After the dust settled on Daniel’s diagnosis, I went into overdrive. My initial coping mechanism was to collect as much information as possible. I researched HLHS and reached out to moms of other kids with CHD. Looking back, I think I was trying to make sense of all of it. I was seeking comfort in information and people, hoping that some piece of information would give me peace. (I will be documenting those conversations in a subsequent post.)
First, however, I must backtrack. My daughter, Hannah, was born 6 weeks premature. At the time, it was the most terrifying experience and wholly unexpected. I had a very healthy pregnancy, but I had something called Preterm Premature Rupture of the Membranes (PPROM). Basically, sometimes your water breaks, but you don’t go into labor. No one knows why this happens in some women.
When I went in to labor and delivery, everything happened fast. Because Hannah was already 34 weeks, they would have to induce me. Any time amniotic fluid leaks, it means there is a risk for infection, so it was better to go ahead and take Hannah early. Unlike David’s birth, they counseled, Hannah would be whisked away to the NICU in case she had complications with her lungs. I was completely terrified. During the birth, I was a complete emotional wreck, terrified Hannah was going to have some complications, devastated that I wouldn’t get to have things the “perfect” way I did with David.
To make a long story short, Hannah was born perfect at 5 pounds. She had no problems other than the fact that she couldn’t figure out eating. She had to stay in the NICU for 9 excruciatingly long days until she could drink 40 ml of breastmilk at once.
(Hannah after birth in the NICU. She had to have a feeding tube for the first two days.)
Once Hannah was born, I suppressed all fear and worry and went into super-mom mode. Any mom who has had a sick child knows what I mean. All worry and concern for myself went completely out the window; all my energy, thoughts, and actions went to providing for Hannah.
Something I quickly learned was Hannah needed ME with her. As thankful as I am for all NICU doctors and nurses, I knew instinctively that I was the best person to be there with Hannah. She and I had an unshakable bond. I could get her to eat the full 40 ml. I knew all the tricks to get her to stay awake. I knew the little signs that she was hungry. I knew what every single facial expression, body movement, and sound meant.
I obsessively pumped breastmilk every 2 hours so that Hannah could eat. I didn’t sleep more than 2 hours at a time for months. I felt that I had failed at a fundamental, basic level as a mother: my body had failed her. So, in return, I would give every ounce of myself to her until she could come home.
About 4 days in, I completely physically crashed. My aunt Pam told me in no uncertain terms, “Staci, you are going to kill yourself if you keep going this way. You NEED to come home and sleep.” I was completely dead on my feet, and I missed my sweet David, my 21-month-old son.
So I came home and slept that night. But I still, of course, woke up to pump. I had long since memorized the strict NICU feeding and diaper change schedule, so I knew that at 2 a.m. and 4 a.m. the nurse would feed Hannah. I would call at 2:30 a.m. and 4:30 a.m. to see how much she had eaten, to check on her in case anything had happened.
(Hannah at 1 month old; still 2 weeks before her actual due date)
All of this came back to me all of a sudden about 3 days after receiving Daniel’s diagnosis. If this was how I had felt with a perfectly healthy baby in the NICU for only 9 days, how much more intense will it be when I have a newborn who has just had a 6-8 hour open heart surgery, who would be intubated and hooked up God only knows how many machines, who will be fighting for his life from the moment he is born?
At that moment, I knew something had to give. I had to spiritually, mentally, and emotionally prepare for Daniel’s birth. But how?
In January, I started having my son David memorize pieces of scripture. The first one I had him memorize was, “Rejoice always. Pray without ceasing. Give thanks in all circumstances; for this is the will of God in Christ Jesus for you” (1 Thess. 5:16-18). As I was manically accumulating information, that verse kept coming back to me. As I was googling, facebooking, and calling people, I wasn’t doing much of calling on God.
In Psalm 56, David writes, “When I am afraid, I put my trust in you. In God, whose word I praise, in God I trust; I shall not be afraid. What can flesh do to me?” In Psalm 62, David writes, “For God alone my soul waits in silence; from him comes my salvation. He alone is my rock and my salvation, my fortress; I shall not be greatly shaken,” and in Psalm 63, “for you have been my help, and in the shadow of your wings I will sing for joy. My soul clings to you, your right hand upholds me.”
As a teacher of 5 different subjects (English composition, literature, rhetoric, latin 1 and latin 2), wife, and mother of two young children, my own devotional time was nonexistent except for my time at church. My prayer life was sorely lacking. To make matters worse, I always felt unsatisfied in my prayer life, and it was extremely easy to just not do it. But here, in the Psalms, countless times in the epistles, and by Jesus’ perfect example in the Gospels, we are shown that prayer and meditation on God’s Word should be a fundamentally important part of every single day.
Seeking information from people is good, important, valuable. But the one I should ultimately be seeking refuge in is the one I had been neglecting.
Several months ago I read The Prodigal God by Timothy Keller. In this eye-opening analysis of the Prodigal Son parable, Keller writes, “…the younger brother knew he was alienated from the father, but the elder brother did not. That’s why elder-brother lostness is so dangerous. Elder brothers don’t go to God and beg for healing from their condition. They see nothing wrong with their condition and that can be fatal.” He later writes in the book, “We must admit that we’ve put our ultimate hope and trust in things other than God.”
Receiving Daniel’s diagnosis has exposed many spiritual weaknesses within me. Why did it take Daniel’s HLHS diagnosis for me to realize I need to spiritually prepare for hardship??? Why did it take this for me to realize how I had taken access to our amazing creator for granted??? Why did it take this for me to care about and see other people who have long been struggling with CHD and other health problems???
In his book Prayer: Experiencing Awe and Intimacy with God, Keller writes, “…you should not begin to pray for all you want until you realize that in God you have all you need.” He describes the importance of inclining your heart (through the Holy Spirit) to want what God wants, to trust in Him regardless of what that means in this life, while simultaneously feeling comfortable enough to pour out your heart to Him.
In her song “More Than Anything,” Natalie Grant sings, “Help me want the Healer/More than the healing/ Help me want the Savior/ More than the saving/ Help me want the Giver/ More than the giving/ Oh help me want You Jesus/More than anything.” While I fervently pray God will heal Daniel’s heart, while I truly believe He is able, I want to trust in His plan for Daniel, for myself, and for my family above all else. No strings attached.
In Prayer, Tim Keller outlines Martin Luther’s recommendations for meditation on scripture and prayer. Luther suggests to pray, at the minimum, each morning and each night. Here are the steps involved:
Read scripture. Our holy conversations with God can only be had with the written Word of God. As you read: a) outline the literal meaning of the words you are reading. Take into account historical context. Understand the words on the page. b) Give thanks and praise based on what you have read; and c) Confess your sins based on what you have read.
After spiritual meditations, pray the Lord’s Prayer, personalizing each petition. Praying the perfect Lord’s Prayer as described by Jesus will help incline our hearts to God’s will and orient us to His goodness and mercy.
After steps 1 and 2, pour out your heart to God.
To conclude this long post:
I know my family will be faced with hardship in the coming months. I have a small taste of what that means because of my experience with Hannah.
After collecting tons of information, I realized the main thing I need to do is to keep my eyes firmly fixed on God, “the strength of my heart and my portion forever” (Ps. 73:26).
As I post blogs describing my journey with HLHS, including appointments, moving to Houston, birth, etc., I will be posting spiritual meditations.
My spiritual meditations will be largely based on Martin Luther’s guide to prayer.