasound would show us that an early release was coming. Instead we were told to expect to go full term, and it overwhelmed me. Is that selfish? Is that wrong? Shouldn't I want every day possible with Sully? I'm creating what the "right" way to be is in my head based on some journal entries of other women, on what I think others expect of me.

How long will I compare my heart, myself, to others? To hold myself up to some answer that doesn't really exist. My midwife reminded me yesterday that I can't do this wrong. Right and wrong - why am I such a slave to it? When will I learn to honor the integrity and validity of my own experience?

We Had an Angel Instead

Sully is a wild man - at least according to the technician who was trying to capture him for our 30 week ultrasound today. We watched him flip, spin, wiggle and cover his face as she tried to get all his measurements in a playful almost Seaworld like performance. How can someone so alive be so close to death?

We both know that the amnio was precise in its trisomy 18 diagnosis, but there was a small part of both of us that hoped against all that when we went in today, they would look at Sully and realize they were wrong and he was really going to be alright. Sadly, with all his boisterous movement we still had to look at all the little signs of his condition, but it wasn't until they got to his little heart that just isn't quite positioned right and has definite defects between some of the chambers that I was reduced to tears again. Something about the heart, not the muscle itself, but the symbol it is of so much in our culture just made me weep for him and all the earthly love he will never know.

Both Heidi and I had hoped for some kind of indication of a timeline for Sully when we went in today, but as with so many aspects of this there were no clear answers. We also had to begin thinking about a lot of decisions for him that have until now seemed very far away. All in all it was much harder than expected for both of us. We talked with our genetic counselor about how to share Sully with Ella and Zane once he comes, and she recommended a book to us called, "We were having a baby, but we had an angel instead" - I think that one is going to be good for us...

My Ella

Ella's teacher, a long time friend of mine, came out to the car before Ella got in. Uh-oh. That is usually the sign of trouble, and I typically do jump to the conclusion that she must have done something wrong. But, that wasn't the case. Her teacher just wanted to let me know that Ella had been talking more and more about Sully which she was glad about. This day, in particular, Ella had been very emotional and cried about not being able to have him be around for very long. I thanked her for letting me know and began to tear up myself.

A big question of ours has been how to talk with our children about their brother. We have so many unknowns ourselves that we aren't able to offer them many certainties. Ella pointed out to me the other day that my belly was "so big". The bigger I get the more Ella has talked about the baby and wanted to feel him move. She even puts her ear up to him to try and hear his heart beat. When I ask her what she would like to eat she then asks me what I think Sully would like to eat. These are such sweet moments but also heart breaking. She continues to ask when Valentine's Day will come and our baby. I try to explain to her that the doctors have told us all is not well with Sully and that he may come to us before Valentine's Day and that he probably won't be able to stay with us for very long. We talk about loving him now and knowing that he will be perfect and healthy and happy in heaven with Jesus. She listens. At night, she prays, "God bless baby Sully".

Later in the same day that her teacher spoke with me, Ella tells me herself about being sad at school about Sully. I hug her and tell it's OK to be sad. She proceeds to hopefully tell me about her little friend at school, that the doctors told her mommy that she wasn't well in her tummy but that she was really OK. I wish I could have listened in on that 4 year old conversation. I smile and tell her that I hope and pray that God will make everything right with Sully, too. And this is what I wonder: I want a miracle but why do I feel like I don't have to have a miracle? There is a place in me that is at peace accepting that Sully is who he was meant to be, that he isn't an accident or a mistake or wrong, but that even in his brokenness he is right. These are strange thoughts to me and so I don't share those yet with Ella. I just hug her again, and she goes back to mothering her baby dolls.

All I want for Christmas

The past few weeks I have been asked to make my "Christmas list", a task I normally relish but that seems, I don't know, just kind of silly this year. I'm happy to relay the lists of my family, and to get ideas from other people's lists, but my own list - well - can't you all guess what's at the top of my list? That's not fair, I know, and so I try to think of a few things to write down so I can stop being asked.

