This time of year always brings me back and I force myself to go back. That may sound bad but for anyone that has been through an extended hospital visit with someone they love, you can relate. You truly never want to go back and you really want to just push the memories away.
But every year, I surface it all. It has been so healing to do it and it has been a wonderful time for my son to ask questions and get the answers he is ready for. We have been doing this for 9 years now. This will be the 9th Annual Socks for Surgery! Wow, I cannot believe it and when I enter the halls of the hospital, it feels like yesterday.
My son was born with Heterotaxy Syndrome. His organs were all affected in some way. Most of his organs are flipped meaning his right sided organs are on the left and vice versa. It also can create heart defects and spleen issues. In his case, he does not have a spleen and his heart only had 2 chambers. To say our world was turned upside down is an understatement. We had 2 healthy beautiful children and going to the ultrasound was more about finding out if it was a boy or a girl than it was seeing if everything was developing ok. We truly take everything for granted until it actually happens to us. In a blink of an eye my husband and I were whisked into another universe. There was new terminology and new rules. And we were faced with decisions no parent should ever have to face. We don’t have medical degrees. How can we make these decisions?
Through faith, trusting our gut and asking a million questions we loved him through it. We stood side by side with the doctors and loved this boy through it. And we prayed and we prayed.
Our prayers were answered! He had 4 surgeries; 3 open heart surgeries and a GI surgery before he was 17 months old. When he was born we spent his first 20 days in the hospital. He had 2 surgeries and we held our breath as we watched him recover and get strong. We watched the nurses and the doctors tend to him with such care. And to say we have gratitude in our hearts is an understatement. We were faced with so many decisions and looking back I don’t know how we found the strength to push through it. His face, his smile, his eyes, our love–Those are just a few of the forces pushing us through each day.
For the first 20 days, he wore a diaper and a million cords! Oh, my eyes water just thinking about him being hooked up to all of those cords and machines. The sound of beeping makes my skin crawl to this day! And the scent of any hospital leaves a pit in my stomach that takes me back to the ache I had in my heart!
People would say, “What can we do? What can we do?” We had so much love around us. I will never forget all of the kindness we were shown. But this question was one I struggled with. There wasn’t anything anyone else could do. Pray for us.
One early day after his first surgery his temperature was off. They brought in some heating lamps and put socks on his feet. I remember rubbing his little toes and loving the little pattern of the socks. They were so cute. And from that moment, when people would ask me, “What can we do?” I would tell them to bring me cute socks. I wasn’t able to dress him in cute clothes and I wasn’t able to show him off to all of our loved ones. But I could sponge bathe him every day and I could change his little socks. It became such a sweet memory. The nurses would come in at shift change and peak to see what socks he had on. It was a moment of joy in a sea of uncertainty and fear.
So, on his Heartiversary every year, September 14th, we go back to his hospital to the Pediatric Surgical Heart Unit. We pass out care packages and balloons. He hand delivers a care package and balloon to every room on the floor. And we spread hope! I always said I would spread hope if we ever made it through it all. There weren’t any healthy kids on those floors to show me that things would be okay. And there were days when the only hope I could find was deep in my heart as I talked with the man upstairs and begged to keep my beautiful son. I guess it was one of the bargains I made in my many prayers. “If you let me keep him, I will spread hope!”
I am so honored to do it! I feel so fortunate to be able to show them what a healthy heart boy looks like. I talk with the parents. Many of our exchanges include hugs and tears. My message to them is, “I have been where you are and we survived it. Hang in there! You can do it! Be strong. There is life after surgery! Look at this healthy boy who goes to school and plays baseball!”
So this next month, we will spend our time shopping for the cutest socks you’ve ever seen. We buy Beanie Babies because we still have the little dog we received on our first ambulance transport. His names is Bones and he is pictured here. He never missed a visit or a surgery. And we treasure him to this day. He goes with us every year for his Heartiversary!
It is our way of giving a special thank you to our surgeon, doctors, cardiologists, nurses and staff. Advocate Children’s Hospital. The Heart Institute. The Pediatric Surgical Heart Unit. And all of our family and friends that loved us through it! September 14th is a celebration of his healthy heart, and SO MUCH MORE!
And thank you to everyone that has donated to our cause along the way! Your generosity and love is truly overwhelming!
A blessing from above and paying it forward! Happy Heartiversary sweet boy! You are so loved!
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