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Today is a national day of remembrance for pregnancy and infant loss (http://www.october15th.com/). I’d never heard of such an occasion until last year when some friends of a friend lost their baby a few days after birth, similar to the shocking way in which we lost Frannie. In observance of the day, they asked their friends and family to light a candle in memory of their daughter, and I just loved that idea. Maybe it’s the concept of a burning light that resonates so much, because I know that Frannie’s light is with me every day.

Tonight I’ll light a candle to honor Frannie, as well as the three babies we lost through miscarriage. And I’ll be thinking also of all the families out there whose dreams have been shattered by miscarriages, stillbirth, or neonatal death. May our love for these precious ones be a warm, glowing light in the world, and may we strive always to be sensitive to one another’s suffering.

Posted by Lyndi at 2:28 PM 6 comments: 
Two Months Today marks two months since we lost Frannie. Matt and I were talking last night about how it feels like ages ago in some ways, while in other ways it feels like time has been standing still. My mind so readily returns to the vivid, awful memories of being in the hospital as the news just got worse and worse. And then being with Frannie in those last hours, saying goodbye to her with our family and close friends, and finally returning home on that Friday morning with empty arms. Remembering the details of those days is excruciating, but it feels so important. Yes, it’s painful, but if the alternative is forgetting, then I choose the pain.

Today is also when I would’ve been teaching my first class at Hofstra. Days like this make my head spin and my heart hurt more than usual. Brought into sharp relief is the fact that this is SO not the way my life was supposed to be. I had similar feelings when we moved out of our house last month; while we would’ve been moving on the very same day, our destination should’ve been very different. Instead of being a family of three moving 20 minutes down the road, we should have been a family of four on the way to our new home in Hempstead, NY. I had envisioned what a challenging yet exciting adventure it would be to drive across the country with a four-year-old and a newborn; thinking back on those visions now, I can’t believe how much I took for granted.

It’s clear to me that I’m a new person in many ways. I seem to have developed new, highly sensitive receptors for human suffering. I see it and feel it everywhere, all the time. When I read the news, when I hear a story from a friend, when I sit in the waiting room at the doctor’s office, when I walk through the grocery store. I mean I really feel it. A fountain of emotion has opened up within me that may never fully close, and I suspect that this will be both a blessing and a curse.

But it would be inaccurate to describe this time in our lives as defined wholly by loss and pain. On the contrary, Matt and I have marveled at and been humbled by the compassion we’ve witnessed. So many people, sometimes in the midst of their own grief, have reached out to us with love and support. To everyone who has sent us cards, provided meals, pointed us to resources, listened to us when we needed to talk, checked on us with calls or emails, prayed and meditated on our behalf, and given us shelter (literally or figuratively), please know what a gift you are in our lives. We feel you all holding us in the light, and we’re so, so grateful.

What’s more is that we understand in a very real way the double-edged sword of loving deeply. We couldn’t have been any more joyful when Frannie was born. Seeing Ellie hold her for the first time, with so much tenderness, will forever be the highlight of my life. It’s only because of the depth and intensity of our love and joy that we now feel such intense pain. Therein lies the rub, of course. The possibility of loss is a risk we take when we love. But as awful as I feel on days like this, I know that the love is worth it.

Posted by Lyndi at 7:30 PM 5 comments: 
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,

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.

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.


Posted by Lyndi at 11:49 AM 7 comments: 
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.

Posted by Lyndi at 6:25 AM 4 comments: 

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.

Posted by Lyndi at 4:47 AM 4 comments: 
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).
Posted by Lyndi at 4:05 AM 26 comments: