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_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.

Life After Anna

_wow_shes_cute_17squareIt has been thirty days since we lost Anna. Tomorrow, August 26, it will be one month. It is still hard to say — or write — “she died.” “We lost her” is all I can manage. How are we doing? I don’t know. When we are able to step outside ourselves for a moment, we can acknowledge that this tragedy has not only brought great pain, but also great love, great generosity, great faith. We have experienced the support of our friends, family and colleagues as we never imagined possible … and never imagined necessary.

The progression of our grief over the past thirty days has been momentous. In the first days, we were truly in a fog. The grief was debilitating. When we weren’t crying, we felt Anna’s absence emanating from every inch of the house. At one week, we went to Target. (We bought car seats for the kids, because amidst all the activity, they inadvertently got delivered to Goodwill.) At two weeks, my pain at having to suddenly stop nursing abated (although the milk is still not gone). At three weeks, we could sing again. Last Saturday, I dreamed about Anna for the first time. Steve was holding her and I kissed her. I awoke feeling peaceful. Yesterday, we went for a walk, our first without Anna. Still a family of five, but only four on earth.

There are times we can laugh. I have learned that laughter — true, unexpected laughter — feels like breathing in sunshine. Light, clean, beautiful. It probably always felt that way, but I only just noticed because it stands in such contrast to my prevailing emotions. There are times we can forget for a moment. Or, not really forget but rather place our sadness to the side … move around it. But it is always there. This is hiding-around-every-corner grief … punched-in-the-stomach grief. Losing Anna is physically painful. My heart literally aches. In the first weeks, for a just a millisecond before I could stop myself, my arms would tingle and I would feel an adrenaline rush thinking, “Oh no! Who has the baby?” Because as mothers we are biologically programmed to protect our children … and my circuits were misfiring.

The morning after we lost Anna I picked up a card we received when she was born. It related support for the tough time we were having with Anna’s health. And for a moment I thought to myself, “Why were we upset before? Why did people feel bad for us?” For that second, I honestly didn’t remember. Momentous loss instantly puts life in perspective. Instantly. But that reaction also was an indicator of how Anna had already changed us. She truly taught us to love without limitation. We were beyond the pain of any diagnosis she had received. We were ready to care for her for the rest of our lives if that was what she needed. We were getting her early intervention services and tackling her issues one by one. We loved Anna completely, completely as she was. And to lose her in that moment was — is — excruciating.

This experience has also fundamentally changed our outlook on life. I have lived my personal and professional life knowing there is a solution to every problem. Steve is the same way. Nothing was impossible. And now we are stuck in the middle of an agony we never could have imagined. And there is no solution. There is no way to get her back. There is no end to this suffering. Except to wait for it to abate. That’s the only hope we have. That this pain will subside. That bit by bit, normalcy will regain a foothold. But at the same time, we do not want to feel less pain at her loss. Though it is not the “right” response, part of me feels that Anna deserves our total devastation.

It’s hard for me to speak for him but I think Steve and I are about in the same place, which is to say we’re just stumbling through this darkness from moment to moment. He is strong, I am weak. I am strong, he is weak. Sometimes, we’re both a mess. And there are times when life almost seems normal for little while. An old friend wrote to us the other day to say that she is praying for us, and specifically praying for our marriage. I like that. Because while Steve and I are doing fine, I can see how either of us could easily become lost in our own grief. The anger and frustration at being caught in such despair could easily be misdirected at each other. I know I have been less patient, even though I try not to be. The kids end up on the receiving end of that, too. It’s hard. So we appreciate the prayers.

Nora and Henry are each handling Anna’s loss in their own way. Nora really absorbs the emotions of Steve and me. She cries when we cry and is sad when we are sad. But that’s not to deny her own experience. She misses Anna. The other night, I went into Nora’s room because she was crying. She asked me to tell her again who is in heaven with Anna. I told her about her great grandparents, the dogs I had growing up, my friend Angela’s kitty. Nora listened to all this and started crying again. “But now Anna won’t match.” I said, “You mean her healthy body in heaven won’t match the one she had here on earth?” “No,” she said. “No one will dress her to match me.” It is small, but for Nora it is big.

