On December 9, International Child Loss Day, we will share with you a list of people who have lost their children, siblings, cousins, best friends, similar to the way we did for Pregnancy and Infant Loss Day.
Those tables, forever missing one, are each welcome to share their loved one with us so that we may never forget.
I’m asking you today to pass this post around to anyone who may need it, you can use it if you need it, and you don’t have to have been the parent to feel the loss.
The way I generally organize these precious names is pretty easy:
Name, Parent’s Name, Date of Birth, Date of Death, Cause of Death, a Picture or 3, and if you feel like it, a bit more about your child. Who they were, what they loved, what they hated. Anything you’d like.
You can either send the information to me, firstname.lastname@example.org or you can use the online submit form. Or, you can lurk. All are acceptable and all are welcome.
We are none of us alone; we are all connected.
what can you say when a baby dies?
ive been wanting to post for a long time about what to say when someone loses a child. some days i feel like i really didn’t lose a child so much as i lost the possibility of one, or two, as it were. when my mother remarked that i didn’t really have them, i knew what she meant, and i agreed, after i recovered from the initial sting of her candor.
i didn’t after all. my dear ayla, the one whose bag of life was so grievously compromised, never showed us any signs of spirit after she was born. she was on the shuttle already as we nuzzled her warm body.
sweet juliet was pink, opened up her little mouth, stretched her limbs. morphine i cried out, “T! cut her cord!” so desperate was i to believe the deceit of her movements. silly people, my daughter is fine!
run along now. ah but reality resurfaced all too soon. the amazing wonderful caring loving angel at my bedside nurse worked swiftly to baptize her and deliver her to our arms.
this is where is gets hazy for me.
i know T held his sweet girl as she went on to join her sister. he says she made a face that looked just like her mama right before she drifted off.
i slept in and out of consciousness for hours, waking only to deliver the placentas and fill the space-age barf bags i was provided. when i finally half-shook my stupor, my mom helped me shower and put on a stretchy netted undie.
the doctor came in and told me i could leave whenever i wanted or i was welcome to stay. i gave him a ‘watchu talkin bout willis?’ kind of look. i was in no shape to leave and after awhile i was moved out of the birthing suite into a regular room.
T showed me the text he had sent out to our friends and families:
‘this morning at exactly 20 weeks we delivered Ayla Joy and Juliet Grace. we held them in our arms, baptized them, and kissed them goodbye.’
i never would have thought to send a text and i forwarded it, in disbelief, to many. one went out as an answer to a ex co-worker who had not 5 minutes earlier asked how everything was going: not good. its not good.
the condolences started rolling in. well, mostly condolences. T got a few ‘congratulations!’ back, from people who had just scanned the text. that’ll teach em to cut corners. this is where it gets tricky.
i in no way want to sound ungrateful for people’s sympathy. any words of consolation or comfort were of course appreciated, and the commonplace ‘im sorry’ and ‘you’re in my prayers’ were lovely to hear. though
T wondered aloud exactly when all of his friends had started praying.
its just that the words that meant the most to us were unique. one friend wrote ‘you gave them such beautiful names’, another, ‘your little girls are angels now, they will always be with you and i will never forget them.’ after he and his wife could gather themselves enough to be able to call me; my cousin, a dad of two boys, cried with me. he said ‘i wish i could have met them’.
so what can you say when a baby dies?
certainly nothing that anyone said took the pain away, but having the girls acknowledged was something that meant a lot to both T and me.
when an older person dies, you don’t just say you’re sorry, you usually elaborate about the person and what you loved about them. that’s what we especially appreciated about these few comments. people were not just pitying us, feeling sorry for what we went through, they were remembering our girls to us and acknowledging that even though we didn’t really get to have them, lord, they were here.
When a baby dies, we are fragmented. Shattered, we must pick up the pieces and put them back together as we pay tribute to our children, our tables forever missing one, our families incomplete, our treasures in heaven, our babies alive only in our hearts.
It is through our stories that they live forever. These children were here and they mattered. They were loved.
They are loved.
My therapist told me that I hide behind walls of humor.
And I do.
I laugh so I don’t cry. And I have been doing a LOT of laughing lately.
But I have been doing as much crying, just behind closed doors. I have been going through all the stages of grief and grieving in like a minute every single day. It’s wearing me down.
I miss the baby I lost so much that I ache.
I thought Christmas – her due date – and what would have been her first birthday would have been harder.
I’m okay in public and with those who she’s disappeared to. I can pretend everything is okay; that I am fine.
I’m not fine.
But today. This date which means nothing to me is harder than her day. Tuesdays and the 28th of every month are torture because she was taken Tuesday, July 28th. But today?
Why am I aching for her today, a day that means nothing? Why do I miss her so much that I can barely breathe?
She would be a year old.
What would she look like?
Would she look anything like her sisters?
Would she look like her daddy or me?
Would she be walking?
Would she be talking?
Would she cuddle me when I needed her?
It’s such a punch in the gut, living without her. Having these thoughts. And seeing her and her “birth” (which wasn’t a birth to anyone but those who really loved her) every time I close my eyes.
My therapist wants to talk about it; deal with it.
If I talk about her and heal, will what few memories I have fade?
I don’t know that I can relive that night out loud. I see it over and over in my head. I wrote about it here. But I can’t say out loud. I can talk to my husband and mother because they were there, they know. But even my husband doesn’t grieve with me. He has almost moved on. I don’t think I ever will. I held her in my hands. And always in my heart.
