Saturday, December 29, 2007

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.

Saturday, December 22, 2007

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?

Monday, December 17, 2007

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...

Thursday, December 13, 2007

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.

Wednesday, December 12, 2007


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?

Thursday, December 6, 2007

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...

Wednesday, December 5, 2007

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.