‘My son was 4 days from 8 months old. Never one health concern. Then, just like that, he was gone.’: Mom finally celebrates her late son’s birthday after losing him to SIDS

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“I would like to begin my story by telling you about the most powerful and amazing experiences of my life – the births of my three beautiful children. Becoming a mother was the best blessing of my life. If you would have asked me 5  years ago what I’d be doing with my life, I would have said, ‘I’m going to be off traveling and exploring the world.’ God had a different plan. An extraordinary, yet challenging, plan that I’ll never regret a single moment of. I became the best part of myself, a mommy, on October 10, 2015. I welcomed two beautiful twin girls into this world, Violet Ann and Lilah Nicole.

Newborn twins swaddled in blankets with light pink bows in their hair
Kyrstyn Johnson

Though I was overwhelmed with absolute joy, the first few months were tough. They were born at just 4 pounds each, and spent the first 3 and a half weeks in the NICU. After they came home we were so nervous. They were so tiny and had lots of risk factors for SIDS; I don’t think I slept a lot back then. Now I have two beautiful almost 3-year-olds girls who are amazing, sassy, and smart.

On December 15, 2016, I found out I was going to bring another child into my life and I just knew from that moment I was going to have a precious little boy. On August 22, 2017, after 15 ½ hours of hard labor, that little boy came into this world at 5:10 p.m. I felt complete; I had my two beautiful girls and my baby boy, my little man, Mayson Michael. From the moment he came into this world, Mayson was a bright light with the biggest smile on his face all the time. He loved life and learning how to do new things. He loved to follow his sisters around the house and see what they were up to. He always wanted to be a part of what was going on in the world around him because he loved it so much. I saw a bright future for him. I saw it all; tee-ball practice, birthday parties, learning how to ride a bike, going to prom, falling in love. I saw it all in this bright, amazing, happy, and healthy little boy.

Mother who just gave birth rests head on newborn's head who is sleeping on her chest
Kyrstyn Johnson
Close up of newborn boy asleep swaddled in blanket with hat on
Kyrstyn Johnson

My son was 4 days away from 8 months old, never one health concern, advanced in his milestones, saying mama, happy and brighter than the sun itself. I was in total bliss with the direction my life was going. Then, just like that, it was gone. One phone call broke me in a way I never thought was possible – my son wasn’t breathing. The first responders and doctors did everything they possibly could, but my sweet little man was gone. I remember running into the ER, asking about my son in between sobs, and being sent into a room where the doctor came in, looked me in the eyes and said, ‘I’m sorry.’ Just like that, every part of my soul and the person I was completely shattered; and I felt every part break piece by piece.

Mother sits in chair sobbing as she holds 8 month old deceased son
Courtesy of Kyrstyn Johnson

The doctor took me to the room and my son laid there, still and peaceful as if he was almost asleep. I held him and cuddled up into the bed next him, just to lay with him one last time. I remember thinking to myself, you never appreciate feeling someone you love laying warm next to you until they’re not warm anymore. He was so cold. I remember just wrapping him up in blankets and holding him tight to keep him warm, even though he was already with God. I remember telling the coroner she would need to take my son from my arms, as I could not hand him to her. My mother says she will never forget the sounds and pain that left my body when they took him. I will never forget that feeling.

Mother kisses head of 8 month old son who lies deceased in hospital bed
Courtesy of Kyrstyn Johnson

I remember all my neighbors watching as I collapsed on my front lawn sobbing and begging everyone to get into the car so we could rush the hospital. I begged God to take me instead, to wake me up from this nightmare, for it to all be in my head, but my little man was gone. How did my happy, healthy perfect boy fall asleep for a nap and not wake up? Just like that, he was gone and we never had a chance at bringing him back.

Smiling 8 month old boy before passing away from SIDS
Kyrstyn Johnson

This is the reality of Sudden Infant Death Syndrome. It doesn’t discriminate and even at almost 8 months old, SIDS took my child, yet we still don’t know why or understand how he could just die. On April 16, 2018, I became an individual that I never thought I’d be, a bereaved parent. That day I became a part of a club that no one would ever want to be a part of. I was forced to become the mother of a child who was taken by SIDS. The hospital was amazing and provided free goodbye pictures. Most of you cannot comprehend the unimaginable pain we deal with every second of every day. As parents, we think of our children as almost immortal because they are supposed to outlive us. As parents we cannot possibly fathom how to live without our beautiful creations, but unfortunately that’s not the reality of parents like me.

