‘But the other children are doing well!’ I’d go anywhere for him. ‘Someone must have a solution!’: Mom loses son to heart defect, starts retreat for other child loss moms, ‘It’s our way forward’

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“Four years. It has been four years since I saw your perfectly chubby cheeks. It has been four years since I held you and sang to you. It’s been four years since we had to walk out of the cardiac intensive care unit without you. The hardest walk of our lives.

You are the bravest and strongest person I’ve ever met. You fought so hard to be here with us. I will treasure those eight months and three days God gave us together for the rest of my life. We are one day closer to being face to face again, my boy. I will miss you every moment until that day. I am so proud of you and I love that you made me a heart mom, a title I hold so dearly. Four years is too long to be without you. I ache to hold you again. I’ll always be your mama, and you will always be my Huddy Buddy. Enjoy Jesus, sweet boy. I know you are with Him. I love you so much.

Courtesy of Amy Sylvestre

Hudson, our precious second son, was born with only half a heart. This severe congenital heart disease is called Hypoplastic Left Heart Syndrome (HLHS). Babies born with this condition must go through a series of open-heart surgeries to survive. Hudson had two of those life-saving surgeries, but after the second one, it became clear his life was going to be much shorter than we had hoped.

Courtesy of Amy Sylvestre

I’ve learned anytime doctors want to talk in a conference room, it normally isn’t great news. I sat around that enormous table too many times to hear hard news about our son’s health. The words coming out of their mouths made me physically sick and left me in a puddle of my own tears on the hospital bathroom floor. They were the experts, and they had done all they could.

Courtesy of Amy Sylvestre
Courtesy of Amy Sylvestre

Wasn’t there somewhere we could go to get help? Someone with a solution or a next step? We were at one of the best hospitals for congenital heart disease in the world. I held Hudson and told him if there was help on Mars, I’d be buying a rocket ship. I’d go absolutely anywhere to help him.

But we had the best care we could find and still, the words were, ‘His time is short.’

Courtesy of Amy Sylvestre

We had every hope Hudson would come home and grow up with his big brother, Graham, who was just two-years-old when we lost Hudson. Doctors believed with us that, with surgeries and medication, he had a shot at a wonderful life. He wouldn’t be able to play contact sports like football, but he could do almost anything he set his mind to. In fact, most of the children we were in the hospital with are home and doing well. I am so glad they are! We loved them so! They are Hudson’s first friends.

Courtesy of Amy Sylvestre

Hudson had additional challenges with his liver that made his heart condition even more challenging. Yet, he fought so hard. He made us so proud. He was loved by his whole family and the entire cardiac intensive care unit. He was loved and prayed for by everyone on his page at Hudson’s Heart, and people wore Hudson Strong t-shirts on his surgery days. We were held up by all of them.

Courtesy of Amy Sylvestre
Courtesy of Amy Sylvestre

The day Hudson died, his ‘half a heart’ was made whole and in that same moment, my heart broke into a million pieces. No mom ever dreams of being a child loss mom. It is a club no one chooses.

Courtesy of Amy Sylvestre

I spent many, many months being buried under my grief and believing powerful lies about myself and God. I believed I was not a good mom and I could have saved him somehow. I believed God was absent and didn’t care about my pain. I believed an unchanging holy God was cruel when He tells me He is always only good. I believed I failed Hudson. The lies rang louder in my ears than the truth. The grief felt like it might actually kill me. I felt as though I was living underwater and could not fully hear what others were saying to me. I was physically present but emotionally absent. My foggy grief brain made me forget everyday responsibilities like paying bills or where I left my purse.

I still have days where the loss clouds everything, and I let myself feel it. I let the hot tears flow, and I sit with the sadness. I acknowledge all the things I have lost. I have lost my son and in that, all his future school friends, his future wife, my future grandchildren, my sons’ brother, and a groomsman at their weddings someday. The layers of loss never end. It helps me to hold each one close and to name the loss.

Courtesy of Amy Sylvestre

People often ask me how I handle such a profound loss. It has been four years. They see me laughing, living, dreaming, being a wife, writer, and mom to Hudson’s brothers. They don’t see the quiet tears when they come in the shower or on a drive by myself. The tears will always come. I will cry for him when I’m 80 years old. But I will also live. I will thrive. I will belly laugh with my boys.

Through tears, I will hang Hudson’s stocking at Christmas and celebrate his birthday every summer with balloons. I will not let my grief kill me or rule me or steal time with my family. I will hurt, but I will also live.

Courtesy of Amy Sylvestre

So when people ask me how I live as a mom of child loss, I point to a few other moms who have gone before me and shown me how to take the next step. I have watched these moms who are a few years ahead of me. They are bright, beautiful, and living. They are not sullen or downcast. They weep. But they also laugh. They are professionals and running after their dreams, but they are also mamas missing their babies taken too soon. I cannot survive this journey without examples or shoulders to cry on. I would have succumbed to my grief that first year without these mamas who are too acquainted with loss.

Courtesy of Amy Sylvestre

Because of their examples, I am actively supporting other moms of child loss. I recently created a Heart Mom Journal to give to moms with children who have heart disease. It is a place they can pour out their big emotions, write memories or prayers, and be reminded who they are! I needed this when I was in the hospital for almost a year. I hope it will bless so many mamas who have a child in the hospital and moms processing the loss of their heart warriors.

Another way I am moving forward in my grief journey is through connection. Last year, I stepped out in faith and founded The WHOLEHEARTED Retreat for moms of child loss, miscarriage, and stillbirth. I needed it. I knew other moms of loss needed. It is our way forward. Each year, we will spend a sacred weekend together with name tags that identify us by our children.

All weekend long, I am once again, ‘Hudson’s Mom.’

Courtesy of Amy Sylvestre

Together, we look to God for hope and we link arms as we take one step forward in our grief journeys. We are not alone to be buried by the grief. Those mamas that were a few years ahead of me climbed down in the pit of despair. They showed me the way out. Now, I am doing the same for other mamas of child loss. Hudson was so brave, and now it is my turn to be brave. It is my turn to step down in the pit and show these other moms the way out.

If you are a mom of child loss, suffered a miscarriage, or stillbirth, I see you. I am so sorry for the loss of your precious child. My tears flow for you. YOU ARE NOT ALONE. I am here, and I will still in the pit with you until you are ready to journey out. There is more life to live, even with tear-stained faces. You are personally invited to the WHOLEHEARTED Retreat 2021.”

Courtesy of Amy Sylvestre

This story was submitted to Love What Matters by Amy Sylvestre from Chicago, IL. You can follow their journey on Instagram and Facebook. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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