Only God can give me what I want most this Christmas. It was my 30th birthday wish,too, as I blew out my candles. We go for an ultrasound next week, 30 weeks, and I pray that somehow there will be a miracle. I want Sully to be made completely whole. I know it's outrageous to ask for - that's why it's a miracle right - because no one else can do it but God. But I find myself asking him to fix every single cell in Sully's body. Don't worry, I know that if that isn't what God chooses to do that there is already a miracle to Sully and what, according to what modern medicine tells us so far, will be his short, yet still purposeful life.

And so, I have a second thing on my Christmas list. I want a "miracle" playground. Yes, a playground. I want Sully to be remembered in a place full of joy and laughter and childish fun. I want to take my children there and see my friend's children climbing all over a beautiful playground and think of Sully that way instead of at a cemetery. There is a perfect spot at our church on Colonial Avenue for it(and with the teaming amounts of children that are part of our church it will be a very welcome gift). It is an enormous task to raise support for a public playground like this. But, I know it must be a divinely inspired idea, because the effort and large price tags don't daunt me at all (and normally they would). Instead, I have loved leafing through playground catalogues and trying to decide, with Sully, what we "want". It is a comfort to me to be able to do this now, to dream of this now, to raise support for this now, to plan for this now while Sully is with us. It makes him a part of it now and so, when "then" comes, this time, too, will be part of my few but sweet memories with him.

So, with the help of some friends and our church, a fund has been set up for my sweet little Sully to help us build this dream. Many people have asked what they can do for us. I think this is what I'd like to ask you to do for me, for us, for Sully if I can be so bold. Help us build this playground. Anything you would like to contribute may be sent to Trinity Presbyterian Church (1600 Colonial Avenue, Norfolk, VA 23517)and marked for the Sully fund or Sully's playground. To build this for him and for all the children of our community, will be nothing short of a miracle.

That's all I'm asking for this Christmas - just miracles...

Sully's stocking

We've been pulling Christmas decorations out of the attic and slowly putting them in place both in and outside the house. It's nice to go ahead and get them up and then our finishing touch will be next weekend, the first weekend of December as it seems to be our tradition now, we'll go pick out our tree. As I went through decorations and lights, I came upon our stockings. I found them back when we just had Ella and not knowing if we'd have two or three children I went ahead and bought five so in case we ever did have a third we'd have all the same "genre" of stocking. And so I look at this last stocking I have and wonder to whom it belongs. It' bright red with crisp knitted snowflakes and three cheery snowmen - the distinct quantity of three always being what made it the third child's stocking. I just hold it in my hands for a moment, so soft, so colorful, and a world of possibilities race through my head. What if we do decide to have another child after Sully? Should this last stocking be reserved for him or her? I try and picture another little person or even being pregnant again - images flicker and fly away - nothing I can hold onto with any certainty. But even if that does happen, that child would not be our third but rather the fourth - no matching stocking then. Sully is our third child. That is his place. And so I picture putting it up for Sully this year and every year after this in memory of him and that makes the tears come. It almost seems too much and I tell God that. To miss him for the rest of my life, to cry when I hang stockings every year from here on out, to see his little shadow, as Brad says, always chasing behind Ella and Zane. I put the stocking down and walk away. I decide to wait until next weekend and the tree to put up stockings. But, I do believe that bright red stocking is Sully's and will always be...

Thanksgiving

Today, a day to purposely remember all that we are thankful for: I am thankful today for 7 months with Sully. I am, strange to say this, even thankful for the tears and the way suffering is carving deep into my soul making me a vessel able to hold true joy.

I remember finding out we were pregnant again. It was such a perfect day, a happy day. We all dressed in our rain gear and played in the warm summer rain. I remember us taking this picture and thinking how there seemed to be the perfect space beside Ella and in front of Brad for our third little one. I am thankful today for all the joy and happiness that surrounded Sully before we ever knew of Trisomy 18. I am thankful today that by some incredible grace, we are embracing joy in the days that we still have left with him.

Our first parade

This has been a weekend of celebration. On Friday night the whole gang (kids and cousins, aunts and uncles) squeezed into our car for a tour through the first night of the Holiday lights at the botanical gardens. The kids were enthralled as was I. I've always loved Christmas lights. Then, last night, Sully and I participated in Norfolk's Grand Illumination parade, my first time in a parade and obviously Sully's first time, too. (Thanks, Karin, for pushing me along in this - we definitely made some memories.)