It’s harder to know what’s going on with Henry. Steve and I discussed in the early days how little Henry truly seems to grasp about the whole situation. We thought that if we brought Anna in the door tomorrow, Henry would probably ask a couple of questions and then go on like she had never left. That was reinforced last week when Henry watched the Anna video with Steve. I asked Henry how Daddy was doing. Henry said, “He’s sad about Anna. But it’s OK. She will be home soon.”

In the beginning, Henry was just trying hard to process everything that was going on around him. He wouldn’t talk about Anna, but he liked to watch her video. He has also reverted to his previous separation anxiety and would not go to his last two dance classes. Yesterday, we stopped at the playground halfway through our walk. Nora and Henry were on a big tire swing. This was their conversation:

Nora: We could fit one more person on the tire swing
Henry: Yeah, like if Anna grew up
Nora: That would be good.
Henry: Yeah!
Nora: Yeah, but she’s in heaven … too bad, right?
Henry: Yeah.

And they went on swinging.

We thank God every day for Nora and Henry. They get us out of bed. They make us laugh. They make us make breakfast. And lunch. And dinner. And several snacks. They want to play. They want to go to the pool. And always, Henry wants to go to the zoo. So … we do. And just by the mere act of doing normal things, we become a little more normal. New normal. Normal that encompasses loss. Normal that does not forget but does function.

Eleven-and-a-half weeks with Anna was not long enough. And yet it was so long. The words Steve used to describe Anna’s life in her eulogy ring in my ears, “Eighty long days.” I can imagine people thinking that maybe we didn’t really know Anna. That she was so young … that her personality had not emerged. And that is my biggest fear. Because we did know her. She was a real person. A unique person. She was sweet and smart and funny. Our lives realigned around her. And we loved her. And she loved each of us.

Her life had meaning because she was part of this world. She was part of our goodness. Part of our tragedy. Anna was — is — part of each of us. I said in my last update that Anna changed the world. I said that when our immense sorrow faded, we would be united in goodness. We need this to be true. So we are specifically asking every person who reads Anna’s story to add to the goodness in the world. Magnify your talent. Eliminate a vice. Help someone. Make sure the people you love know you love them. Say something. Do something. Be something. Do it for Anna.

Steve created a Web site,, and soon you will be able to record there how Anna changed your life. We hope she did.

I said in the beginning that we are overwhelmed … awed … by the strength and generosity of our family, friends and colleagues. We can never, ever thank you enough. You truly sustained us in this first month. We’re going to need you for a long time. Amid this disabling grief that we never expected, we feel oddly blessed, too.

Jenn, Steve, Nora & Henry

Don’t be afraid for I am with you. Do not be dismayed for I am your God. I will strengthen you. I will help you. I will uphold you with my victorious right hand.
Isaiah 41:10

P.S. For the next year we’re going to write a weekly blog that can be accessed through our site, I hope that in some small way it will help us get through this. On our site, you can also see Anna’s whole story, pictures of the small miracles we’ve witnessed since she went to heaven, and other things from our life with her.

P.P.S. We also have two ongoing projects. One is to fill our yard with natural tributes to Anna. We received a magnolia tree that is planted in the side yard, there is ivy from a flower basket growing in the back and we planted the hydrangea tree we bought for her memorial service on the fence line. Many of you have asked about giving us money for a tree or something else to plant. Because we have a small yard we would like to pool those donations and plant a blue spruce or another evergreen in the corner of our yard. I envision decorating it every Christmas, and hiding eggs under it every Easter. (I realize the kids will catch on pretty fast.) So come visit the yard — and us — any time.

The other project is the card map. We have been supported and uplifted by the sheer volume of condolence cards we have received. We were humbled that first day when Steve opened the mailbox and found a dozen cards. And then they kept coming and coming. It is a testament to the power of one small life. The stories and messages of support from friends and even strangers is amazing. It started us thinking that maybe we have gotten a card from every state in the country. We’re going to create an online map on our site this week to record all those letters. Take a look. And if it turns out that we’re missing a state, would you forward Anna’s story to someone you know there? I know it is small, but somehow the process feels therapeutic.


DSC03981_composite_squareHaving Anna changed our lives. Losing Anna changed our lives. This blog will chronicle the odyssey from where we are now to wherever we will be — emotionally, physically, spiritually — one year from now.