On April 4, 2018, I learned the truth:
I am a heart mom. I am going to give birth to a baby with half a heart.
For days I had convinced myself that it wasn’t real– Daniel did not have HLHS. It was all some mistake.
But it wasn’t a mistake.
For months after his diagnosis I wrestled with God. How in the world can this be good? How can you be a good, all-powerful being–the creator of the UNIVERSE– and still allow babies to suffer?
I read books like Timothy Keller’s Walking with God Through Pain and Suffering and Randy Alcorn’s If God Is Good. I studied my bible. I prayed. I also did a lot of cussing and crying, but there was praying in there, too.
On July 19th (read more here: Roller Coaster), I came face to face with reality. Daniel was 5 days old. His oxygen saturations were in the high 90s, and I thought mistakenly that was a good thing. I was exhausted and swollen but incredibly happy that Daniel was stable. I thought the plan was to wait for a month to do the Norwood until Daniel reached 38 weeks gestation. I had shut out the reality of surgery, locked away deep inside. I’ll think about it tomorrow, I told myself.
Around 4 p.m. that day, a cardiologist came to the NICU. He was accompanied by several other people. He had a stack of forms, which is never a good sign. I would later learn those were consent forms.
(Daniel at 5 days old on July 19, 2018. This is one of the only pictures I will ever have of him without his scars)
The cardiologist told me that Daniel would be going in for pulmonary banding surgery the next morning at 7 a.m. High oxygen saturations are bad for a baby with HLHS, especially when it is accompanied by fast breathing like Daniel’s. It meant Daniel’s lungs were being overloaded with blood. If it continued for a month before the Norwood, his lungs would be irreparably damaged. The surgeons needed to put tiny bands around Daniel’s pulmonary arteries, limiting the blood flow to the lungs.
I was absolutely devastated. Accepting the PA bands surgery was the hardest part of Daniel’s journey for me. This is ironic because in complexity the PA bands surgery is NOTHING. The surgeons don’t have to even cut the heart or any blood vessels. He didn’t even have to go on bypass. But for me, it felt like the end of my world.
Do you see how tiny he is? He weighed 5 pounds, 2 ounces. He was really jaundiced. He seemed so incredibly fragile.
I felt bonded to Daniel while I was pregnant with him, but my incredible love and devotion for him was magnified times a million when he was born. He was safe in my womb; outside my womb he was in danger. It was my duty, my privilege, to protect him. I would have died to keep Daniel safe. I still would, in a heartbeat.
Do you remember the last time you had a temper tantrum? My kids have temper tantrums every day. Every night when I put Hannah to bed, she screams bloody murder while I try to rock her to sleep. She fights and kicks for a time. She unleashes her fury, hoping maybe it will stop me from putting her to bed. When she realizes she won’t convince me, she finally just gives up and accepts it. I did the same thing on July 19th when I received the news of Daniel’s impending surgery.
Sitting in the uncomfortable chair beside Daniel’s NICU incubator, I cried for hours. My face was puffy because I had just given birth, but my eyes became almost swollen shut as the tears came rolling down. I can’t really explain how wrong it felt to allow them to put Daniel in that box (pictured above) and roll him away for surgery.
When they took Daniel to the operating room, an incredible feeling came over me. The tears cleared away, and I felt peace. Literally one moment before I thought I was going to pass out from grief, and then all of a sudden– acceptance. One thing I knew for certain beyond all doubt.
I have no idea how this can be good, Lord, but if this is Your will, then it must be.
The journey with Daniel has been incredibly difficult at times. I have cried and raged more than I would like to admit, but through it all is the incredible Truth that Jesus expressed in John 16:33 (ESV): “In the world [we] will have tribulation. But take heart; I have overcome the world.”
Before July 20th, I knew that truth in my head. As I was walking away from Daniel before his first surgery, I knew it in my heart.
In that moment, I was “transformed into a new creation” (Gal. 6:15). I saw God move in amazing ways. I’ve always been timid about sharing my faith with people, but all of a sudden there were people everywhere encouraging me spiritually: Daniel’s nurses, some of his cardiologists, his surgeon, the PICU staff. Tons of these people quoted scripture to me, prayed with me, prayed over Daniel. People I’ve never met who sent us care packages. A wonderful hospital chaplain who seemed to come visit at exactly the perfect time everyday. A sweet, delightful social worker who did art projects with me and brought joy to my life at some of the darkest moments. God always provided and was always there.
The moment I let go of my denial, the moment I accepted the life given to Daniel, was the moment my faith in God transformed from belief to love. I wanted to learn everything about Him. I sought Him out in his Word. I prayed more ardently and eagerly.
I was FREE. Free from doubt, free from fear, and free from control. I don’t read and pray and write and share because I feel like I have to. I do these things because I want to. How can I keep this to myself?
You see, I have been given this incredible gift. It is the gift of PEACE that surpasses all understanding (Phil. 4:7), given by the “God of hope” (Rom. 15:13). It is the truth that “we are all saved the same way, by the undeserved grace of the Lord Jesus” (Acts 15:11, NLT).
It is the fact that nothing can “separate us from the love of God in Christ Jesus” (Rom. 8:38, ESV). Not CHD. Not ECMO. Not heart failure. Not strokes, cardiac arrest, or brain bleeds. Not pain. Nothing!
For the first time in my life, I sought people out to pray with them. I talked with them with sincere interest about their story, not because I wanted to push the gospel on them, but because I cared about them. I saw them hurting, and I wanted to be there with them in that pain. There are few things more comforting than feeling your pain freely in the presence of someone else who understands your pain.
I am sharing this story of spiritual transformation with you for the same reason I sought my fellow PICU parents out to share with them. I can’t not share. When you love Jesus, you love the people he came to die for.
The only way to let go of denial is to immerse yourself in the truth.
I was in denial about Daniel’s diagnosis because it meant complete uncertainty. It meant recognizing my inability to anticipate the future and control the chaos around me. When he was wheeled away for his first surgery, I mourned for his “normal” life.
Surgery is Daniel’s normal. “Does he have a cold, or is he in heart failure?” is Daniel’s normal. Rushing him to the ER because he “doesn’t seem right” and his lips are blue and it could be because he was sleeping deeply or because he has pneumonia is Daniel’s normal. When they took him to the OR, I mourned for the life he should have had and began to embrace the life he was given.
“If you abide in my word, you are truly my disciples, and you will know the truth, and the truth will set you free…So if the Son sets you free, you will be free indeed” (John 8:31,32,36)