More and more often recently, I feel like a fish out of water everywhere I go. John Steinbeck once wrote, “In utter loneliness a writer tries to explain the inexplicable.” I have been trying to help people understand, but now I’ve realized It’s impossible to understand unless you’re living it.
People ask me “why?” all the time. Why do you write? Why do you feel the need to share Daniel’s story? Why can’t you just move on? Why do you keep talking about Daniel’s medical problems? Why are you going back to teaching? Why are you putting so much effort into the care packages and Daniel’s Lion Heart Foundation?
Here’s my attempt to answer some of these questions. Thank you for asking questions, even when I read more into them than is really there. When you ask questions, I know you care. The greatest gift you can give me is earnest, unhurried, and sincere listening to a question you have asked.
Why do you write?
Over the last year and a half, I’ve sometimes gotten the question, “Why do you write your blog?” I have wrestled with the answer to that question. I’ve gone through several “whys”: to give voice to this struggle, to put into words how many heart moms feel in an effort to validate, to raise awareness for heart warriors and their families. All of these reasons are true, but there is a big “why” that I haven’t discussed with anyone:
I write these blog posts because I am a writer.
Writing is what I do, and it is who I am. It is how I make sense of my world. I have to do it for my own emotional and mental state. I guess the most poignant question is why do I feel the need to share?
I am not writing and sharing to prove anything. I am not writing and sharing because I think I’m brilliant or because I think the world will end if it doesn’t read my words. I am writing because it is what I do, and I am sharing because I’m desperate to be heard. Jonathan Safran Foer said it best when he wrote, “Why do I write? It’s not that I want people to think I am smart, or even that I am a good writer. I write because I want to end my loneliness.”
Why do you feel the need to share Daniel’s story?
Daniel is my hero. Had he been born 5 or 10 years ago as a premature baby with HLHS, he wouldn’t have had a chance. Even now in 2019 for a full term baby born with HLHS, the chance of survival until 1 year old is only 75%. I’ve been with this baby boy almost every single day of his life, and I’ve seen him go through hell. I’ll never stop talking about my boy and what he’s been through.
I am sensitive to the fact that Daniel’s story is HIS. This is HIS life. There are so many dark moments that I have stored in my heart and that I will share with him one day if he wants, so much only I know, so many moments I haven’t shared because they are too intimate. I want him to be free to define himself and live the life he has fought so hard for on his terms. I am trying to write more about how his diagnosis has impacted my life because I don’t want him to be known as the boy with HLHS. It feels so selfish and minor and stupid to write about my little struggles as his primary caregiver in comparison with the sheer level of pain and suffering he has endured and will continue to endure, but I am trying not to have his life spelled out for him.
Why can’t you just move on?
This question hasn’t ever been spoken to me, but I have felt it. I share “normal” looking pictures of Daniel on social media that perhaps gives people a false impression of where he is in his journey. I am not trying to pretend everything is fine in an effort to put the best face forward. More than anything, I am fiercely protective of Daniel. He is more than his scars. He is more than his feeding tube and his medications. He is a human being. I want people to see him as I see him. A strong, precious, resilient child of God who is more than his heart defect.
When people see his “normal” looking pictures, they think all is good now. His heart is “fixed” (it’s not), all of his struggle is in the past, life is good. Why do you keep talking about it? Why can’t you just move on? Why can’t you just get over it?
Today I was in Bible class before church. I love going to Bible class because it is a real treat to be able to study in God's house with other believers. For the last year, attending Bible class and church has become a great luxury, one which I am thankful to participate in when I am able. Every single question asked resonated with me as a heart mom, as Daniel's caregiver. At some point, I realized that I was probably making a fool of myself by sharing all of this stuff. I imagined people thinking, "Get over it, Staci. Not everything is life-and-death. Not everything has to be about Daniel. Why can't you just be thankful and move on?"
I don't know if anyone thought this; it was solely my own insecurities making me feel this way. I almost started crying afterwards because I felt so embarrassed. I thought to myself that I would just stay home with Daniel from now on so that other people wouldn't have to keep hearing me talk about my issues. I realized later this afternoon that no one else was thinking those things. It was me-- I was the one saying to myself, "Why can't you just move on, Staci? Why does everything have to be about Daniel? Stop it. Be normal. Be thankful. Move on."
What made matters worse is I had to hook Daniel up to his feeding tube and give him meds in the pew as church was starting. He started sweating because he is very heat intolerant, and then he puked all down the front of my dress, all while I was trying to contain Hannah and David as well. I imagined people thinking, "this is what she gets for having kids so close in age" and "no wonder her kids misbehave in church! She never has time for them with all she has going on with Daniel." It is one thing for people to think all is good with Daniel, and it is another when they realize he is still a medically fragile baby with half a heart. When I see the dawning realizing that, "Oh, wow, Daniel is NOT NORMAL," I feel hurt and fierce and defensive all at once.
When people ask how Daniel is doing and I try to tell them, oftentimes I am met with a nervous look in their eyes and repeated, “Well God’s got this. Look how strong he is. God would only give this to his strongest warriors. He doesn’t give us more than we can handle.” I don’t blame people for this response because it is how I would have responded two years ago. But it is painful because it sends a loud and clear message to me: YOU MAKE ME UNCOMFORTABLE. I DON’T WANT TO HEAR THIS PAINFUL STUFF. I CAN’T RELATE AND I WANT TO END THIS CONVERSATION AS QUICKLY AS POSSIBLE. Now I usually just say, "He is good! I am good! Life is good!"