I know it seems a bit early to be "getting into the Christmas Spirit" but I feel myself wanting to jump into it full force. I love the joy and celebration, the brightness and happiness of it all. I know some people would rather not see all the Christmas merchandise go up in stores right after Halloween but I've never minded that. And I love it when Christmas carols begin playing on the radio - yes - nonstop.

When we first had our news of Sully's condition, I never could have imagined myself eagerly anticipating the holidays. But here I am, wanting to share it all with him, telling him everything I love most. All through the parade I was talking to him in my head: "This is a parade, Sully. And this is Norfolk, the city where we live. And that is a marching band you can feel vibrating through you."

I hear myself talking to him more and more as the days go on. I've decided to sing in our Christmas choir because I want him to hear beautiful music of the birth of Christ, not just hear it but feel me sing it. It is as a friend wrote me, I am recognizing his humanity, and I'm eager now for others to do the same with me.

A friend who has walked through her own suffering came to visit me last week. In the middle of our conversation she asked to feel my belly. I just cried. It's something so normal, a routine part of being pregnant with a "healthy" baby, so much so that pregnant women complain of it. It's something I've done very little myself with this pregnancy. But to feel around for this little guy, to let someone else touch him and me, to try and feel him move, it was a moment of really embracing his humanity. All of it,all of this, all of these days are so painful but somehow so beautiful.

Expectations

I have two dear friends from my past driving up tonight for a visit. I am excited to see them but as I await this visit and their arrival I find myself wondering how they will expect me to be. I wonder in what emotional state they expect to find me. They are coming because of all that has happened. If Sully were not the baby he is this trip would not be planned. Should my friends walk in my door to find me in tears? If they find me well and smiling will they feel their trip is a waste? I'm still functioning so normally. Should I be? I see my line of questioning taking me beyond just these next few days and to into the opinions of all the people around me. It is a strange thing to not know how to "be" in grief. How revealing of my heart that even in the hardest days of my life I am concerned with others opinions of me and questioning if I am fulfilling their expectations of me - or rather - what I perceive their expectations of me are. I had planned on being apart of the holiday parade this year with some friends but assumed I shouldn't do that after our news of Sully. But, what if I do want to still be in the parade with Sully? I wonder if that is inappropriate or rather will "appear" inappropriate.

I think when we first found out our "news", life really did seem to stop. I couldn't imagine facing anyone or doing anything. But, now, I slowly feel myself embracing this baby for who he is and I do feel that life force calling me back, as you, Seastar, keep reminding me. At first, I just wanted everything to be over. It has only been in this past week that I've had glimpses of the desire to not hide my pregnancy but to embrace it and let my little Sully be who God intends him to be. My little niece came up and kissed my belly today and asked if my baby were a boy or girl. I told her my baby was a little boy named Sully and she just smiled and patted my belly which led my daughter to do the same thing. It was such a sweet and beautiful moment of recognition. I loved it. I loved that she didn't look to me to see how I would react - she could have cared less. She was so pure and innocent and uninhibited. She then went on to tell my son, Zane, that he now was going to have a sister and a brother, so matter of fact, so free of all the sadness in my own heart. That was the best moment of my day.

I want my heart to open more to this child and to the days we have with him. I want to let go of my concern with perceived expectations and also the expectations I put on myself. I watched a beautiful video sent to me today (thank you Nicole) that left me in tears but also hopeful as I watched another couples tribute to their own son's life. Of course you can feel the sadness but more than that you feel a resounding sense of celebration of this little boy's life. When this is all over I pray that I will have loved Sully more fully than I ever could have dreamed possible, that I will know the redemption in this brokenness, and that I, too, will have celebrated well.

Here is the site of the video if you'd like to watch it too: http://www.youtube.com/watch?v=th6Njr-qkq0

The Gray Area

Last weekend we traveled to upstate NY for my cousin's wedding. We planned to take the ferry from Delaware to NJ and drive up the Jersey shore into NYC to visit some of our old haunts before going on to the wedding. When we originally found out about Sully, I wanted to cancel this trip along with the rest of life, but slowly the fun of planning a trip and thinking about something else became appealing. My mind was mostly on the trip though and not the wedding.

