I wrote the following letter to Sylvia the day before our scheduled c-section. I share it because I have been blessed to get to know several heart moms throughout this journey and I don’t know what I would have done during my pregnancy if they hadn’t been so willing to share with me. I have quickly realized how small and loving the “heart family” community is. Part of my mission now is to continue the blessing of sharing in hopes that Sylvia’s story might help even one person, within or outside the heart community, whether her story gives hope to a set of parents hearing for the first time their child has a chronic illness, or even helps someone change their perspective on life’s trials and blessings. Sylvia has, is, and will do amazing things through the power of The Lord, and I am so thankful He chose me to help her accomplish them.
Tomorrow is your birthday and I am both ecstatic and terrified to finally meet you.
The day I found out I was pregnant with you, so many wonderful daydreams surrounding your birth flashed through my mind. I pictured holding you tightly as you learned how to nurse and woke up to the world listening to the voices of your daddy and me. I pictured your big sister holding you for the first time, kissing your forehead and giggling about how cute you are. I pictured family and friends gathered in our hospital room, passing you around and marveling at your ten tiny fingers and ten tiny toes. I pictured your baptism at church, wearing the same gown I wore, your sister wore, and a big celebration with loved ones after. I pictured the most beautiful tomorrow and so many tomorrows after that.
But tomorrow will be different. Tomorrow I will get to see you, and maybe hold you, for a few seconds before you are taken to intensive care. You will wake up to the world hearing the nurses’ voices and the beeping of the many machines that will track your stability. Your big sister will meet you in a few days, but there will be no holding or kisses because you will be hooked up to your machines and we need to protect your fragile immune system from germs. I’m sure she will still think you are very cute. There will be no big gathering of loved ones in our room. In fact, we won’t have a room. You and I have to have separate rooms while I recover, but Daddy will be with you and I will visit as much as I can. We will only be able to allow one or two people in at a time to meet you. We have limited it to immediate family members because they need to be vaccinated in order to protect you. They will not be able to hold you and will have to wear masks as they look at you from a distance. I’m sure they will still marvel at your ten tiny fingers and your ten tiny toes. There will be no baptism at church. You can’t be in public until your big heart surgery later this year. Our family’s white gown will be replaced by a white hospital onesie as our pastor is coming there to baptize you “just in case.” Even though there won’t be a party with lots of people after, your daddy and I will be celebrating at your bedside along with the angels in heaven.
Many might think your CHD journey begins tomorrow, but that is not true. From the moment you were formed, you began fighting. You fought to keep growing even after your heart cells divided so uniquely that even some of the world’s top doctors are amazed by how special they are. You fought when your heart went into distress at 32 weeks and we were in the hospital praying it would settle down so that we wouldn’t have to deliver you prematurely. You fought to grow beautifully into a full term baby after that.
You were always a fighter.
You haven’t even taken a breath yet and you are one of the strongest people I will ever know.
So even though tomorrow and many tomorrows after will not be as I pictured, I can easily imagine you overcoming so many obstacles that will soon stand in your way. I can picture you thriving and defying, conquering and fighting. Because that is who you have been. Because that is who you are. And that is a beautiful picture.
This beautiful picture is who you are because this is how you were created. The moment you were formed, God had His hand over you, giving you this strength, and He will never leave nor forsake you.
So we need you to keep fighting. Your daddy and I will be there every step of the way, doing whatever we can to help you fight. By the grace of God, we will be given the tools to do so, and we will help you live out the incredible story He is writing for you.
Tomorrow will not be easy. It will not be what we expected. But tomorrow we get to see the face of a our little warrior, a face that will bless so many people, especially us. Your life has been and always will be one we will celebrate every single day with thankfulness and hope in our hearts.
We are proud of you. We love you so much, little fighter. Keep fighting.