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.
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.
Like a whole bunch of people in the Chicago area in late July of 2017, when Mike Malinowski completed suicide, I was crushed.
On the outside, if his social media activity was our only peek inside his life, the guy looked like he was living the dream: expensive cocktails and smiling ladies and fun looking vacations and hip hop shows and live music and a stable full of friends.
However it looked on the inside, I don’t and won’t know, but it was obviously a shitshow that none of us were invited in to witness.
I was 37 at the time of Mike’s death by suicide, and what’s weird about the whole thing, is that it’s almost like I don’t remember who I was before he died.
That morning, I remember, was eerily gorgeous. It was a Saturday or a Sunday, I had nowhere to be, but I woke up early anyway. It must have been close to 5am, which sucks because I NEVER get to sleep in and here I was waking up when I didn’t have to. I did what most people do, I grabbed my phone and headed to the bathroom to start my morning.
Within the first five seconds of opening social media while on the toilet I knew something was off. I had like four facebook messages, and no one ever wants to wake up to that shit in the first place, but these were from people I hadn’t talked to in a decade or more. Like everyone else would, I ignored the fb messenger notifications and started scrolling.
There it was. Mike’s final post. He had typed, just a half hour earlier, maybe 40 miles from the toilet I now sat upon, that he wasn’t a pussy and that he couldn’t take it anymore and that he loved his friends. But he was out.
That was it.
Of course at this time of the morning there were only maybe a dozen reactions, and I did what I bet everyone else did, I went into fb messenger and typed out “what did you do?” and sent it to him.
No response. Ever. Still.
I checked those messages I had tried to ignore. Every single fucking one said “what just happened?” or “is this fucking real?”.
My friend, hell one of my favorite pint sized musicians, had completed suicide and left his note as a post that I would morbidly stalk every few months just to remind myself that it actually happened.
Mike’s fucking gone, he peace’d out just after he said goodbye to everyone, on FACEBOOK no less, and here I was thinking I needed to be more like Mike, more in tune with what’s right in my life, more aware of how awesome the shit and the people around me are.
At 37, with the most beautiful woman in the world as my wife, and with three incredible, healthy, energetic children all still asleep in my house, I was fucking devastated.
Like, punched in the stomach, dragged through the streets, every ounce of everything inside of me depleted, just, devastated.
I remember returning to bed and sort of sniffling a bit and my wife turns to me and says “what’s going on?” as she’s still half asleep.
“Remember Mic One?” I say through ragged breaths.
“The littlest rapper?” she jokes, because it’s true. We fucked with Mike so hard, everyone did, because we loved the hell out of him.
My wife knew Mike, the rapper, because he was the sole reason why we postponed our first wedding anniversary trip waaaaaay back in 2005, all because he offered my band The Cankles an opening slot at one of his shows. His shows were epic sold out parties, every time, and his support to any artist on the come up in Chicago was huge, if even only on the inside. Mic One shows were where any musician in the indie hip hop scene wanted to be. My wife knew Mike as the guy who said shit no one else would even dream of saying on the social medias, he was the guy your wife rolled her eyes at. Always.
“Yea.” I responded. “He’s dead. Suicide. He posted about it on facebook about a half hour ago.”
Julie went up on one elbow, seeing my face as it dove for her chest, she didn’t say anything.
I spent the better part of a half hour just sobbing. Not just because he was gone, but because I felt like his taking his own life was sort of a kick to my own stability. If Mike couldn’t handle this shitstorm, how the fuck was I going to?
The rest of that day and the week to follow all went by in a sort of blur. I was communicating with friends I hadn’t seen or spoken to outside of social media in over a decade. Everyone was fucking hurting.
How did we not see this? Why didn’t someone say something? Why didn’t he ask for help? Now what?
I was a pile of absolute shit.
I should tell you, because it matters in this here story, that I’m an “elected official”, an alderman, in a small city in the Chicago suburbs called Yorkville. There’s 19,000 people, it’s rural-ish, but with way more suburban folk who wanted less people and bigger yards, it has all the comforts of a larger suburb closer to the city, without a lot of the noise.
Anyhow, my mayor at the time, Gary Golinski, got word of what had happened and, because he’s fucking awesome, he called me to check on me. I told him I was a pile of shit and I didn’t know how I was going to bounce back from this sort of blow. He listened to every mumbled word I said one night and asked me, “Well, what are you going to do about it?” to which I responded, “I don’t think there’s much I can do, he’s dead.”.
And then he said something I’ll never forget. “Well, you gotta do something. I’ll wait.” and then there he sat, on the other end of the line, just sitting patiently. He wasn’t offering me much, but he was present.
Over the next half hour, as I sort of talked to myself with Mayor Golinski listening, I sort of went over my options.