I realized a few days before leaving that even though we had processed so much regarding Sully, I didn't know where to start with the people we would see at the wedding. They would be in the 'gray area' that we hadn't really dealt with much. We know now how to talk with our community about this who is walking the road with us, and we know how to answer strangers that we will never see again, but what about more distant family that we will continue to see, but only once or twice a year? Did they know or not and what would they say as several of them were pregnant also.

The answer is that almost no one mentioned it - either asking in ignorance or in knowledge - which was really our hope in our hearts... we thought. In a very suprising way, it was somehow almost sadder to not talk about him. This has left me very confused about how I want to deal with this phase of life, but certain that Sully is such a big part of me that I do not want this to 'just all pass' and be back to normal. Somwhere there is a craving to talk about and share this huge and intense part of my life, but I still don't know how to do it.

Oddly, at the wedding, it was not the other cousins and guests who were pregnant that made me the saddest, but the relationship of my cousin who got married and her siblings. You see, there are four of them (2 boys and 2 girls) spread out from 26 to 36 that have been extremely close all their lives, they come together for holidays all over the country, they share inside jokes, they can laugh at the flaws of their parents, and they love each others kids like only aunts and uncles can do. This was the kind of family dream that lead us to the decision to have a third. The image of our kids in college and career years coming home to a house where love and encouragement had sent them into life prepared and with countless threads woven between them that would always draw them back together throughout life, even after Heidi and I were gone. But Sully will never know that though his shadow will always be following behind Ella and Zane in every day on the playground and in the uneaten portions of every holiday dinner.

Heart shaped medallion

Last night, at a small dinner with close friends, I was given a beautiful gift for my 30th birthday. All day today I keep thinking of a song by Dave Wilcox that describes this gift perfectly.

"If I had a spell of magic
I would make this enchantment for you
A burgundy heart shaped medallion
with a window that you could look through
So that when all the mirrors are angry
at your faults and all you must do
You could peek through that heart shaped medallion
and see you from my point of view."

It wasn't a literal heart shaped medallion I was given but a collection of letters from dear friends and family members telling me of their love for me. I was so overwhelmed by the time and energy it took to create such a gift, by all of the letters and photos, by all of the love sent my way for this milestone birthday.

Last night, as I read through many of the pages, it almost felt like an out of body experience to see me from your eyes. How can you all sum me up so well when I always feel so confused about who I am? Perhaps it was my first glimpse of who God is making me, of this next decade and a coming of age as I walk through both joys and sorrows. I keep looking through it today in awe that that many of you like me - seriously - I can be so difficult. I so treasure each letter and in each one see how very good God has been, and continues to be to me. Thank you for such an amazing gift. Thank you for loving me so well and for being such beautiful friends.

Thirty

Today is Halloween and also my birthday. It's funny how much expectation I can put onto birthdays and holidays - expectation that is often disappointed. So, of course, 30, pre-Sully, was filled with an incredible amount of building expectation. But, post-Sully, most of the celebratory hopes have been dropped. But, still I find myself with hopes and expectations.

Brad, who knows me so well, gave me a birthday "schedule" yesterday. It isn't full of big party plans and such but it is really perfect for me. He has scheduled me a morning walk and time to be in the house alone for reading and reflection. I must be old since that seems like such an incredible gift to me! He's even blocked off time for me to run around and do random errands - something I seem to enjoy that he doesn't really understand (which has led to several frustrated Saturdays together).

Already our "schedule" is off. I've opted for cinnamon rolls at home under the birthday balloons and streamers and sign Brad stayed up late installing instead of the breakfast at IHOP (which I also love but Brad can't stomach). I think, with Sully, and this day, I see that plans are nice but that life usually happens instead of our plans. Even on my chilly walk this morning I realized how much comfort a plan gave to me but that if I held it too tightly I would ruin it all with my demands and expectations. So, we'll hit some of our points today and not others and after 30 years and now Sully, I'm somehow ok with that.

Sully himself isn't part of my plan. My plan was for a third "perfect" child. But I'm thankful for Sully today, especially today, as he helps me to grow up. I'm glad he is with me as I have quiet moments "alone" but not alone. He makes me long for a time when I will know him and he will truly be made "perfect" in the most perfect sense of the word.

