Let me begin by writing that it is not my intent to use this blog post to complain. I am not trying to complain, here. In another post, I explained that my intent with this blog is to give insight into what I am going through to those who may be experiencing something similar. In our social media culture, we often put our best face forward. It can be isolating and discouraging to feel like you are the only one who is feeling weak, defeated, and hopeless. So here is a small window into some of my own personal internal struggles.
Since March 30 when we received Daniel’s HLHS diagnosis, my world has exponentially expanded. My family and I are now part of the CHD (congenital heart defect) community. Within 24 hours of receiving Daniel’s diagnosis, I found out what an amazing group of people this is. People reached out to me over and over again–some were dear friends; some I had never met before; others I hadn’t spoken to in years. All were willing to pour out their hearts and share their stories with me.
The first one I spoke to was a person I got in touch with through Facebook. My aunt Pam was somehow friends with her, despite the fact that they had never met. Pam saw her posts about HLHS and heart defects, and she pointed me in her direction. From that conversation, I heard an amazing story. Her now 23-hear-old son was born seemingly healthy, but then started to fail within days of birth. She struggled for 2 months to get the doctors to take her seriously. Finally, after 2 months of taking her son to the doctor daily, they realized he had multiple serious heart defects–HLHS and transposition of the great vessels. Ninety-nine percent of babies born with HLHS who do not receive treatment immediately after birth die. Her son struggled for 2 MONTHS, and he is still alive today. He had the “perfect” combination of defects. Meaning, some blood flow was able to escape the other holes in his heart, allowing him to stay alive. He is now a pharmacy technician and seeks to go to pharmacy school.
We actually got to meet her son in person a week after receiving our diagnosis. I asked him, “Do you have any advice for us?” He actually replied, “No, I haven’t really felt like HLHS has affected my life. I mean, my parents are the ones who have struggled, not me. I’m sorry I can’t be more helpful.” At that moment, I completely broke down into tears. Not helpful? When he walked in the door, all I saw was a living, breathing MIRACLE. His presence was the most helpful thing I had experienced all week.
Another conversation I had with a long-time friend from church. Her daughter was born with tetralogy of fallot. At the time, she and her husband were stationed far away in Kentucky, and she had little support system around her. Her message was an inspiring one of reliance on God. She told me, “Staci, I just had to give it over to God.” At the time, I didn’t quite understand what she meant, but now I do. There are SO MANY THINGS that can go wrong. You can make yourself crazy thinking about everything that can happen. At some point, you have to give up the struggle and trust in Him. Her daughter has undergone multiple surgeries, but I just watched her get confirmed last weekend. Living, breathing HOPE.
Probably the most eye-opening conversation came from a parent of one of my former students. I had taught her son a couple of years ago, and I had NO IDEA he has HLHS. She reached out to me when she found out about Daniel’s diagnosis and invited me over for coffee. She shared with me how amazing God is, and how He has carried them through this journey every step of the way. She shared with me multiple profound things, but one that has stuck with me is, “We didn’t know how thankful we should be for the right combination of defects.” How could I have taught her son and be so completely oblivious?
Yet another conversation occurred with a friend whom I had lost contact with 15 years ago. She found out after giving birth that her daughter had tetralogy of fallot. She got in touch with me through a mutual friend, and had an hours-long conversation with me. “Staci, I know nothing can possibly make this better right now. It just sucks!” She allowed me to pour out my real emotions and fears, and she listened with empathy and total understanding. To be able to really feel with someone who gets it is an amazing gift.
Countless friends and acquaintances reached out to me with stories of friends of theirs who have children with CHD. I spoke with a woman whose infant son received a heart transplant and is doing amazing things. I also spoke with another whose daughter was born with HLHS and has met extremely difficult complications along the way. Her story of faith, hope, and strength in the face of adversity was incredibly inspiring. She freely spoke to me for hours, and she even mailed me a gift of snap-in-front onesies. I hadn’t even thought about what kind of clothes to get Daniel, and the long-sleeve, kimono-style onesies apparently are the way to go. I am so thankful for her willingness to share and her incredibly thoughtful gift.
A couple of friends have reached out to me and told me how “inspiring” my faith is and how they have enjoyed reading my blog. I am so humbled because what I am going through is nothing compared to the hardship they have faced in their lives. Clearly they have learned the importance of sharing pain and struggle, of truly seeing other people.
This is a lesson I am struggling with right now–how in the world can I share others’ pain, give others the validation and concern that I have received, and not go insane?
I am feeling so many things all the time. I am filled with doubt and uncertainty, but mostly overwhelming fear. When I saw Hannah hooked up to all of her wires when she was in the ICU recently, it broke my heart. I can’t imagine what it is going to be like letting my newborn son go in for open heart surgery days after birth. I can’t imagine what it will be like to see him intubated, hooked up to a million machines and wires. I am completely terrified.