I could do nothing, which is what I had been doing for the last week, basically ignoring everything in my life.
I could say something at a meeting some day soon, but those are just words. I needed something a bit more public and uncomfortable.
Together we decided that I needed to make this a turning point in my life, and make a public and official testament that suicide is an issue, that there are resources available to those who need help, and that just saying hi or simply being present for someone can help turn their day around. Oddly enough, that last part was a direct result of Mayor Golinski just being there on the phone with me as I worked through my shit.
That night I drafted what would become the National Suicide Prevention Awareness Month Proclamation. And with the direct support of my city, the United City of Yorkville, we were going to proclaim, with Mayor Golinski as my bullhorn, since I still couldn’t talk without crying, that September was Suicide Prevention Month, that suicide was an issue, that mental health resources were available, and that a little slice of humanity can go a long way when someone is having a tough time.
We adopted that proclamation in late August 2017. The night of that meeting I went home and emailed every elected official I knew and asked them to do the same. I was hurting, but I was fucking fired up. I’m sick of people not knowing they matter, sure, but I’m also sick of that fact that whenever I say the word “suicide” people look at me like I just screamed the word “MASTURBATION” in a catholic school.
Denial about a subject doesn’t make the subject any less real, talking about it seems like the best way to make something taboo less terrifying.
Sure, I was terrified of having to talk about suicide, but I knew that if I didn’t, someone else I love might consider it their only option and then actually follow through and I’d lose someone else.
I was fucking done sitting still.
I haven’t sat still since.
In 2018, I got permission to conduct official outreach on behalf of the United City of Yorkville a bit earlier, and I ended up sending out about 3,000 emails on my own and got 234 cities, and 20 counties, in 40 different states to official talk about suicide by adopting the NSPAMP.
That same year, I reached out to a group in Chicago called Hope For the Day, a proactive mental health and suicide prevention non-profit, and immediately fell into step with their approach and knew I had found a home for the fire lit under my ass.
While working parallel in my own little suburban bubble, HFTD saw something in my communication style, and rather than them just high fiving me for continuing to talk about suicide from my position as an alderman and a dad, they nudged me to consider being more physically involved in the proclamation project than just a guy sending emails.
In 2019, along with Hope For the Day, I’ve still sent out 1,000 or so emails, but my numbers are only in the 70s as of this writing, but I don’t care, because we’ve already visited and presented in front of a handful of city councils in the state of Illinois. We’ve directly interacted with those impacted by suicide, and we’ve demonstrated to those who have NOT been impacted by suicide, how devastating the loss of one human from suicide can be.
In 2017 and 2018, I was still unable to attend many of the readings and adoptions of the proclamation, because it was still hard to talk about.
In 2019, it’s not any easier to talk about, but fuck everything else, I’m not done trying to make sure that Mike Malinowski didn’t die in vain and that I can’t do what I can do impress upon humanity how important we all are.
We’re in this shit together whether we like it or not, so I’ll be around if you wanna fucking talk about some shit. I also like tacos.
Oh, and I just got hired by Hope For the Day on August 15th, 2019, as their new Public Policy Director to directly communicate with people on all sides of government, to not only ensure the money we spend as a country on mental health and suicide prevention is well spent, but to make sure we all realize it’s human to hurt and our job is to talk about what sucks so that it doesn’t end up hurting someone or losing one more person to suicide.
So, yea, I cuss when I talk about pain and suicide and hurting and shit, but it’s ok not to be ok, and I’ll grow up someday (I’M LYING).
TALK ABOUT SUICIDE.
BUT TALK ABOUT THE SHIT THAT SUCKS.
Sunday will mark five years since my sister died. I had a hard time losing my sister to bone cancer. She fought for over three years with bone cancer that caused her daily pain and stress.
Her life ended when she’d had too many surgeries and her body couldn’t keep up. Losing my sister is the hardest thing I’ve experienced.
I don’t feel bad for her now, because she’s free from all of that. But I do miss her; more than I miss my grandparents who have passed away. Her death was a trauma for me, as her 27-year-old soul was ripped away from my family and we were left with a forever empty chair at the table.
Now, I have a daily regimen of seven medications that keep me here on this earth from antidepressants to mood stabilizers and sleep aids. I fight suicidal thoughts and feelings near-constantly during this time of the year.
I have two girls; the younger one is my lifeline. I was pregnant with her when my sister died and I live in fear that she will die and leave me just like my younger sister left my mom.
My faulty logic says that little sisters die; I am so afraid that I will lose her. Her presence is one of the biggest comforts to me, which makes me love her more than her sister.
There, I said it: I love one kid more than the other.
What can I say? What else is there to do but keep pushing on, trying to move past a pain that is so old and yet so fresh.
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.