"Behold, I will create new heavens and a new earth. The former things will not be remembered, nor will they come to mind...Never again will there be in it an infant who lives but a few days." Isaiah 65:17 & 20

"Your goodness and unfailing kindness shall be with me all my life." Psalm 23:6

My song today

O love that will not let me go
I rest my weary soul in thee
I give thee back the life I owe
That in thine oceans depths its flow
May richer, fuller be

O light that foll'west all my way
I yield my flickering torch to thee
My heart restores its borrowed ray
That in thy sunshine's blaze its day
May brighter, fairer be

O joy that seekest me through pain
I cannot close my heart to thee
I trace the rainbow through the rain
And feel the promise is not vain
That morn shall tearless be

O Cross that liftest up my head
I dare not ask to fly from thee
I lay in dust life's glories dead
And from the ground there blossoms red
Life that shall endless be

The last legal day

Today, October 24th, is the last "legal" day I could have terminated my pregnancy. I knew I wouldn't do that when the option was presented to me four and half weeks ago but I have contemplated it more than I ever thought I would. I have to remind myself, particularly today, that as there is no turning back now from this road, that God is indeed good and is faithful to his promises to me. I must believe not only that He is what He is but that He is actively seeking me and pursuing me with His truth and with His goodness. I believe He is jealous for my confidence in Him and now that I have let go of the confidence I could have placed in making my own "choice", He has to be faithful. I will not make it if He is not faithful.

I struggle the most with fear of the unknown. I tell myself that while losing a child in the womb is terrible, that having him be born and live for a time and then losing him would be even worse. I think this mainly because, selfishly, I can't even imagine how I would care for such a sick child, such a deformed child. I fear that I would not feel love for him and see in my heart that what I love most is beauty and (seeming)perfection. And now, here is a child that most certainly would not be physically beautiful or anywhere close to perfect. Also, I fear the tremendous strain it would be on me to care for such a needy child if he did live. So, not only is God laying bare my idol of superficial beauty but also the idol I have made of comfort and ease of life. I'm embarrassed to even confess these things but such is the truth of the ugliness of my heart. But the other side hurts too. The longer Sully is with me the more I do somehow love him. So, there is the fear of truly loving him and still losing him. So, I must let go of yet even more of myself, my love of control, my love of calculating what will happen. I, somehow, will not "win" in any of this. But I know I will be changed.

Places from the Past

I spend a lot of time wondering how I should be acting these days. Should I be tearful and full of sighs every minute of the day? How could I not be, my son is dying? Yet, I feel myself slipping into my 'normal' personality more and more these days. At first, it was a relief to be able to smile again, but now I begin to wonder - do I smile too much? Have I forgotten already? am I just living in denial?

This past weekend, I went back to where I grew up. Driving to Savannah with my uncle, cousins and brother I was at first quiet, but by entering into a trivia game my old personality traits - sarcasm and an onslaught of random comments - quickly bubbled to the surface and stayed. Was it defensive, denial, or just the ingrained patterns of my personality? I don't know - and I don't know if I should fight it or give in.

It wasn't until I broke away by myself and went to an old high school haunt that I was able to cry for Sully again. It is an old chapel in Savannah that once, long ago must have been the main church itself, but multiple new buildings have left it quiet and forgotten on the back of the property with doors that are never locked. A friend found it in high school, and a group of us had a few pretty powerful prayer times there. I have always viewed it as one of the places I have felt closest to God in my life. I knew when I went to Savannah that I had to get back there - I found it the same as I left it ten years ago.

Speaking into the dark - I prayed that Sully would make me become a 'real' person. I have lived an easy life - pretty much free of any taste of suffering. With the news of Sully's condition I have already begun to enter into life in a different way. I used to run from uncomfortable situations - if people had any kind of struggles in their life - but somehow now it doesn't seem to really matter. Always I have been scared of saying the 'wrong' thing, but being here now, I see how much I really don't care when people say the wrong thing. The situations are so much bigger than any words - right or wrong - that I find I have far more grace for people in my current state than I have ever had in the past.

I suppose I will continue to be my 'old' self in large groups - work, church, groups of friends, and the brokeness of the chapel will be reserved for groups of one or none. I think that like Heidi said, Sully has already, without a single diaper or cry, changed our lives more than any of our children - I just wish it didn't hurt so much.