I know from my experience after Hannah’s birth just how quickly I can physically and emotionally break down. I will be feverishly pumping every two hours. I fervently pray that I will be able to provide Daniel with breast milk while he is preparing for surgery and afterwards when he is recovering. But establishing milk is very difficult and painful. With Hannah, I got mastitis and battled extreme pain and high fevers for a couple of days before starting antibiotics. Not to mention, I will be a hormonal mess after giving birth and seeing my baby whisked off to the NICU.
I am also filled with guilt and fear concerning David and Hannah. I know, as described in previous posts, that I will go into super-mom mode when Daniel is born. I know I will somehow have the strength to deal with it all, but that will mean I won’t be around my other two young children. It is really, really hard raising two toddlers. David will be 3 and Hannah will be 2 when Daniel is born, and much of the work will fall on my mom after Daniel’s birth. We will be living in an RV in the middle of Houston. She will have to load them in the car multiple times a day, and vigilantly try to keep an eye on two very independent toddlers. SO many things, accidents, can happen. I am so afraid that somehow something bad will happen while I am unable to be with them.
After speaking with one of those I described above, I was added to a Heart Moms group on Facebook. Before adding me, she told me, “You will read some really heartbreaking stories, but it is a great group to be part of.” For over a month, I have read multiple stories daily about people dealing with overwhelming odds. Many, many heartbreaking stories of pain and loss. I have also had multiple other people reach out to me, offering to speak to me about their own stories.
I am very ashamed to say this, but I think I have compassion fatigue. I don’t think I can possibly deal with one more story right now. I turned off all notifications on my Heart Moms group, and I have been making an effort to bury my head in the sand. I feel this not only with other CHD families, but with anyone else wanting to have any kind of conversation with me about the struggle they are having in their lives. I feel like my heart will just completely break apart if I deal with anyone else’s struggles right now.
I know from previous Bible study that this attitude is not okay. Repeatedly in the New Testament, we are told to “encourage one another and build one another up….encourage the fainthearted, and help the weak, and be patient with them all” (1 Thess. 5: 11, 14). Paul writes “Bear one another’s burdens, and so fulfill the law of Christ” in Galatians 5:2 and, and “Let each of you look not only to his own interests, but also to the interests of others” in Philippians 4:2. John goes so far as to write, “But if anyone has the world’s goods and sees his brother in need, yet closes his heart against him, how does God’s love abide in him?” (1 John 3:17).
One of the amazing blessings I have experienced through this whole ordeal so far is the very thing I am struggling with right now– my own little world has hugely expanded. I no longer have the luxury of being oblivious to the suffering of others. Whether I like it or not, I am a part of an incredibly resilient, inspiring community of heart warriors.
Matthew West has a song called “My Own Little World.” At the beginning, he sings:
“In my own little world it hardly ever rains I’ve never gone hungry, always felt safe I got some money in my pocket, shoes on my feet In my own little world: population — me
I try to stay awake during Sunday morning church I throw a twenty in the plate but I never give ’til it hurts And I turn off the news when I don’t like what I see It’s easy to do when its population — me
This exactly describes how I lived my life until March 30. He concludes the song with:
“Father, break my heart for what breaks Yours Give me open hands and open doors Put Your light in my eyes and let me see That my own little world is not about me
What if there’s a bigger picture? What if I’m missing out? What if there’s a greater purpose? That I could be living right now
I don’t wanna miss what matters I wanna be reaching out Show me the greater purpose So I can start living right now Outside my own little world”
Because of our situation with Daniel’s diagnosis, I have the opportunity to reach outside of my own little world and truly see other people. I feel like the Grinch when his heart grew three sizes at the end of the story.
One of my students this year gave me the book If God is Good: Faith in the Midst of Suffering and Evil by Randy Alcorn. His mother wrote in the card attached her family’s heartbreaking story. Her husband (my student’s dad) had been dealing with huge health struggles for years. This was in April of the school year, and I had been teaching this student for 8 months, and I had no clue about his own personal struggle. She wrote that reading this book was incredibly helpful to her, and she could see the amazing ways God has been with them every step of the way through their struggle.
While reading the book, I came across a C.S. Lewis quote given by Alcorn: “If I had really cared, as I thought I did, about the sorrows of the world, I should not have been so overwhelmed when my own sorrow came.” Reading this was hugely convincting. As I have read the devastating ordeals others have gone through, I am reminded daily how small my own struggles are. I am so incredibly blessed in so many ways, and there are others who are really suffering.
With that all being said, I have a question. All of you who have to see horrific things all the time–how do you not get desensitized? How do you see all the pain and not go insane? How do you not shut down from compassion fatigue?