These past 5 months I have lived in shock and despair; I am being 100 percent honest here. My mental health took the heaviest hit, and at one point I was hospitalized because I couldn’t handle it anymore, felt unsafe, and wanted to be healthy for my little girls. I have to take medications just to get out of bed some days and had to take a leave of absence at my job. These last 5 months have been a complete blur, but I remember his birth, his death, putting him in his first suit for his funeral, and his funeral all so vividly. I have to come to terms with the fact that in just a few months, my son will have been gone longer than he was here with me. It’s unfair to me to grow this child, picture his future and have that right to raise him, just to have him taken from me.

Deceased 8 month laying in coffin holding onto blanket and sunflower
Courtesy of Kyrstyn Johnson
Mother kneels on ground resting her head on 8 month old son's coffin while crying
Courtesy of Kyrstyn Johnson

The stages of grief don’t come in a specific pattern, it’s waves and all over the place. Some days I’m angry, some days depressed. Sometimes I’m able to step away from my shock and accept I need to learn to live again instead of being frozen in grief while time moves forward. I won’t try to say I’m handling this well, but I was given no choice. And that’s what was holding me back from truly grieving because I felt no matter what, nothing was in my control anymore. I sat there and sobbed over how he’d never have a first birthday and get his first cake. One day I had an idea. I decided Mayson would still get his birthday anyway. After reaching out and being turned down by several photographers, I messaged Megan Nutter from Lil’Lemon Photography, asking if she’d be willing to do a first birthday for an angel baby photo shoot. She was more than happy to do it.

Picture frame of deceased 8 month old boy beside cupcake and banner that says, "One"
Megan Nutter/Lil’ Lemon Photography
Mother who lost her child to SIDS holds cupcake in her hands for deceased son's birthday
Megan Nutter/Lil’ Lemon Photography
Picture frame of deceased 8 year old with his older sisters hugging behind it
Megan Nutter/Lil’ Lemon Photography

After seeing these photos I realized that maybe, just maybe, I can take my experience, educate, and end the stigma of infant and pregnancy loss. To show other bereaved parents they are not alone. Everyone says they are sorry and they are there for you, but time moves so quickly and those people move on. Yet you feel stuck and alone, so very alone.

Mother holds strand of pictures from each month she had with her son who passed from SIDS
Megan Nutter/Lil’ Lemon Photography
Mother holds out picture frame of son who passed from SIDS with feather halo resting on corner of frame
Megan Nutter/Lil’ Lemon Photography

I started to gain control again with a situation I had no control over. We will always celebrate his birthday and his life. His name and smile will never be forgotten, and that’s in MY control. Everyone knows someone it’s happened to and they actually need you to be there instead of a message on Facebook. Come to the celebrations of life, call and check on them, show them they are loved and have reason to live, and be happy again. You may see us as strong doing what you ‘could never do,’ but we didn’t have a choice. Remind us we are strong, but remember we are also fragile and need a shoulder, an ear, or some words of encouragement. We will never forget our pain and all we ask is that you don’t forget us.

Maybe one day we can find an answer to why we lost our brightest sunflower that could ever exist in our lives, but we can’t do that unless we talk about it and raise awareness. I know it’s hard and uncomfortable, but hard and uncomfortable talks can lead to amazing changes. I will not let my son, Mayson, be forgotten, and I will use his name to make a difference in some way. Be kind, you never know what the random stranger next to you is being faced with in life currently, and have compassion. Hug your children tighter and teach them to be kind as well. In the end, we are all fighting our own battles, but we should never suffer alone.”

Toddler holding picture frame of her 8 month old brother who passed away
Megan Nutter/Lil’ Lemon Photography
Mother holds picture frame of her holding 8 month old deceased sons feet
Megan Nutter/Lil’ Lemon Photography

This story was submitted to Love What Matters by Kyrstyn Johnson, 21, of Boise, Idaho. Do you have a similar grief journey? We’d like to hear your story, for other parents to know they are not alone. Submit your story here, and be sure to subscribe to our best love stories here.

Read more powerful stories of parents working through child loss:

‘I ran to the laundry room. Something told me to put my hands in the washing machine. I resisted. No way. Are you kidding me? Of course he is not in the washing machine.’

‘I went into my son’s room to wake him. I could sense something wasn’t right. I remember the pallor of his face as I turned him over. Grey. Porcelain.’

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