Loving Sully

"Keeping your heart oriented towards Sully is like walking back into the surf and letting the waves grind you into the sand again. It was all I could do to keep returning to the water to be hit again with everything he was and wasn't. I never could look up at those moments. I think if I had, I would have seen the air full of droplets sparkling like diamonds."

I think about these words constantly. I hang on to them because they perfectly picture my heart and my struggle. I need validation in that struggle. I have punished myself for struggling because what "good mother" would ever struggle to love a child. But, the more I think about it, the more I know without a doubt that love, true and deep, is always a struggle.

I have been fortunate in my marriage. It did start with all the butterflies we hope for in our American ideal of romantic love but also has grown to a deeper level - what really is more like love than those beginning butterflies. Motherhood has been a bit different. I guess that first pregnancy has something similar to those butterflies - everything is new and exciting. You want a baby but really have no idea what you've gotten yourself into. I think many of us picture it being easy to love our children (before they get here). But then the sleepless nights come and tantrums and the nightmare of potty training and so on. I certainly have not always felt warm fuzzy loving thoughts in the middle of the mundane of life. But no matter what, Brad is my husband, and Ella and Zane are my children and I choose to turn back to them and to care for them and to lay my life down for them.

And now, Sully is my child, too. And it does feel like turning my face into driving rain when all I want to do is run for shelter. Loving him is to let the waves grind me into the sand. It does take everything in me to "keep returning to the water to be hit again with everything" he is and he isn't. For now, I have to let go of the pressure I put on myself to be a certain way. I have to embrace the small ways I love him and ways I am "keeping my heart oriented towards" him. I have named him. Is that not love? I am carrying him. That has to be love. I still smile when I feel him move - something I find almost miraculous for myself to do but it must mean I love him. This, without a doubt, is the hardest thing I have ever done.

an email, a name, and a verse

"Sully, I'm calling him Sully. It doesn't mean anything super spiritual - keen eyes - after I had called him that a couple of days a friend of mine wrote when she saw his picture that he had a beautiful face and eyes that looked like they were listening. And then it just seemed right - like his name. Sullivan Gage Anderson. Gage means to measure and he does feel like he is measuring everything we are or thought we were. I feel like I am being weighed and measured and examined - not just me but everything in my life - every thought and action - every reason for why I do the things I do and have done. But Sully is softer, more tender. Oh I am struggling so much. It helps me to call him by name, to let him be a real baby. My heart is trying to move on and distance myself. I feel myself pulling away from him, not wanting to love him. But I want to love him - I really do want to love him. Why am I struggling so much? This is so hard..."

Remember my affliction and my wanderings, the wormwood and the gall.
My soul continually remembers it and is bowed down within me.
But this I call to mind, and therefore I have hope:
The steadfast love of the Lord never ceases; his mercies never come to an end,
they are new every morning, great is your faithfulness.
"The Lord is my portion," says my soul, "therefore I will hope in him."
Lamentations 3:19-24

Waiting

I never know when they'll come, the tears. A friend bought me sushi for lunch today and I cried. When twinkle, twinkle little star played while Ella tried to hold her practice violin, I cried. I sat on the edge of my bed last night and put lotion on my feet and cried. I am being so functional, so matter of fact about life, but then the tears break through. And I am scared all over again and don't feel brave or strong or courageous at all. Every time I catch a reflection of my growing belly the first thought in my head is that my baby will die. I can't stand seeing myself. I try to think other things, I try to tell myself to be grateful for the time I have with him but I'm struggling to find a balance. Emotionally I see myself trying to move on but nothing has ended yet. I have to go to normal appointments, 24 weeks, 28, 32 and so on until - until when? I feel like I am just waiting for this to be over.

Close to the brokenhearted

I went to church on Sunday. I wanted to go but couldn't believe the guts it took for me to actually walk through the door. I don't know why. I love our church. Perhaps it is because it is such a normal part of our lives and everything normal does seem so unusual right now. I sat outside in my car and watched people walk in for probably 15 minutes. Finally, I walked in on the last song. As soon as I walked in I burst into tears. I couldn't sing, just cry. I'd like to say I paid very close attention to the sermon and left with some deep truth that will carry me through these days. But all I can say is that I was there and that it was good for me to sit in the back and cry.

