Posts from September 2009.

The Luxury of an Uncertain Faith

_daddy handFaith is a luxury before you lose a child. Worship … belief … salvation … they are just words – nice words – until you need specificity. I am sure of my savior. I am sure of my salvation. I am sure the Bible contains the word of God. But the exact details? What is heaven precisely? How much of the Bible is literally true? I have no idea.

Or, at least, I had no idea.

Now that a precious part of me has joined our savior, I have to be positive that heaven exists as a physical place that I can get to. That it is perfect and beautiful. That she is safe and loved. That we will be reunited. That I will see her again. I have this reoccurring vision of sitting down with Anna as a young woman. She has long ashy blonde hair and is perfectly at ease. She has natural beauty. She is telling me all about herself. And she is happy. I can see this so clearly. I have to believe it’s how our heavenly reunion will be.

Right after we lost her, I had a strong sense of Anna being held by her great grandma and namesake, Maxine Podoll. I saw her in Grandma Maxine’s arms, and my grandma, Adele, looking at Anna right over Maxine’s shoulder. They are smiling. Anna is smiling.

Was it what my brain needed to believe? Was it a projection of what I expect heaven to be? I do not know. What I do know, however, is that this vision was very clear, as are others. I see my friend Angela’s kitty with Anna. My sister-in-law’s friend Shiloh lost her brother, her sister, and her father. I can see her brother and sister there with Anna. My grandfathers are nearby, and there are other men – who I think are Steve’s grandfathers – there too. Although I haven’t seen it, I hope one day Anna finds baby Emma.

When I was a kid, my brothers and I went to the Episcopal church with my dad when we were at his house every other weekend. I remember Sunday school and being an acolyte. On the Sundays I was with my mom, I would find friends to go to church with. I mostly worshipped with the Methodists (with my neighbors) and the Presbyterians (with my friends Kendra and Kerry), sometimes the Catholics (with Jen). I don’t know why I felt so drawn to the church. My dad stopped going regularly when I was around ten years old but my faith, though immature, was already steadfast.

Throughout my childhood, I felt a powerful, loving and present God active in my life. I did not pray often but I clearly remember feeling from an early age that God answered my every prayer. Once, I think I was 15 years old, I was riding my ten-speed home from town. I was tired and still about a mile from home. I looked down the road ahead of me and thought that I would see if I was right, if God did answer my every prayer. So I prayed simply that the end of the hilly road I was on would come sooner. Then I crested the hill and felt the full force of God’s active presence in my life when I realized that I was not as far back as I had thought, and the end of the road was right there in front of me. I turned left, and coasted the downhill the rest of the way home.

I always had a sense that God was looking out for me, drawing me into his presence. (This is not to say I had a blessed life. I didn’t. It was some good, some bad, pretty much like everyone else.) I thought God probably had to work harder to reach me, because I was not raised with an active faith at home. I started going to the Lutheran church in high school and decided I wanted to be confirmed, so I signed up for adult education classes (most kids take confirmation classes when they’re in seventh and eighth grades). I was confirmed in the Lutheran church when I was 18.

Then I went to a Lutheran college. I married a pastor’s son. Looking back at my life now, I can see a bright line of faith back as far as I can remember. There is no earthly reason that I went to church with my friends when I was as young as six or seven. Why did I decide to get confirmed? Why did I keep going to church every Sunday, even after my friend went away to college?

There were many times I would go into church – both when I was in high school and as an adult (Steve sings at a different church on Sunday mornings) – and sit by myself. Worship would begin and then I would feel a sweep of air as a friend coming late sat down next to me, the coolness of the outdoors still clinging to their coat. And a part of me that I didn’t know was tense, would relax. That is how I began to surround myself with a community of faith. Because that sweep of air didn’t just happen at church. That part of me would relax whenever I came across the right person. Salty people, as one friend says.

This feeling of God always answering my prayers has never left me. Had never left me. Even as Anna was dying in front of my eyes, I thought, God always answers my prayers. And I prayed. Intensely. “Please save her. I need her. Please heal her. Please help her. Please … please.” And God did answer my prayers.

But the answer … was … no.

And in the days that followed, I was completely devoid of prayer. I was empty. I never knew what “emptiness” was until then. There was nothing inside of me worth sharing. Anna had left a gaping, endless hole. And I could not pray. What was there to pray for when I had lost my beautiful Anna? I texted my pastor: “I haven’t prayed since we lost her. I don’t know what to pray for. She is gone. Feels selfish to pray for myself.” And he sent me the most gentle reply, the exact words I will get wrong, but it was something like: “It’s ok. Your heart can pray without your head. God knows what you need. It is also ok to pray for Anna. Let others do the praying for you.”

