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
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.
It was a beautiful Memorial Day Weekend a few years ago. I had gone with a good friend to the Indianapolis 500. I was very recently divorced and my son, age 8, was with his dad at an amusement park fairly close to our house. I had just returned to the area when my ex-husband called with a pretty horrifying story. His normally tough-as-nails mother had called him, hysterical, saying something about a pool, but he couldn’t make out anything else she was saying. He was on his way back to town, but in the meantime asked me to look for his mom.
So, I did. I think I knew all along what I would find. I knew my brother and sister-in-law were having a pool installed for my niece and nephew, ages 5 and 8. I stopped at a couple of places where I knew they hung out with no luck, so I headed for the hospital.
I went to the ER desk and told them who I was looking for. Just the last name, mind you. Immediately, the front desk person said I could come in the back. I didn’t know that meant really bad news. I said, “No, I can wait out here, no problem,” but she insisted. Into the back I went, and immediately I was confused. There was my mother-in-law, surprisingly calm, or so it seemed. I went to her, and she said it was my niece, it had been the pool where the football cookout had been held, my niece had been missed but there were too many toys in the pool to see her at the bottom.
And I said, “Well, how is she?”
She said, “Oh, she’s dead.”
A lot of the aftermath is a blur now. I went to my brother and sister-in-law, who were holding my niece’s body. She looked perfect and beautiful, but blue. I remember my sister-in-law looking at her almost reverently. I remember sitting on the curb outside the ER, waiting for my ex-husband to get there so I could tell him. I remember my son’s horrified face as he saw her as it sunk in that he would never argue with her again over who got the middle part of the back seat. And I remember the feeling of absolute hopelessness that I couldn’t protect him from that, or from the other ugly things in life.
That night, something broke inside me. I went to bed that night knowing things would not be better in the morning. My sister-in-law’s wails echoing in my ears.
It’s been years now. My sister and brother-in-law are doing as well as I think anyone could and I was diagnosed with PTSD. I thought I had a good handle on it, but I got a comment from someone that brought it all back. This person told me she hoped someone in my family, like my child, got sick so I could understand why she missed a ton of work.
She didn’t know how close to home she hit.
First, people are afraid of what to say, and often say nothing. This is a mistake. Many people are afraid to bring up the deceased child, fearing it will open wounds and raw feelings. But in my opinion the hardest thing is when people don’t talk about Maddie. It feels like she was never here, and this is what is heartbreaking. It is nice when people say, “I thought of Maddie today,” of “I saw a kid in a dress like the one Maddie wore at whatever today.” Or “I miss Maddie.” These things help, not hurt. Make us feel she is not forgotten. Sending a keepsake with the child’s photo or name, things that help her be tangibly remembered are nice. We have received AMAZING things and we cherish everything.
Six years ago, one of my friends lost her father. I was living across the country from her, and I was terrified. I felt guilty that I had my dad and she didn’t. So I didn’t say anything, and I ruined our friendship for a while. I am very lucky she gave me another chance. She has been there for me since Maddie passed away. I have horrible regret about the whole thing – all I had to do was call her and say, “I’m so sorry.”
Religion is a potentially explosive way to comfort. Unless you absolutely know 100% percent the person will be comforted by mentions of faith, don’t go there. Religion is a very complicated thing in the wake of a child’s death, and they may be angry at God or confused as to how to incorporate the death of a child into the religion that they have known to have their best interests in mind. Even someone you know to be intensely religious may be having a crisis of faith in the wake of a child’s death, and could be angered/saddened by mention of religion. Especially stay away from, “God wanted her more than you,” or “God needed her more,” etc.
I don’t care if it is the all powerful creator of the universe, you don’t tell any Mama that anyone wants her baby more than she does.
So many people hate seeing their loved one in such pain and want to fix it. Consequentially, they start talking about how you have to move on, that you will see them again, the child is with God, it will get better in time, etc. All things they think will “fix it.” Don’t try to do this. Follow the lead of the parents. Discuss what they want…if they go to those places you can discuss those things, but don’t try to steer it there. Sometimes I want to talk about Maddie and the unfairness of it all, and other times I want to hear funny stories or talk about reality TV.
Don’t be afraid to show emotion. Many people feel they have to be strong for their friends, that they can’t cry or show emotion. I don’t think that is true. You can be strong AND be emotional. If tears come, don’t fight them. This shows your friends that you, too, are crushed and sad and lost.
Address the horror. People often worry about addressing how awful the situation is, but the parents want to hear that people get the hell they are in. The parents feel alone when they don’t think people understand how awful this is. Saying things like, “This is the worst thing. I am so sorry and sad that it had to happen to you and your child,” helps.
Food is very helpful. The last thing you want to do when mourning is worry about eating. There are always people around after a death, and the last thing you want to think about is feeding them. Mike and I never would have eaten if food hadn’t been sent to us. A gift of food also tells the parents they are loved.
Say or express something you never have before. If you have never told the person that you love them, come right out and tell them that you love them. If you’ve never held their hand, hold their hand. Give hugs. These expressions mean a lot.
Finally, my biggest advice is to not be afraid to take initiative. We often say, “let me know what I can do,” in a situation like this. Well, I can tell you that Mike and I had no idea what we needed. We were so lucky that we had friends and family rally together and just take care of things. A few came to town to help out. One friend organized food, another cleaned my house, two bought the clothes Mike and I wore to the funeral, one put together Maddie’s slide show, a few organized the reception after her service. I could go on and on. I didn’t have to worry about anything because I knew my friends and family would handle it.
Be there for your friends. Call, email, text. Tell them they don’t have to respond. Let them know you are thinking of them, and their child, all the time. Don’t drop away after the funeral – that’s when they’ll need you the most. Be the kind of friend that you would want to have.