I think about all the things I guilt myself into doing. About all my thoughts of what will bring me closer to God. I should pray more, read my bible more, be more this or that. These days are so different. I can't corral myself into any of that by the pressure to perform I normally use to function. I hear, "The Lord is close to the brokenhearted" and I know it to be true. I have done nothing and still he is near me. How little I have to do with his love. I am broken and cry every day, I get angry, I am distant and cold but I know with a certainty that must be a gift (because I keep questioning why in the world I would keep feeling it) that God is close to my broken heart.

There is a sacredness in tears. They are not the mark of weakness, but of power. They speak more eloquently than ten thousand tongues. They are messengers of overwhelming grief - and unspeakable love.
Washington Irving

bird song

Yesterday was a nice day. Slow, the phone did not ring constantly only for me to feel guilty and then tell myself to not feel guilty for not answering it. I went to take pictures of a family I've photographed for a couple of years now. We don't know each other well. I only see them around their "picture" time so we don't know anything personal about each others lives. She asked about my pregnancy, when I was due and what I was having. I was surprised at how calm I was. How I answered the question with the simplest answer; "We are having a little boy and he is due in February." We exchanged commentaries on the third which she also now has and I was amazed that I could do it. That I could pretend that everything was just fine. That nothing at all was wrong. That we were just having a little boy in February. It was actually really nice.

I've found a time to walk. When I wake up before the world, before daylight is totally here, when the morning birds have just begun to sing, I put on my shoes and meander through my still sleeping neighborhood. I like the feeling of privacy, that neighbors don't see me as I walk past and that I don't have to politely smile and say hello to anyone. I like the sound of the birds. I like talking to God and to myself and to my little boy. I have a name I'm calling him and I like his name. I like saying it, calling him by name. I've never called my babies by name until after they were born - it seems so different to me but so necessary this time. I couldn't believe I said it or even authentically felt it this morning, but, I thanked God for this little boy. I know he is leaving a permanent impression on me that I'm persuaded to believe will change me for the better.

Breathing Space

A friend asked yesterday how many weeks I was now and I couldn't tell her. I really didn't know. Time stopped at 20 weeks with our ultrasound. Have I actually progressed further in being pregnant? I look to a calender: one week and five days since that ultrasound and the changing of our lives.

The surprise of not wanting to be alone was met by dear people who have just been here for me, been here to do the dishes with me, or sort through Ella's old clothes, paint a room with me for distraction, or provide us food for our bodies. But I sense a change and a need for some time and space without distraction. The thought of being alone doesn't terrify me as it did that first day after our discovery. And so, it is time for me to just breathe, to walk slowly, to live each day with my son intentionally. For today, I do not want distractions, just space...

My choice

I never thought I would be in a place to make a choice like this because I never, even in my worst nightmares, could have created this scenario in my head. Dealing with something like this was so far off my radar screen – no where even close to life possibilities in my head. I ask some women what they would do. Most say they don’t know because who does really know? I want someone to make the choice for me. But ultimately, I can ask trusted women, talk with Brad, be advised by counselors, but in the end, I am the one who must make this choice. I have to walk down this unfathomable road. People say I am not alone but in the end am I not alone? None of you can do this for me – none of you will make this choice for me.

To choose to say goodbye now would not end it all, there will be grief and tears and processing no matter when it happens. In the end, I know I must say goodbye. To let this little life play out is to ask a tremendous amount of trust from me and to let go of any control. To look down this road is terrifying. I let myself believe I’m debating this in my head but already I know we will walk this road. And it makes me ache. As much as I wish I could let go of this right now, I know I am not ready to let go of him yet. In a very strange way, he is a protector to me. I glimpse hardship and grief, but also, time for stillness, a reprieve from the world while he is with me. If I let him go, I will expect myself to get “back to normal”. But, really, will I ever be able to do that again? We had planned this to be our last child so why not let him be? What do I really have to rush back into? What is so important? All the things I have filled my life with, have any of them ever mattered? Perhaps this choice will be the truest choice I have ever made…

final results

Friday was our day for the official diagnostic word on our son. It came later last night. The quick results didn't reveal a third allele on the 18th chromosome. We didn't really know what to do with that information this past Friday. Did it mean there was hope? Could our son just have a few problems but hopefully correctable problems? Was it something else, something genetically between the two of us? I grew angry and then hopeful. Brad was still sad but yesterday came back up to some level of normalcy. And then the phone call...

