It’s hard to believe she’d be 8 years old today. So much has happened, and she impacted my life in so many ways in her short little life. I miss her and I wonder all the time what life would have been like if she survived. She’s the one who gave me my mom title I desired so fiercely. I don’t know which one of us fought harder. She was amazing right from the start. Knowing what I know now. I wouldn’t change it. There’s things that I wish I did more of. Like take pictures that first day, before all the tubes and cords and machines. I wish I would have fought harder to be with her more at the beginning. But I was at her bedside every single day. I watched her fight every day. I watched a machine pump the blood for her heart. I learned so much medically during my time with her (even though I relearned it with Ryder). The world opened up a whole lot more for me because of her. I’m choosing to do more in her honor, more for the CHD world and the single ventricle kids. I want to do more for the families that CHD has impacted, especially for those parents that grieve their child that fought so hard.
8 years. 8 birthdays we haven’t had her here. This day is always so so hard. What should be a celebration is a day of grief. The survivors guilt I have to still be here, being a mom to two more kids is rough. We try to do a family day with Remi. We have gone to a couple different zoos, one year we took her to go get a build-a-bear, sometimes we go out to the cemetery. The cemetery is a weird one because all though her earthly body is buried there its not where I feel more connected with her. The cemetery just reminds me how much I have lost.
Many years ago my dad bought 6 burial plots. The back left is where my brother’s little boy Jameson is buried. It was the first one used. The day he was buried was the last time I saw my dad alive. He’s in the front right plot. When Zoey died I wanted her close to him. She’s buried almost on top of him on his left. Her body is not buried very deep. When we had her funeral Tom and I were the ones to lower her tiny casket down. She was only 36 days old when she died.
Last year is when I was pregnant with Ryder. I was 20 weeks along exactly and had my anatomy scan scheduled because I already had the day off of work to spend the day together with Tom and Remi. We went to the perinatologist we had with both Zoey and Remi. Everything up to this point looked great for this pregnancy. I asked the ultrasound tech if there were four chambers of the heart. She showed me were all four were. I was relieved I figured we were going to have a great day but luck was not on my side. We found out about Ryders heart on Zoey’s 7th birthday. Devastating is an understatement.
Now a year and a surprise emergency trip down to Children’s later, I dreaded this day was approaching as I watched my son fight for his life in the cardiac ICU. We were in the hospital for 12 days. It was longer and worse of a recovery than his second open heart surgery. The last three days they kept telling me we were very close to going home. But with any cardiac baby it feels like 1 step forward and 3 steps back. I told our nurses “I just want to be out of there by the 10th. I can’t be here that day.” Most of our care team knew about Zoey and our history with Children’s. Some of Zoey’s doctors and nurses are still there. They knew how badly I didn’t want to be there today. I stayed strong and advocated. I think I only cried about it twice leading up to it.
I’m so thankful for one specific member of our care team who knew how important today was and how hard it was going to be for me. She made sure the rest of the staff for us on Thursday knew we needed to be out of there. There were a couple hiccups but she made that happen and I am ever so extremely grateful to her.
Today I was able to grieve and celebrate at home. Because of Ryder’s illness we didn’t go anywhere but I was able to spend time with my kids. I got to enjoy being home with Ryder and watch him be so much happier. I reflected on being a heart mom and bringing a child home from the hospital which was never a possibility with Zoey. I was able to go to Remi’s school and participate in Mom’s day with her. We had pizza and ice cream tonight too. While she is not physically here with us we will continue to celebrate her, her strength, and her influence on our lives.
Happy Birthday Zoey. We love you so much.
Heart Bound Mama 