And so I prayed for Anna. I prayed she was safe. I prayed heaven was real. I prayed we would be reunited.

Now I see that God was taking extra special care of me throughout my life. My whole life, God knew Anna was coming. God knew it would be short. God knew I needed to be prepared. So God built my faith upon a rock. And God surrounded me with a family of faith. And when the foundation of my very being was shaken to the core, I was not alone. And I am not alone now.

We will commemorate Anna’s interment in the columbarium outside Village Lutheran Church on October 10, at 10:00 a.m. 10/10 at 10. After the simple service of prayer and song, we will go back to our house to plant bulbs (in my grief, shortly after Anna was gone, I bought nearly 300!), so the yard will vibrate with color on what would have been Anna’s first birthday. We will also plant Anna’s blue spruce tree. Anyone is welcome. I know many of you will not be able to join us for that day, so we’d like to ask you to join us in spirit. At 10:00 a.m., please take a minute to remember her, pray or honor her in whatever way is meaningful to you.

Four days later, on October 14, it will be 80 days without Anna. It will be hard. We will need all the salty people we can get.

I Want to Talk About Anna

_about to laughI realize that no one knows what to say the first time they see me – whether back at work or since the funeral. It’s OK. There really is nothing to say. It’s OK to say, “How are you?” Even though we both know I’m not good. So, when you see me, you can say, “How are you?” And I’ll probably say, “As good as can be expected.” Or, “I’m alright.” Or, “I’m OK.” So there, we just had the conversation. That wasn’t so bad.

It’s also fine to get right to work. I understand that life has to go on, and that a lot of life went on while I was in deep grief that I have to catch up on. So, if we work together, it’s OK to say, “Did you finish your budget yet?” without saying anything else to reference Anna and our loss. I really do care about my job, about the work of fighting cancer, and I still think it is important work.

I am still me. Which is to say, I am still someone who cares about you. (That is, if I did care about you before. I’m also not a saint, so, if I did not care about you and your problems before, I probably still do not care about you and your problems.) But if I did care about you before, I still care about you and it is OK to talk about yourself, your life, your problems. You do not have to preface it with the disclaimer that you know your problems are not as bad as mine. Each of us puts our own life on the same spectrum. Your worst experience feels as bad to you as my worst experience feels to me. (Within reason, of course. If your worst experience has been, say, ruining your manicure, I think we can agree that I feel worse.) Until I lost Anna, the worst thing that happened to me – and it felt really, really painful at the time – was having a sick baby. If nothing worse ever happened to me, I would think that was really, really terrible … because it was. Just like your bad experience, bad day, bad relationship is really, really terrible for you. And I like you, so I want to help you, even just by listening.

Here’s the other thing, if you see me, please know that I want to talk about Anna. I think about her all the time. I remember when my friend Greg lost his mom that I really wanted to talk to him about her. I didn’t want to ignore his grief and pain, but I could not for the life of me think of how to bring her up, since I didn’t know her very well. I think others feel that way about me now. So here are some conversation starters, so we can talk about Anna:

  • “I thought of Anna the other day, and even though I never got to meet her, I felt so sorry that she’s gone.”
  • “One of my happiest Anna memories was when …”
  • “How was it … going back to work?” or “… putting her things away?” or “… having the holidays without her?” [Really, you’re not going to remind me of a sad time by bringing it up. Believe me, I remember it anyway. And I’d rather share my sadness – or my joy – rather than keep it to myself.]
  • “I wish Anna was here right now because …”
  • “Do you remember the day I met Anna?”
  • “What would you have dressed Anna up as for Halloween?”
  • “I wonder how Christmas (or camp, or vacation, or this party) would have been different with Anna here?”
  • “Nora is so cute. Do you think Anna would have grown up to look more like her or Henry?”
  • “I like seeing babies because they remind me of Anna.”
  • “Every time I see you I think about Anna. How are you doing?”
  • “I hope you got my card. I want you to know I really felt sorry for your loss.” [This is especially helpful – the “I hope you got my …” or “I hope you liked the …” statements. Because although I try to remember exactly who sent what, I do forget. And I really would like to thank you in person.]
  • “Anna would have been X months/years old today. I wonder what she would have been like. I think she would have been …”
  • “It has been X months/years since we lost Anna. It must still be so hard.”
  • “What are you thinking about?” [Clever! Because you know I’m thinking about Anna.]

