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.
I saw your pajamas last night.
No, they weren’t the exact ones, of course. I returned yours to the store, along with your bassinet and baby blankets.
These were the same though, your pattern. The ones I picked out to match your nursery. Bright teal, with lime green, hot pink, and bright purple flowers. And panda bears. Lots of pandas.
Is it wrong of me then, that I do crave to hold another baby in my arms?
I’ve given myself time, and I continue to mourn you. But I still have so much love to give. And Ian wants a baby. I want to give him this gift, to share this part of our future together. A part of me still feels I’m forsaking you to do so.
So tell me, my sweet Bella, what am I to do?
How long am I to go on missing the sound of your heartbeat, the feel of your somersaults?
How long before it’s “acceptable” for me to want another child?
Liberty Ann born March 30, 2011 and died on April 19, 2011.
Ally’s Son: Collin
Collin: born on August 9th, 2008. He passed away 30 minutes later from cardiac arrest after an emergency c-section due to a placental abruption.
Nicholas, born December 14, 2005, died April 19, 2006 from SIDS.
Max Corrigan, born November 14, 1987 and relinquished to adoption on November 18, 1987.
Brianna Ann 3/19/2018, car accident – donated the gift of life to 5 people through organ donation
Bryce Philip born May 26, 2009 and died September 1, 2009 due to SIDS
Ashton Karol, stillborn on February 24, 2010 at 17 weeks.
Addison Leah, June 13, 2008, accidental death.
Jessica and Mark’s Daughter:
Hadley Jane, born October 9, 2001 and died October 11, 2007.
Halsey Douglas Dukes December 31, 2016, Halsey passed from hemophaygocytic lymphohistiocytosis (HLH)
Halcyon Grayson Dukes was born September 1, 2011 Halcyon failed to develop after 9 weeks
Jake, born August 14, 2005 died August 27, 2005 due to prematurity and hydrops.
Sawyer, born November 17, 2009 died December 26, 2009. His cause of death has not been determined because he is part of a study at the Mayo clinic for heart arrhythmias – SIUDS (unexplained sudden infant death)
Cullen, September 11, 2010, stillbirth.
Brian Vitale, accidental death, September 4, 2007 – June 3, 2010. We miss him more and more each day.
Patrick, born April 10, 1977, Adoption
Sophia Lu Boudreau, born December 21, 2006 and died October 9, 2007 from SIDS.
Rebecca and TJ’s son:
Rafe Theobald Calvert, born on October 11th, 2009 at 26 weeks. Spent 3 months in the NICU and underwent an intestinal obstruction repair. He was released on January 11th, 2010 and we brought him home for 6 weeks. He passed away at 4 and a half months old from SIDS on February 25th, 2010.
The Stamm’s Daughter:
Adrienne Mae, May 7, 2006, Sudden Infant Death Syndrome.
Nathan Michael King, died from SIDS November 2008.
Kendra, April 23, 2005 to March 24, 2006. Died from Jacobsen Syndrome.
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.
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.
So starts the story I tell my firstborn every April 13th. She is twenty-two years old, and her eyes still light up when she hears it. I have a similar story that I share with her younger brothers. I love my kids’ birthdays – I always celebrate them with joy and near abandon.
But my youngest child, my little Nicholas, has never heard his story.
SIDS took Nicholas from me when he was four months and five days old. SIDS is what the doctors say when what they mean is, “We don’t have a fucking clue what happened to your beautiful, healthy baby. All we know is that he’s dead. We went to medical school for four years, and all we can tell you is the same thing you knew the instant you saw him in the ER. Your baby is dead. It’s from SIDS.”
Thanks to SIDS, my Nicholas never got to hear his birth story. I never got to see his eyes light up while basking in the attention of his adoring mom. I never got to hear him vying for his own story on his brothers’ or sister’s birthdays. I never got to hear him ask for anything. He was taken before he learned to talk.
But I need to tell his story. I need to remember the good things and not just the tragedy that overwhelmed my life. I want to reclaim the joy of his birth. I learned to grieve after I lost my son.
Now I want to embrace the wonder and excitement that preceded the horror.
This is for Nicholas.
I was patiently waiting for you to be ready to be born, but my midwife was anxious. Mommy has lupus, and even though it’s just the annoying skin kind of lupus, everyone was worried about you. So even though both your sister AND your brothers were born late, the midwife and doctor insisted that I have you by your due date.
Which meant I had to be induced.
The day before you were born, Mommy and Daddy went to the hospital to get started. I know how long my labors last, and once I got into the hospital, no one would give me anything to eat until after you were born. So Grandma Carolyn and Grandpa Ed met me, Daddy, Anna, Eric and Carter at the Golden Corral for dinner. After dinner, the other kids went home with Grandma and Grandpa while Daddy and I went to the hospital.
We waited an hour or so for a room, and then another three hours for the doctor to get me started on the induction. It was a long, trying night. In the morning, I was not any closer to having you. I knew you would come when you were ready, but the folks at the hospital were stubborn. The doctor gave me an epidural, broke my water and gave me some more medicine to hurry things along. Margaret, my doula, was there. Grandma Carolyn brought Anna to the hospital so that she could be there when you were born.
After a very long day of waiting, I was so happy when it was finally time to have you. You were born at ten o’clock the night of December 14. You were such a beautiful baby: pink and healthy and perfect. The nurse cleaned you up and handed you to me for the very first time. You snuggled into my arms and nursed just a little.
Then Daddy held you. Anna and Grandma Carolyn came in and held you. Everyone cooed and smiled at you, touching your little hands as you stretched and reached into the world for the very first time. The next morning, Eric and Carter came to see you. They were so excited to meet you! And when we brought you home the next day, you were just the most loved little boy that ever was.
I wish more than anything that I could tell you your story. That I had more than just a few months of happy memories of you. SiDS is a cruel mistress. That your father and I had been able to keep our marriage from falling apart. That your brothers and sister were still innocent of death and loss and grief and despair. That you were sitting here next to me right now, bugging me to use my computer to play Minecraft, or whatever it is that would have caught your interest. That you were asking for a ride to a friend’s house, because it’s almost the end of summer vacation. That I was buying you yet another pair of tennis shoes after you had outgrown the pair I just bought. But none of that gets to happen.
What did happen?
I started over after my divorce at age thirty-nine. I set up my own household, the way I saw fit. I raised your brothers and sister with love, compassion, and intention. I remarried, a man who harbored a cruelty of which I was unaware until cancer came calling. I cared for him until his death.
I live my life fully, without fear. I look at myself with honesty. I reach out with empathy to other moms who have lost a child. I know sadness and depression. I know healing and redemption. I benefit from therapy. I see genuine love and kindness from friends and the family I have made. And I am back from the brink: better, stronger, healthier, and more complete than I was before.
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.
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.
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 epregnant 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’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?”