Tuesday, July 21, 2009

Our letter to Frannie

Many thanks to all of you who were able to join us this past Sunday for Frannie's memorial service. We were honored to have you with us to celebrate Frannie's life. A very special thanks goes to our generous and talented friends who shared their gifts in order to make the service such a fitting and loving tribute. Zac, Laura, Heather, Paul, Dan, Kristen and Jason - you are treasures to our family.

A number of people have asked that Matt and I post the letter to Frannie that we composed for the service, and we've been touched by those requests. Accordingly, we share the letter below. Peace to all.

Our dearest Frannie,

As we gather with our friends and family to honor you, our hearts are shattered and our pain knows no depths.

Never has there been a baby more wanted and more loved than you. Through many difficult challenges and with much assistance, we worked so hard to bring you into the world. We longed to meet you. And then you were here, fulfilling a fervent dream we’d had for so long. Letting you go after such a short time on this earth was, by leaps and bounds, the hardest thing we’ve ever had to do.

We mourn the loss of our time with you, and ache that we’ll never get to know you, never get to snuggle with you and read you bedtime stories, never get to take you to the zoo or the park, never get to watch “The Sound of Music” or sing songs with you, never get to watch you grow and learn. We mourn the loss of Ellie’s time with you, as she was so very excited and so ready to be your big sister. But also, we mourn the terrible loss of all the good you would have done in the world.

At the same time, we’re infinitely grateful for the gifts you gave us. You gave us the absolute happiest hours of our lives; because of you and your sister, we understand what it is to be unabashedly joyful. You reminded us what a good decision we made to spend our lives together, and you renewed our gratitude for that decision. You showed Ellie the happiness and gratification that comes with loving a sister.

But it was not only our lives that you touched; already, we are mindful of your multi-faceted impact. All who had the privilege to meet you, and many who didn’t, have been moved by your presence on this earth. You inspired parents to hug their kids a little tighter, to give them extra kisses, and to express their love more freely. You reminded people how fragile and unpredictable life is, and caused them to navigate their relationships differently in light of that reminder. You demonstrated that our time here is valuable, and must not be wasted. You evoked from people new levels of kindness, compassion, and empathy that they didn’t know they were capable of.

We know that as time goes on, we’ll continue to recognize all the ways your impact will be felt, and that gives us some comfort, but there is no denying that our pain will always be with us. Our view and experience of the world will always be different because we’ll never stop missing you, never stop thinking of you, never stop appreciating how you changed us. But our hope is that we will come to understand compassion, goodness, love, and grace in new and richer ways than we could have before – and that we will live differently because of it.

We commit to you that we will work to lead meaningful lives – lives full of love and purpose that would make you proud to be our daughter. We will seek earnestly to discern the ways that we can be instruments of good because of our experience as your parents. We know that this won’t always be easy, and so we ask for your help. We need you to watch over us and guide us as we move through our journey.

We look forward to the reunion of our souls someday, and until then entrust you to God, to Grandma Jo for whom you were named, and to all those loved ones who have gone before us.

As our friends Paul and Dan so beautifully noted, nothing here will ever be the same. You changed our world forever, and we will always celebrate your life with the deepest pride and love.

All our love to you, our precious baby girl.

Mommy and Daddy

Friday, July 17, 2009

So Many Layers of Grief

I’ve been reflecting over the past few days on the multiple dimensions of our grief. They range from the mundane to the profound, and even sometimes emerge in unexpected ways.

Take yesterday morning, for instance, when Matt and I took Ellie to the orthopaedic surgeon for what was to be the final check-up on her hips (aside: For those of you who don’t know, Ellie was born with hip dysplasia, had to wear a brace for nearly a year when she was a toddler, but appears to be totally fine now). We were supposed to have a simple X-ray, a quick chat with the doctor, and be out of there. For reasons that may be varied, Ellie was adamantly opposed to having the X-ray; she got very, very upset and said she was scared to lie on the table. The X-ray technician seemed a little annoyed by Ellie’s behavior, and suggested that sometimes with children of this age it’s necessary just to hold them down and push through it. Matt and I glanced at each other, me on the verge of a breakdown, and instantly we knew we were on the same page: no way were we going to force our little girl to do something she perceived as scary right now – not in the wake of this profound loss and trauma. Maybe she was just being a petulant, stubborn 4-year-old, but we felt like it was something more…that her behavior was in some way related to her recent experiences in hospitals. In any case, we didn’t want to traumatize her any further, so we ultimately decided to leave. I walked out of the building feeling sad and worried in new ways.

