Just one week from tomorrow will mark what would have been my daughter’s 32nd birthday. Her name was Jacquelyn Anne. She was my first child, my daughter, and was born with a neural tube defect called “anencephaly.” We found out one week prior to her birth, that her neural tube never closed, and this resulted in severe spina bifida, and her brain never forming. She was stillborn on January 11, 1991.
An ultrasound the week prior to her birth alerted my physician, and she quickly called in another physician to have a look. “Should I be worried?” I asked her, but she reassured me and said not to worry until she told me I had reason to worry. Then, she handed me a piece of paper, a referral to an OB GYN with “rule out anencephaly” written on it, and sent me 150 miles away to Loma Linda Hospital, my appointment a couple of days later.
You cannot imagine what the next 48 hours were like.
I was in college. I missed class, and didn’t even realize it. My teacher called to see if I was okay. I still have my journal I kept from those days, and as mixed up as my thoughts were, they still make perfect sense to me.
The physician there at the hospital 150 miles away confirmed the diagnosis. “What now?” I remember asking Mary Small, MD. Even now, 32 years later, I can still hear her telling me that my daughter would not be able to sustain life without a brain, and that I should make plans anticipating she might be stillborn, or die shortly after being born. Next, she sent us by bus to see a genetic counselor down the street. I still don’t remember much from that appointment because I was in shock, but I do remember the counselor being very, very kind, and she is now my friend, and has been for 32 years.
Again, you cannot imagine what the next few days were like. The shock. The disorientation. The grief.
For the next 31 years, not one January 11 has gone by that I have not cried. Not one.
Why am I writing this? I’m writing this because so often I read of some other Mom, 20 years old, or 30 years old, or 60 years old… having lost a child. And I am NOT writing this so that those who read it can send me “I’m sorry for your loss,” comments. I’m not. In fact, as each of the past, probably 10 years have gone by, I’ve become less and less willing to share on that date because I don’t WANT the “I’m sorry for your loss,” comments. It’s been 32 years. Moms who’ve lost babies more recently deserve those comments, not me. My baby was stillborn. I never knew her outside of the womb, except for the few short hours I was allowed to caress the side of her sweet face with my hand, and cuddle her close in my horribly aching arms.
Did you know that there really and truly is such a thing as aching arms when a Mom loses her baby?
Recently my friend lost her 8 year old son. She frequently reminds us to say his name. Say it. Talk about him. Remember him.
I really love that.
Not only on January 11 do I remember Jacquelyn Anne. I remember her every time someone says, “You have two sons?” Silently, I think to myself, “Yes, and I have a daughter, too.” But I don’t share that. It’s been 32 years. Or, “Aw, you never had any daughters, huh?” or “How many children do you have?” Questions like these are always, even 32 years later, a reminder of that day, a reminder of who I don’t have. There are four people in my family, not five. I have two children, not three. Every time I buy my granddaughters a new dress, I remember that I never got to pick them out for Jacquelyn. When I take care of a patient who just happens to have been born in 1991, I look at them and wonder what my daughter would have been doing now, what she would have looked like, what her voice would have sounded like. Would she have married? Had children?
I don’t think there’s a “cut-off” day when all of a sudden it doesn’t hurt anymore, or Moms should be expected to just “get over it,” because the truth is you never forget, you never lose that “ache,” even when you eventually find peace, and hope, and comfort, and even purpose in every bit of your loss. It. Always. Aches. It just does.
So I’m going to give myself permission to cry this year when I open up my medical records and read the hour by hour account of my labor with Jacquelyn Anne, born on January 11, 1991, and then all of the cards that people who loved me sent, and then I’ll re-read my journal, and I’ll hold her little booties, and blanket, and cute little hat that was just way, way too big for her. And I’ll cry, and look forward to my email or card or phone call from cousin Beth, who always, always, always remembers January 11 with me.
And one of these days, I will make it back to Loma Linda to see her again in the museum. She is in the Shryock Embryology Museum at Loma Linda University Hospital and Medical Center in San Bernadino, California – donated because we were told that she had the worse case of anencephaly they had ever seen. So even before leaving the hospital, there was purpose in her death. Medical students learn from her. My brother is a physician, my sister a pharmacist, myself a nurse – so I am still grateful for any opportunity to donate for educational purposes. We participated in a 10 year March of Dimes study on neural tube defects which resulted in knowing more about what causes them, such things as folic acid deficiencies – more purpose in her death.
To my two friends who have lost babies, and I know as soon as you read this, you’ll know I’m talking about you – I don’t think our heartaches will ever, ever go away. And, what kind of Moms would we be, if they did? Let’s always remember our babies, even when they would be turning 32.
Happy Birthday in heaven baby girl. You are not forgotten. You never, ever will be. Love, Mum XO
“Someday, God will heal the crack in creation that gets into things and breaks babies, and someday, He will heal the crack in our hearts.” Wise author, unknown