PCHA is honored to have Tori Smith, a volunteer on the Program Committee, speak about her son Sterling. She recently led a bereavement breakout session at the Congenital Heart Legislative Conference in Washington, DC in February 2016.
When Sterling died I hurt. Physically. Every inch of my body was feeling the pain of losing my son. In the days and weeks after his sudden death I was barely functioning. Crying and forgetting to eat. I would replay the moments leading up to his sudden death over and over again looking for the moment when I should’ve known something was wrong with my baby. Looking for the moment when I was supposed to save him. I was exhausted and yet unable to sleep. I was sure this was somehow my fault and afraid I would lose my other sons at any moment.
I began looking for help almost immediately. I had never before felt this kind of intense pain or felt this alone and scared. I found some online help from those who had experienced the death of their child as well. While it helped having other moms to talk to who understood, I was still looking for someone to come along with a list or some magic words, maybe a pat on my head, something to take the pain away. I would’ve paid any amount of money and traveled almost anywhere, done almost anything to take the pain away.
After going to hear grief experts speak, many counseling sessions and even paying a lot of money to talk to psychic mediums, reading every book I could, looking into many religions for answers, I finally realized something. I was going to have to feel it all. There weren’t any words I was going to hear that would make me feel better. Being honest with myself, the only thing that would make me feel better was waking up from this nightmare holding Sterling in my arms again. And I knew that was never going to happen, not in this life anyway. I realized in that moment that I would need to be my own parent, so to speak. I would need to take care of me. I would need to listen to my heart and let it guide me. I realized that as long as I am living, in many ways, so is Sterling.
I began working out at a gym. Every single day I would pack my boys up in the van and drive to our gym. In the beginning I would walk the treadmill, ear buds firmly placed so I wouldn’t have to socialize with anyone new. Staring straight ahead, hoping no one would see the tears in my eyes. I was so tired I could barely walk very fast or get very far. But I noticed when I walked, I would sleep a little better at night. I noticed that I needed that time to myself to collect my thoughts and work out the feelings that weren’t doing me any good. I began adding classes one day and talking to people. I started getting physically stronger. I began feeling alive again.
From day one, I was talking about what happened with anyone who would listen to me. Once we knew the name of the monster that took Sterling from us, I began researching it like it was my job. Sharing the facts I would find on social media. Wanting to change the outcome for other parents. I found myself being introduced to people and being asked to share my story more and more. I traveled to Washington, DC, twice, to share my story in the hopes that another family would never have to live this nightmare. It was never easy leaving my kids, traveling to another state, and talking about the hardest days of my life with strangers, but in doing so, I found healing.
I also started a project with our local hospital. I would make little blanket loveys using giraffe material. Sterling had a little lovey and he loved his Sophie giraffe. So I combined the two and attached a card with the signs and symptoms of CHD’s for parents to know what they might be looking for. We would give these out to all the babies born on his birthday at the same hospital he was born at. The next year we had enough for a week, then a month. My hope is to turn it into a year round project.
Which brings me to this word, hope. How does one find hope when you’ve held your child’s lifeless body? When you have experienced unanswered prayers for healing in this life. Made funeral arrangements for your baby, the baby you just celebrated his first birthday not even 2 months prior. When you physically hurt from the top of your head, to the point where even your hair hurts, to the tip of your toes. When you feel like you died too. Where is the hope then?
It’s there. I promise you that. It’s in the breath you take after your child takes their last. It’s there as you gently cradle their body long after they have left it. It’s in every moment of the hours and weeks that turn into months and years after. It’s the moments when you feel your baby on your chest when you close your eyes in the silence. The moments you decide to go through their clothes and donate or save them. It’s there. Even if you don’t feel it. I promise you it is indeed there.
My only advice is to love yourself the way you loved your child. Make sure you eat well. Drink lots of water. Try to exercise, even if it’s walking up and down the street or your own stairs in your home. Be sure to share as much or as little as you feel comfortable doing. Rest. When your heart is shattered into a million pieces and the pain is unbearable, find something that makes you feel again. Find people willing to support you, maybe even push you a little. There is healing, I promise. That is the hope in all of this. Living when your child has died isn’t easy, but I plan on being here for a long time telling you all about a little boy named Sterling who stole my heart, and I would love to hear all about your sweet child too.
Sterling’s Momma and his Bubbas living life with hope, love and joy.
Tori is a mom to six. One grown daughter and five young sons. Three of her sons have CHD’s. Sterling is the youngest and was a very happy, healthy looking 13 month old until his sudden death. It would take eight months after his death for the family to get answers as to what took Sterling from them, multiple congenital heart defects. At that moment, Tori knew she had to do something. She uses social media to raise awareness and to connect with other CHD families, started Sterling’s Heart Loveys, and is beginning to speak more publicly to raise CHD awareness. She has been invited to join the 2016 Consumer Task Force for Baby’s First Test, the nation’s educational resource center for newborn screening. Tori is also starting a Mended Little Hearts Chicago support group in her hometown with another CHD mother. You can read more about her journey in finding hope after loss at findinghopewithoutsterling.