Another layer of this grief is the loss of what we envisioned our family would be. Frannie will not be with us (which is hard enough to swallow), but what’s more is that we won’t have any additional children, at least not biologically. While other families who experience the loss of an infant to random causes may go on to have healthy babies in the future, this really won't be an option for us. Since Frannie’s death, we’ve learned more about her particular disorder, CPS deficiency (http://rarediseasesnetwork.epi.usf.edu/ucdc/learnmore/definitions.htm). It is genetically transmitted in an autosomal recessive fashion, meaning that Matt and I are both carriers of a genetic mutation that we each passed on to Frannie. The risk of Matt and I producing a child with the disorder would be 25% in any given pregnancy, and we feel strongly that this risk is simply too high. While pre-natal diagnosis is possible, thus enabling immediate life-saving treatment in the hours after birth, CPS deficiency is still a chronic condition that is very difficult to manage, that causes immense suffering for children, and that often still results in serious developmental delays and death of young children. We are not willing to risk putting a child (and ourselves) through that pain when we have to ability to avoid it.

Finally, I can’t escape this feeling that the world is designed to torment me right now (even though, rationally, I understand that this is not the case). It feels like the number of pregnant women and families with healthy newborns has increased exponentially over the past 2 weeks; I see them everywhere, and sometimes I don’t just feel sad, but also angry. Yesterday Matt and I were in a coffee shop and it so happened that a guy was sitting next to us, working at his laptop, with a baby in a stroller next to him. The guy (presumably the baby’s father) went for long periods of time without so much as a glance at the lovely, cooing baby. After 15 minutes or so, the baby got a little cranky, at which point the guy reached over and attached a little toy bar to the baby’s seat and then propped up a bottle on the toy bar so that the baby, who didn’t yet have great hand control, could “feed herself.” The guy then went back to his work, without a word. Ordinarily, I might applaud this guy’s mastery of multi-tasking, or think how clever it is that he came up with the bottle-propping trick. Instead, at this moment I wanted to scream at him for being negligent, for not understanding how precious this time is with his healthy baby. I wanted to tell him how undeserving he is. And then I wanted to punch him. Totally unfair judgments, I know. But these are the real manifestations of my grief.

Thursday, July 9, 2009

One Step at a Time

Matt and I have been overwhelmed and humbled by the outpouring of support we’ve received from so many of you over the past week. The emails, messages, cards, flowers, and meals are holding us together right now; please know how much we appreciate each kind word, each expression of compassion. Every day, every step, is painful. It occurred to me yesterday that more time had passed since Frannie’s death than we were able to spend with her in her short life, and it just blows my mind. We miss our baby so much. But we believe our family will get through this. Although we cannot yet see the light, we have faith that it’s there.

We want to share that we now have firm plans for Frannie’s memorial service. The service will be held at 2:00 p.m. on Sunday, July 19 at Trinity Presbyterian Church. We welcome anyone who wishes to celebrate our precious daughter’s life.

In other news, as many of you know, our family had planned a move to New York at the end of this month. Matt and I feel it would be a horrible mistake to uproot Ellie so soon after experiencing this trauma, so we’ve put the move on hold. Luckily, I’ve received official word from my new department chair that they can delay my appointment until the spring semester of 2010. We are so grateful and relieved to be able to remain in the midst of our support system as we work through our grief. Also, thanks to the kindness and flexibility of the folks at Linden Waldorf School, Ellie will return this fall to the loving arms of her teachers and classmates. We believe this will aid her (and our) healing.

Monday, July 6, 2009

Francesca Josephine: June 29, 2009-July 3, 2009

With the heaviest of hearts, I share the news that our sweet Baby Frannie passed away early Friday morning at Vanderbilt Children’s Hospital. She came into the world a seemingly healthy baby girl on Monday, and in so doing gave us the happiest day of our lives. Unfortunately, we later learned that Frannie was born with a rare disorder of the urea cycle, a fatal inborn error of metabolism. This disorder causes a toxic buildup of ammonia in the blood, leading to irreversible brain damage and death.

Many times, infant deaths of this type go unexplained. We are fortunate that Vanderbilt is one of the few research centers in the country working on urea cycle disorders, as we were able to meet with a team of highly trained geneticists in the field to understand what was happening. We received wonderfully compassionate care from top-notch physicians and nurses throughout the horrific process, and are grateful for that.

Our deepest thanks to all those who have offered love and support this week. Matt, Ellie, and I are experiencing the greatest suffering and grief we have ever known. We ask for continued prayers, meditations, and positive thoughts as we move through this dark journey together.

We are beginning to work on plans for a memorial service to honor Frannie's life, and will post information here as the details fall into place.

In the meantime, some have asked about tangible ways to support us and to honor Frannie. In lieu of flowers, we'd like to request that people consider making a donation to the Vanderbilt Children's Hospital (http://www.vanderbiltchildrens.com/interior.php?mid=40) or to the National Urea Cycle Disorders Foundation (http://www.nucdf.org/support_our_mission.html).