13 years ago I was on bed rest, pregnant with identical twin girls in a pregnancy complicated by twin-to-twin transfusion syndrome. Leah died in-utero at 27 weeks’ gestation. Naomi went into distress a week later and I had an emergency c-section at 28 weeks.
CLIMB and online support groups have been the key to helping our family to heal and continue our lives while celebrating Naomi’s survival and honoring Leah’s memory. While pregnant with the girls I imagined the day they would become Bat Mitzvah together. After Leah’s death I dreaded their Bat Mitzvah, knowing that it would be the ultimate bittersweet day: a celebration of Naomi’s survival and triumph over her early birth and the deep sadness at Leah’s absence.
Through the years we have spoken openly about Leah, visited the cemetery regularly and set a tone for our 4 living children, extended family and friends, that Leah is an honored and remembered part of our family.
We faced the dilemma of how to make Naomi’s Bat Mitzvah her special day while not ignoring Leah. Naomi chose to use a yad (pointer) to read from the Torah that she made and had both of their names on it. She asked the Rabbi to explain the significance of her yad. That simple statement let everyone know that Leah was there with us in spirit, but it was Naomi’s day.
In order to be ready for Naomi’s day we decided to go to the cemetery a few days before the Bat Mitzvah and remember and mourn for Leah as a family, with our Rabbi also in attendance. I was inspired to think about what I have learned and how I have changed over the past 13 years and I wrote this piece that I read at the cemetery.
When I was pregnant with Naomi and Leah, and knew that both of their lives were in danger, and I did not know if I would get to raise either of these tiny daughters- I would listen often to Debbie Friedman singing the Mishaberach (prayer for healing) prayer.
At night, when I could not sleep I would look out the window at the moon and wonder, if there really was a god, would my babies be spared? I wondered why a merciful god would punish them, or if I could have done something bad enough for god to punish my babies this way. Would they be healed?
After Leah’s death and Naomi’s premature birth I wondered why my prayer for their healing had gone unanswered. I was sad and oh so very angry for what my babies, Jim and I, and Ariela and Miriam had gone through. I did not understand why this had happened. Why believe in god, or anything for that matter, when this tragedy could have happened? I was shaken to my core.
I stand here now, at Leah’s grave, almost 13 years later, anticipating a day that I briefly dreamed about, Naomi and Leah becoming Bat Mitzvah together, and a day that became one I would dread, for I did not know how I could celebrate without Leah here with us.
Well, here we are. And I still feel the sadness and even some anger that Leah is not here with us. But I now know that the healing I prayed for has happened, just not in the way that I thought it would. Prayer could not heal the twin-to-twin transfusion that killed Leah and caused Naomi’s prematurity, but it could help me find my way on a journey of healing.
Healing has meant learning that I am not in control of what happens to me or my children, but still having enough faith to get up each morning and send them to school and let them cross the street (or go to Guatemala or Ecuador or sleep-away camp).
Healing has meant accepting that things go wrong in nature, like Naomi and Leah’s twin-to-twin transfusion syndrome, and knowing that modern medicine may not know how to fix it.
Healing has meant having the strength to overcome profound sadness and depression because I had a family who loved me so and needed me.
Healing has meant experiencing the profound and true love of my husband who cradled and sang to his stillborn daughter in the delivery room and carried her tiny coffin to this grave for burial because it is was his responsibility to do that.
Healing has meant working together as a family to guard the health and promote the development of its youngest and most frail member in order to watch her grow and thrive into an almost 13 year old Bat Mitzvah.
Healing has meant knowing that you still have love that must be shared with another baby and bringing him into our family and receiving the gift of his love and his smile.
Healing means being strong enough to share our experience with other families and let them know that they are not alone and that there is a path to happiness again, even in the face of loss and despair.
I thought my prayers had gone unanswered. I learned that prayers are not always answered in the way that we want them to be. And that it takes hard work, love and some faith to be open to seeing how those prayers were answered.
I stand here ready to celebrate Naomi, her amazing accomplishments and the beautiful person she has become and all that she has yet to do.
Talking to Naomi…
PAM: Naomi, for a long time we weren’t sure that we would get to stand here together today – us bursting with pride, you with relief.
JIM: At first, we worried that you would not breathe. Then we worried that you would not speak. Then we worried that you would not grow. Then we worried that you would not learn.
PAM: We are not ready to stop worrying. But here we are: we are here, together, celebrating you and this day and all it stands for. You. You are a force of nature – full of energy and emotion and love and, yes, breath and words. You are growing everyday – in height (a little), in complexity and sophistication (a lot) – and you are learning every moment, both the kinds of things you learn in school and the kinds of things you learn in life.
JIM: Tradition notwithstanding, we don’t really think this is the time or place to have a heart-to-heart conversation. The morning is longer than any of our attention spans. The party is waiting. And you are just 12 years old – not the age for getting life lessons in the form of a speech.
PAM: So we will just tell a story, and be done. When it was time to name you, we knew your first name would be Naomi, after your great-grandfather Nat, who was then nearing 100 years old. We didn’t have a middle name in mind, but decided we wanted a name that people use in Israel. We asked your Aunt Su for some ideas, and the list she sent back included Tikvah.
JIM: Tikvah, of course, means hope. And hope was what we needed when you were born. Hope that you would be OK. Hope that all of us would be OK, after Leah’s death and amid your struggle for life.
PAM: It turned out to be the perfect name.
JIM: Naomi, you fill us with hope. Everything you accomplish – every song you sing or dance move you invent, every test you pass or trick you master in the gym, every friend you make, even every text you send – is proof that it’s worth taking the chance, the risk, to hope. That is the great gift you’ve given us, one that we are proud to share with everyone in this sacred space today. We are bursting with pride, and love – and, thanks to you, Naomi, overflowing with hope.
Dear Parents of CLIMB,
Hi. My name is Naomi S. I am twelve years old and live in New Jersey. I love to read books and run. Before I was born I got a disease called Twin to Twin Transfusion Syndrome. My twin sister Leah did not survive. I have lived knowing this my whole life. Living with knowing I had a twin sister can sometimes be really hard. Living with a best friend who has a twin brother and whose younger siblings are twins can be hard too. But knowing is what the surviving babies need. It’s good for the kids to know so they can trust you. Whenever there’s a life event coming up like my bat mitzvah, or my birthday I think of Leah. In my room there is a picture of Leah and me. I have breathing tubes in my nose and huge baby soft eyes. Leah is just lying there quietly as if she were asleep like me. We are both bundled up in numerous blankets. It reminds me that I am lucky to be here right now writing this letter. My parents have never held back when I have asked them about Leah or my prematurity. That is why I know how to take care of myself. There are also many ways to remember the child you lost. You can go to the cemetery a lot and bring flowers. You can light a candle in their memory. You can do whatever feels right to you and your family. I hope that because of this letter I have given you the courage you need to never give up.