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.
“It snowed the day you were born.”
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.
I would trade it all just to tell you your story.
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
Today kicks off Autism Awareness month.
Today we also remember the autistic children who have eloped and died.
A 2017 study found that almost a third of reported ASD (autism spectrum disorders) missing person cases related to wandering/elopement from 2011 to 2016 in the US ended in death or required medical attention. According to this study, accidental drowning caused over 70% of lethal outcomes, followed by fatal traffic injuries. Injuries or traumas found ranged from minor scrapes and bruises to non-fatal traffic injuries, near drownings, dehydration, and physical/sexual assaults after elopement.
Pie chart courtesy of the National Autism Association
Lethal outcomes to autism elopement occurred at a rate of about once a month on average in 2011 to about two to three times a month on average in 2015 and 2016. Children at ages 5 through 9 exhibited the highest number of deaths, while children under 5 faced the highest lethal risk with cases ending in death nearly 60% of the time.
Most people who elope or wander off were found in or near water, traffic, at a stranger’s residence, or in the woods. Low-sensory locations are also a common theme such as abandoned areas and vehicles, cornfields, farms, tree nurseries, libraries and other typically quiet settings.
People in this study were under different types of supervision when the elopement occurred, with non-parent supervision accounting for 45% of cases. Times of transition, commotion, and stress increased elopement risk, and those who were noted to be upset or agitated showed a higher risk of abruptly exiting into traffic or other high-threat situations.
Today is one of the saddest days of the year for many on the autism spectrum as well as family members and loved ones of children on the spectrum. It’s the day that we remember those autistic children who have wandered away, died, or drowned over the years.
Why are we remembering these kids?
Because children on the spectrum are attracted to high-sensory places. In fact, when a young autistic child goes missing, families are told to head straight to the nearest body of water to look for them.
It doesn’t take much water to drown. A little boy was with his father walking in a park last year and had gotten a bit ahead of Dad, still close enough where dad could see him, when suddenly the child bolted.
After several hours of searching, they found the child face down in a stream in six inches of water. Six inches of water is all it took.
When I mentioned I was writing this piece, people asked me why kids autistic children are drawn to water. It’s because when we’re in water we tend to feel relaxed and comfortable. For someone on the spectrum, like me, I can say that most of us like it because there’s even pressure on our bodies.
Young children only know that they feel comfortable; kids don’t think about the fact that they can’t breathe, and we all know the end result of trying to breathe underwater:
Death by drowning.
How can we prevent these tragedies from happening? If we know we have a runner, we can focus our attention keeping them close. We can teach them to swim. We need to alert the local authorities about our children who wander so they can prepare in the event of an elopement. We can get a service dog.
Most people think service start at $10,000 and skyrocket from there but that’s not true. My service dog, Tye, came from Dogs Nation in southwest Missouri and is a rescue dog, just as all dogs are at Dogs Nation.
They work on a donation basis (and not from the families that take the dogs). They rely on donations of food, flea and tick prevention, dog houses and financial donations.
A service dog can help block the child from entering the water and if a worst case scenario happens and the child hits the water they can alert parents or family members.
Shawn Abell of Dogs Nation told me a story of something that happened nearly a decade ago near her home: A child went into the water and a nearby dog, a non-service dog who was a retriever, did what he was trained to do and went into the water to retrieve the child and saved his life.
Today is an important day for parents, family members, and loved ones of children on the spectrum and a day to educate those that aren’t aware of just how serious a problem elopement is. Amongst deaths of young autistic children, 91% die by drowning and that is way too many. Even one is too many.
If you’re reading this, please share it with families of autistic children and their caregivers so that no child has to go through this again and so that next year we’re not remembering deaths from 2019.
In June of 2017 my daughter was diagnosed with leukemia. She passed away in November. My husband and I have custody of our 11 year old granddaughter. Grieving is taking it’s toll. Last month I was admitted to the hospital for being suicidal.
I think about my daughter all the time. I spent every minute in the hospital with her for 5 months. Telling my granddaughter that her mom was dead was the worst thing I’ve ever had to do. Whenever I go outside for a smoke, I think of my daughter. Whenever I drive the car, it reminds me of the drive to the hospital.
My mind won’t stop thinking suicidal thoughts. My brain constantly hammering me with negative thoughts. I’m hopeless, sad and feel out of my body. I don’t recognize my thoughts or myself. I am so lost. The emptiness is everywhere and I don’t know what to do.
I’ve been treated for depression for years and have had suicidal thoughts the entire time. I spent 2 days in the psych ward. I slept most of the time. I attend an outpatient program and went to a new psychiatrist today. He said my bipolar diagnosis was incorrect and adjusted my medications.