Unless you’ve had a child born with an illness and watched in impotent horror for weeks as he suffered in pain with no guarantee that he would even live and knowing that you have to do this all over again in two years, you can’t imagine my world. The flashbacks, the triggers, the memories that come unbidden and keep me awake at night, the unrelenting fear of the future, the Fontan and beyond. It will never be over for me. Most importantly, it will never be over for Daniel.
The people who have helped me the most are other people who reach out to me because they know how I feel. After a particularly scary moment in the hospital, a dear friend embraced me and said, "Staci, I know how you feel. I remember..." and reminded me of her own experience with her seriously ill husband who later passed away. Another one called me and shared with me the traumatic experience of childbirth, a tragic story that altered her life forever. Another shared with me the story of her children, and how she had lost all three of them in tragic ways before their time. Another friend came to visit in the hospital even though he lost his infant son to a devastating condition. He endured all the flashbacks and triggers in order to be present with me in my grief, and then continued to send me text messages of encouragement. All these people were around me my whole life, and I didn't know their stories. I am so thankful for them and for their courage to share with me. They reminded me that I am not alone, and they have inspired me. To all those mentioned above— you are why I feel compelled to reach out to others.
***Just FYI-- Yes, God has this. He has allowed this to happen beyond any understanding of mine, and yes I trust Him. No, I don’t think God “gives” these devastating things to people based on their strength. Bad things happen because they are a consequence of living in a fallen world. God doesn’t choose certain people to give horrible things to because they are strong. Rather, He gives us the strength we need to endure it and to glorify Him through it. Gandalf says it best in response to Frodo when Frodo asks, “Why did (the Ring) come to me? Why was I chosen?” Gandalf replies, “Such questions cannot be answered. You may be sure it was not for any merit that others do not possess: not for power or wisdom, at any rate. But you have been chosen, and you must therefore use such strength and heart and wits as you have.” Please do not say these well-intentioned things to people because you don’t know what to say or because you feel the need to be positive. It suggests a bleak view of our amazing, merciful God. Here’s what you can say-- I see you, I love you, and I am fervently praying for you. Most importantly, you don’t need to say anything. Just listen. When you don’t have the words, give a hug.
Why are you going back to teaching?
I love teaching teenagers literature. My favorite thing in the world is to read great literature and talk about it with other people. I am confident that I can give 100% to my students and to my professional commitments while still remaining an active and present parent. I want to find myself again by going back to my first great loves: reading, writing about literature, discussion and literary analysis, and the sharing of knowledge.
Why are you putting so much effort into the care packages and Daniel’s Lion Heart Foundation?
I’m putting so much effort into these care packages because I feel the need to “serve others humbly in love” (Gal. 5:13) as a response to the way I’ve seen God work in my life through Daniel’s journey. God is always great and is always with us and working for our good, but when Daniel was in the hospital, it was like the curtain was pulled back. I could see Him move in tangible, real ways. No matter what happens in the future, I have the “confident hope” (Eph. 1:18) in the “incredible greatness of God’s power” (Eph. 1:21) because I have seen Him at work in my own heart. As a response to everything He has done for me, all I want is to “thank and praise, serve and obey Him” (from the explanation of the First Article of the Apostle’s Creed, Luther’s Small Catechism). The best way I can do that is to help bear the burdens (Gal. 6:2) of this life with others impacted by CHD.
Heart moms are the most giving people in the world. I went from knowing 1 heart mom to knowing 10 within a week of Daniel’s diagnosis. These moms didn’t know me but spent hours on the phone with me. They sent me care packages, sent text messages to check up on me, and gave me much needed hope in my darkest hour. I am sending these care packages because I’m inspired by them and want to pay it forward in whatever way I can.
Why are you trying to answer these questions; why do you care what people think?
As I alluded to at the beginning of my post, more and more I feel out-of-step with the world that used to be my home. I read a quote by Brendan Behan recently that really resonated with me: "At the innermost core of all loneliness is a deep and powerful yearning for the union with one's lost self." I am different now, and I know I can't go back. I just want to be able to relate to people again. I am tired of feeling like an alien. Maybe if I answer some of these questions, I will stop seeing the confusion in people's eyes when I talk.
Mainly, I hope people see a little glimpse into my world so that they see the real, pressing need that Daniel’s Lion Heart Foundation fills. Thousands of people are struggling in both literal and emotional isolation every single day. By financially and prayerfully supporting our efforts at DLHF, you are bringing a little joy to a heart mom who is doing her best to stay strong for her heart warrior.
When a caregiver drinks out of her beautiful coffee cup, slips on her soft and fluffy socks, and writes in her journal, she is experiencing tactile reminders of the community of comfort that surrounds her. When she feels lonely, scared, and worried, she has carefully selected Bible verses and written prayers to facilitate her relationship with God, the ultimate source of healing and comfort. Babies born with CHD have better results when they have active, involved, engaged parental advocates. When you give to DLHF, you are supporting a caregiver so that she feels more equipped to fight beside her heart warrior.