Everyone grieves differently and he just wants me to be better.
How do I get better?
Why on a day when I should be semi-okay does the grief come out of nowhere and take me to my knees? The pain. The anguish. I feel like I am drowning.
All I want is to hold my little girl in my arms. To rock her and smell her sweet smell. I never got to smell her sweet smell. It’s not fair.
I want to punch walls and throw things and scream at the top of my voice, “it’s not fucking fair!”
This aching, this longing for something that can never be. That is the hardest. I miss my daughter. I can’t breathe without her today.
Maybe tomorrow will be better but today it’s not going to be okay.
Today, I want to fall apart.
Today, I feel like I am dying.
You are invited to add your child’s name to our wall of remembrance.
This year on The Band Back Together Project, we are curating and adding the names of your children who are no longer with us and we will be posting our Wall of Remembrance on Pregnancy and Infant Loss Awareness Day.
We welcome you – any of you – to share the names of those you are missing.
I never expected to be a mother at 17. I also never expected to be joining the baby loss club at 17 either. Walking out of that hospital in Tucson on that late August day, I knew that my life had fundamentally changed.
Instead of a baby in my arms, I carried a potted plant and a heavy heart out of the doors of University Hospital.
Sarah Beth Sluszka was born on August 22, 1991.
She died August 24, 1991.
I don’t know what caused her death. I refused an autopsy; I didn’t want my baby being cut up like a science project.
Knowing what I know now, I believe her death was related to a lack of oxygen due to a cord accident.
Sarah never cried, opened her eyes, or moved on her own.
Making the decision to take your child off of life support is heartbreaking.
Making that decision at 17 changes the trajectory of your life. I had no life experience to draw from. My parents only advised, but did not make this decision for me. I alone chose and therefore changed my life forever.
While I miss wanting to know who Sarah could have been over these past 28 years, I am happy with the person and parent I am today.
I went on to have four sons, a (step) daughter, and one granddaughter (so far!) and they have truly been the lights in my life.
In them, I see who Sarah could have been, what she would have been like. Like her siblings, she would have been an amazing human.
August 22 is Be an Angel Day.
Every year, I ask my friends to do one random act of kindness in Sarah’s name on that day.
It helps me to know that people are thinking about her and doing good in her name in the world. I’ll ask you all to do that next year through.
The Band, just put your children’s names onto our wall.
Together we can spread kindness and remember our children with happy hearts.
Being a bereaved parent is lonely. We’ve been through what most people believe is one of the worst things anyone can experience. We are permanently, irrevocably changed. We’re trying to figure out who we are now that we aren’t the us of Before.
We are parents and always will be.
But when someone asks in casual conversation “How many children do you have?” what was once an easy question is now loaded with considerations.
I find myself doing quick calculations in that moment:
What is the likelihood I will ever see this person again?
Do I have any inkling of how they would respond to the full truth?
Is this just polite small talk?
If I don’t think I’ll see them again, if they seem uninterested, if this is standing-in-line just-passing-the-time talk, or if anything seems unsure, I usually keep things very simple.
“Three” I say. “Two boys and a girl.”
If this could the beginning of a longer or deeper relationship, the person seems genuinely interested and willing to stick around to talk awhile, or something just seems sympathetic about them, I’ll tell them the truth.
“Four” I’ll say. “Two boys and two girls, but our oldest girl passed away last year.”
But my calculations can be wrong.
And there’s no conversation killer quite like death.
Losing a child of any age is one of the worst, hardest things for a parent to bear.
Throughout the past two years I have often heard, “God doesn’t give you more than you can handle.”
Well, I have a bone to pick with God: I am NOT as strong as He thinks I am.
Somehow, I managed to get through my husband’s year long tour in Iraq. I had to. Late in the evening in September 2007, I hugged and kissed my husband, as he rubbed and kissed my h u g e pregnant belly and got on a bus. I didn’t know if I would ever see him again. I can still see his big, goofy grin as he smiled and waved good-bye. I stood there, watched the buses pull out into the darkness and I prayed to God that he would come home safely. I prayed that our son would get to meet his Daddy; the same prayer I prayed every day for the next year. I got into the truck, hugely pregnant, and I lost it.
I cried the whole way home.
27 days later, my son Robert was born.
I’m not so strong.
Now, seven months after Robert’s death from SIDS I can’t seem to “get it together.”
I’m pretty smart. I know that I am grieving. I know that everyone grieves differently. But I’ve had enough. I don’t want the panic attacks that happen for no reason. Panic attacks that I shouldn’t even be getting anymore because I take medication to prevent them.
Tired of being tired because I can’t sleep at night. Every time I close my eyes I see Robert in his crib when I found him, dead from SIDS, or in the hospital on the gurney.
I’m starting to get mad, really mad. Mad at my husband because I had to go through another major event alone. Mad at the Army for not letting Joe be at home for Robert’s birth. I’m mad at God.
This is how my conversations with God have been lately:
Me: “Why did Robert have to die of SIDS?”
God: no response
Me: “Guess I should have been more specific when I asked you to bring Joe home safe so Robert could meet him.”
God: no response
Me: “I’m a good Mommy, why do I not to get to have my baby?”
God: no response
Me: “I think you and I need a break!”
God: no response