Mother of Nora:
Shortly after the birth of my daughter, I received a very meaningful letter from an old friend.
Though we grew up in the same small town in Upstate New York – only a single street apart, in fact – we have both since moved far away. Marie, her husband, and now two little boys reside in Michigan; my husband and I live in New Mexico.
At the time, I thought typing out a response to her letter in my phone would be the best way to organize my thoughts before putting a pen to paper. I am so thankful I did, because now I have record of this exchange between two mothers.
To date, I feel that this is the best way I have ever concisely told Nora’s story. And it is how I’d like to share her story with the world.
Marie,
I can’t begin to explain how good it was to hear from you, and I’m so glad word got back to you about our little girl. I feel like it was just yesterday we were chatting about when to even know that it’s the right time to have a baby.
I’m not sure how much detail Victoria went into regarding the circumstances of Nora’s death, so forgive me if you’ve already heard all this.
I found out I was pregnant with Nora in October. After a year of trying, it finally happened! I have never felt such joy and terror simultaneously the way I did in that moment; you know the feeling.
At my 9 week appointment, the OB sat us down and told us she was already noticing abnormalities in Nora’s development.
Looking back, I almost feel like I knew deep down what was going to happen; I had tunnel vision, and couldn’t even really hear what the doctor was saying.
She immediately referred us to a specialist (Maternal Fetal Medicine), and ultimately, Vincent and I opted for a non-invasive genetic screening test to see if we could get any answers.
The test came back positive for monosomy X, meaning Nora was missing her second sex chromosome. Rather than being XX or XY, she was simply X0. I remember crying on the phone with our genetic counselor not because I was upset by the results, but because I was so overwhelmed with joy knowing we were having a little girl.
Obviously, the results of the test didn’t change anything for us (nothing could have ever prevented us from giving this baby every last chance at life).
Monosomy X manifests as a condition called Turner Syndrome, which, isn’t necessarily incompatible with life. We just thought we might have a baby with some special needs, and that wasn’t anything we couldn’t handle.
But as the weeks went on, her condition just didn’t improve the way that it needed to in order for her body to be able to sustain her outside of me. At our early anatomy scan around 18 weeks, they found a ventricular septal defect and hypoplastic left heart.
They told us Nora’s heart was no longer beating at 21 weeks and 2 days. I was induced on a Tuesday and had her at 2:39 in the morning on February 9th. She weighed 1 pound 1 ounce and was 9 inches long.
The one thing I want you to know is something I tell everyone I talk to about Nora; even if I knew exactly how this whole thing was going to play out, even if I had known what was going to happen before it did, I would do it all over again.
Without a single doubt in my mind. Nora is my perfect daughter, and despite my heartbreak, she gives me so much joy. She taught me more about myself than I could have ever imagined knowing.
She showed me that I could go through the absolute hell of losing a child and still come out the other side. She showed me that I could be strong enough to labor and deliver, and handle a level of pain that I never believed I could.
She gave me the breastmilk that I was able to pump and donate to other babies who needed it. She made the love of my life a father. And most importantly, she made me a mother.
The beautiful thing about our families is that despite the differences in our faiths, we are both able to live in the comfort of knowing the love and mercy of Jesus. Our baby girl is in a place that is free of the pain and suffering that fills the world we live in.
All my fear of death and dying has completely vanished, because I know that leaving this Earth means I will get to hold her again.
I’m including one of the prayer cards from Nora’s funeral for you. We don’t have many left, but I know you are someone who will cherish it and believe the words it holds. Please continue to pray for her little soul as we approach her due date, June 18th.
And if you ever find yourself back home in New York, please let me know. It would make me so happy if you were able to meet her where she rests, at St. Anthony’s Cemetery in Glenville.
Give your beautiful little boy an extra hug and kiss for me.
All my love,
Lauren
This blog was written by Lauren Fulgieri in Albuquerque, New Mexico. Lauren has been married to her husband, Vincent, for five years and together for thirteen. Together they have a daughter, Nora, who is in heaven.