Let me just say that all of this advice is directly pertinent to me. I have no idea if other people who are grieving feel the same way. My guess is that they probably want to talk about their loved one, too, but maybe these aren’t good questions for them. For me, it is almost impossible to say the wrong thing, as long as it is coming from the heart. If your goal is to comfort me, I appreciate the effort.

In the first week after we lost Anna, someone (maybe the funeral home?) gave us a photocopied sheet of inappropriate things people might say and suggested responses. I titled it the “How to Say Eff-Off Without Swearing” brochure. I threw away the document, but I remember one of the exchanges was something like this:

Inappropriate comment:  “I’m sorry you lost your baby but at least she’s in a better place now.”

Suggested response: “The best place for my baby is in my arms.”

Ouch. The person was just trying to make you feel better. They probably don’t deserve a zinger. And really, is there really any right thing to say? Believe me, there is certainly nothing you can say to make me feel better. Just having you in my life and knowing you care and are thinking about Anna too helps. Sometimes the most helpful thing is silence.

I try to do something specific to remember or honor Anna on the 8th and 26th of every month – the day we got her and the day we lost her. I am almost beyond thinking of her more consciously every Friday (hello) and every Sunday (good bye) – but that’s mostly because I can’t keep track of the days of the week. Feel free on those days just to say, “I’m thinking of Anna today, too.” It helps just to know we are not alone in all this.

We are planning Anna’s interment (when her ashes will be placed in the columbarium outside the church) for some time in October. We will have a simple service of prayer and remembering, and then go back to our house to plant spring bulbs (in my grief I bought 300!) so that the garden is alive with color on what would have been Anna’s one-year birthday. We may bless – or plant – her blue spruce that day, too. I’ll post the date when we figure it out. We’re just waiting for the plaque that will be placed on the outside of the columbarium to come in.

We also started a “I’m a Fan ‘a Anna” group on Facebook. Check it out – the only requirement to join is that you are inspired by Anna’s short, sweet life. And that girl was nothing if not inspiring. I sure do miss her.

Blessings

_I'm goin' home 2colorAs an adult, there are two times that I have cried absolutely uncontrollably – gasping for breath, pulling my hair. Fetal position. Wailing. Times when my heart literally could not contain the heartache.

The first time, Anna was three days old, in the NICU. I was tired, post partum hormones high. I had just pumped a paltry 30 ml of colostrum. When I brought it to the NICU to feed Anna, they informed me that I could not go in – shift change. I protested, knowing she would be hungry. The nurse who was responsible for Anna came out. She told me not to worry, because she had just given Anna 50 ml of formula. Anna didn’t need me right now. I was stunned. I had requested to be the one to feed Anna. I requested that she only get breast milk. It is not that I wouldn’t have agreed with these decisions … they just were not my decisions. I didn’t have control. My baby was sick … and I couldn’t help her.

After expressing my requests more firmly to the NICU team, I stumbled into the bathroom nearby and literally fell apart on the floor. There is something visceral, palpable, impenetrable about a mother’s love. It exists as a separate entity outside of the body. And when it is tested the entire body responds. I did not know – thankfully – how soon it would be tested again.

The second time was just 77 days later. The day we lost her. I wrote about the events of that day in detail but I don’t think I can ever relate the intensity of emotions I felt. When Anna’s cardiologist came to tell us that her heart had stopped I heard myself saying, “Nooo! Nooo! We need her back!” I saw my hands shaking. My body was responding biologically to a tremendous loss. I can type the words but it’s impossible to relate how lost within myself I was at that moment. I still do not know how Steve, who was right next to me, reacted. And that was before she was actually gone. At that point, we still had hope.

But it was not meant to be. All of our hope, all of our prayers, all of our love was not enough to save her. Her heart did not start again. When we said good bye and then left the room for the team to clean her up, I could barely walk. My legs were weak. My head was floating above my body. We made our way to the empty room next to Anna’s. I curled up in fetal position on the bench. My eyes clenched shut and my whole body cried. That was just the beginning of an emotional and physiological change in me from which I will never recover. That does not mean that I will not be ok. One day, I am sure I will be. But I will not recover. I will not be the same.

These two days, Sunday, May 10 (Mother’s Day, incidentally), and Sunday, July 26, are without a doubt the two worst days of my life. I needed to go into the depths of how those days felt in order to truly appreciate the precious gifts we were also given through this experience. In the midst of tragedy, there were moments of solace. And it is these moments that will save us.