The final results reveal without a doubt that it is trisomy 18. Apparently that chromosome can be tricky and not cooperate with the quicker test but on every cultured cell a third allele lit up - every single cell. It's in his entire body - every single last cell is fatally flawed. There is no point to meeting with cardiologists and surgeons because they can't fix every single cell.

We cried all over again and then held hands as we walked through the field next door. A light rain fell on us - how incredibly appropriate - seriously - are we on a movie set? But as I think about that now, it wasn't the pouring rain and devastation of last Tuesday. Devastating again, yes, but a misting rain that we were walking through. Even in it there was that little seed of hope but not that our little boy would be perfectly normal but that we would survive this. That maybe, we would find a name for him, and instead of looking at his life as a waste we would say that this is what his life cycle was always intended to be, that we could accept that and maybe, just maybe, actually enjoy the days we have with him(?). I thought, he's been here for his brother, Zane's, birthday and in just a week he'll be around for his sister's. And, then, I want him here for my 30th and Halloween - I should be sure to feed him lots of candy. Can he taste that or at least get really wound up inside me from it? And what about a Thanksgiving turkey - I can tell him how I've really liked ham better and give him both. Oh, and Christmas, will you be able to hear the carols of Christmas little boy? I want you to hear my favorite ones and hear your brother and sister's delight on that beautiful morning. And then I know you'll go. And somehow I can rest in that.

Cake in the afternoon

Monday, October first. What do I do with this day? Do I go back to my normal life, normal activity? I want to and then picture it in my head and decide I'm not ready. The quick results for my amnio left us with more questions so now we are waiting until Friday for "answers". It's strange how I'm not all that anxious for Friday to come. I had more anxiety about that first appointment, that first ultrasound. I hear myself saying, just expect the worst. You know what's coming so why even wait for it? But then there will be a glimmer of hope. Yesterday, after talking to a friend, I had it for the first time all week. Hope has never been that tangible to me before. Perhaps the absence of it made me recognize it when I felt it again. And, even while feeling it, holding it lightly, I knew it wasn't a guarantee that everything would be OK, but I was peaceful and calm for just a few hours before I started rationalizing myself out of it.

So, here I am - made it to the afternoon. I'm printing a syllabus for a course I had registered to take. I've decided to still take it but have let go of making myself answer if I will be able to complete it or not. I even ate a piece of leftover birthday cake as I sat down to print. I know that sounds strange but food has been less of a comfort than I would have expected it to be. I see why people bring food - when your heart is breaking that last thing you care about is eating - so it's put in front of you and you put some in your mouth and physically you are nourished despite the pain. So, to eat a piece of cake at 4 in the afternoon seemed like a part of Heidi before all of this. Or maybe it's just that tangible hope again...

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…

Welcome to our BLOG!

I was so excited to set this blog up last night, and then I realized that I have absolutely nothing to say - or rather nothing I thought of to say, seemed cool enough to actually put up where people might read it. Then I remembered that this is just one of millions of blogs. It isn't going to be every one's opening email on Monday. In fact, it will probably never be seen by anyone except my friends and family who already know how incredibly uncool I really am, and at that moment I felt much more freedom to put up whatever I want. So, just what is our fascination with this blogging thing anyway? We are all obviously way more into our own lives and think they are much more important than they really are, but somehow publishing ourselves on the web seems to bring some kind of validation to it all. I already feel like I am famous and all I've done is change the font on our title and posted a picture. I suppose it is a way to allow people to catch up with us only if they really want to. If I was to send you an email or a letter then you would probably feel obligated to respond even if you really didn't want to. This way you can look, comment to someone else in the room about what self-absorbed never-stay-in-touch people we are, and click the window closed with a vengeance. Now, you feel better, we don't know, and no one has to pretend anything.

Brad or Heidi - you decide?