When I got pregnant, I changed doctors so that I could deliver at Lawrence Hospital, the local hospital that had just cut the ribbon on a brand new maternity ward. The rooms were beautiful. After our tour, Steve commented that the NICU was not very sophisticated. I said, “What are the chances we’ll need the NICU, though?” So I stayed with the new practice. As my pregnancy progressed, I wasn’t very happy with the quality of care I was getting at the new practice, so after much consideration, I switched back to my old doctors and delivered at White Plains Hospital, where they have a level four NICU and an affiliation with Columbia.

Anna was born at White Plains Hospital on a Friday afternoon. On Saturday morning, when her heart murmur persisted, she was taken  for a sonogram of her heart. It just so happened that the pediatric cardiologist, Dr. Michael Snyder, was in the hospital that morning, and he decided to do the sonogram himself, rather than have the technician do it. That was a blessing. He immediately saw the gravity of the situation and correctly gave her a preliminary diagnosis of Noonan’s syndrome.

Delivering at White Plains and the lucky chance that Dr. Snyder was there and did the sonogram himself made all the difference in Anna’s early diagnosis and care. Blessings.

Eleven weeks later, when we took Anna to the pediatrician with a fever, she directed us to get a chest x-ray at the hospital. We had to decide between White Plains Hospital and Columbia Children’s Hospital. We chose Columbia. We decided to wait an hour, so I could feed Anna at home before she became stressed at the hospital. That was Steve’s idea. A good one, as it turned out. She was not dehydrated when she got the IV. The staff at Columbia’s emergency room was superb. She got excellent care and we understood what was happening every step of the way. I was able to hold her and sing to her the entire time. All blessings.

From the emergency room, Anna was admitted to the pediatric cardiac ICU. People bring their children from around the world to be treated there. Anna’s cardiologist, Dr. Snyder, was on rotation the whole time we were there (I believe he is only there one week a month). Having treated her since she was twelve hours old, he knew Anna’s entire medical history. Another blessing.

The staff on the cardiac PICU has immense respect for parents and an incredible combined amount of medical expertise. We do not have a single doubt about her care from the moment we set foot in the hospital. I truly, truly cannot imagine the agony we would be in if we did not have this sense of confidence.  An incredible blessing. And probably one that will save our marriage, our sanity … our faith.

Anna’s last night on earth was a good one. She nursed well. She slept soundly on my chest. I held her, Steve was right there. For those few last hours, we were good. An incredible gift. An incredible blessing.

Steve had gone home the morning of July 26 to spend some time with Nora and Henry. After he was gone, I felt things were getting worse, so I called my mom to come and keep Anna and me company. She got there in time to sing to Anna and hold her. Steve returned just as we left the room for the intubation. He called our pastor, Rev. Dr. Robert Hartwell, to come, but the call was unnecessary. Rob was already on his way, with our best friend Betty (Betty had been on her way to the hospital when she passed Rob on his bike. She stopped to tell him where she was going and he said, “I think I should go with you.” So he did.) Rob got there even before the hospital priest arrived from a few floors away. He baptized Anna in the name of the Father, the Son and the Holy Spirit while we watched through the window.

Without a doubt, God intended for those people to be with us during those darkest hours of our lives. My mother, my best friend (who is also a counselor) and our pastor. Later, our friend Grant (Betty’s husband) arrived, and our other minister, Deric. It was a circle of strength and love like I have never experienced. Anna was baptized and we had an amazing support system there. Blessings.

What would have happened if Anna had not gotten a urinary tract infection? We can only speculate. Probably we would have taken her in for her planned cardiology appointment the following week (July 28) and would have discovered then how quickly her heart was deteriorating. We would have scheduled her surgery as soon as possible. And then she either would not have made it to the surgery or she would not have survived it. Steve and I have discussed many times how excruciating it would have been if her decline had started at home. We would have spent the rest of our lives second-guessing our decisions – what hospital, what route, when to leave. But we don’t have to. A blessing.

I imagine guilt, doubt and blame as tiny drips of water seeping into a cold sidewalk – almost unnoticeable going in but when they freeze, the crack begins. And grows … and grows … until the sidewalk is no longer safely passable. I am immensely grateful to be free of those demons. Time will tell if this confidence holds but for now it is a tremendous comfort.

We are not ok. We are not better. But we are blessed.

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