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Roller Coaster

10 days.

Daniel has only been in this world for 10 days. It has been the longest 10 days of my life.

I am operating in a bizarro-world where time doesn’t matter; I am outside normal time parameters. My days go in 12 hour PICU shifts, and hour by hour things change.

It is an incredibly difficult roller coaster, only it is not all fun and games like the Titan or Texas Giant at Six Flags. It is a roller coaster where every little dip, twist, and turn seems to threaten my baby’s life.

“You will have good days and bad days,” they said. “Nobody in the PICU continues on an unbroken upward trajectory. You will have gains, but you will also have setbacks.” I didn’t realize how true that was a couple of days ago, but I am beginning to find out.

Instead of sharing some of Daniel’s progress with this post, I am going to share with you some devotional thoughts. This is more of a mental and spiritual health post.

In a previous post, I wrote about “Spiritual Preparation.” I thought I could emotionally, mentally, and spiritually prepare for what I would face with Daniel in the hospital.

Here’s a secret– YOU CAN’T prepare mentally or emotionally. All the knowledge about HLHS, about CHD, all the talking to other moms…. None of that could prepare me for seeing my sweet little baby intubated, watching him have Brady after Brady episode where his heart rate dips and oxygen saturation drops and he stops breathing, watching his mouth turn blue when he de-sats, watching his little toes turn blue with every drop in body temperature, watching him get picked, prodded, poked, and punctured.

And Daniel “isn’t even sick,” they tell me. This is all par for the course with an HLHS baby. This is our new normal. This is Daniel’s only normal.

When Daniel looks at me through all the wires, I wonder what he thinks. I imagine he is wondering what is happening to him. All of these IVs, lines, wires, are causing him immense pain and discomfort. I wish I could explain to him that they are saving his life. Unfortunately, I can’t explain. He is an infant, and the explanation would be way too complicated. All he can do is look and wonder why, and all I can do is wrap my arms around him, pet his head, sing to him, and love him.

I imagine that this is how it is when we experience life’s hardships. When painful things are happening to us in our lives, how often do we blame God and accuse Him of not being there? How often do people see pain and suffering as an indication of God’s apathy or as proof of his powerlessness?

As for me, I am realizing what it means that God is sovereign. I am realizing that all of this is according to God’s plan, and it is way too high above me to understand it. I am trusting in God’s mercy, grace, and love above all else because I have seen Him provide for us first hand through the most difficult time in our lives.

On the first day after Daniel’s PA bands surgery, our nurse prayed with us. She and I had a wonderful conversation about what it means to be a Christian, and she played Christian music in our hospital room. A few days later, one of the Pediatric ICU doctors asked the significance of Daniel’s name, and I shared with her the story of Daniel in the lion’s den. I read her the following verses from Daniel 6, the verses that I read the day of Daniel’s diagnosis.

“For he is the living God and he endures forever; his kingdom will not be destroyed, his dominion will never end. 27 He rescues and he saves; he performs signs and wonders in the heavens and on the earth. He has rescued Daniel from the power of the lions.”

The doctor came back to me a few days later and told me that the verses I shared with her had been on her mind, and she was really comforted by them. She said she remembers Daniel in her prayers now. Dr. Salazar quoted a Bible verse to me the day after Daniel’s surgery. I have had amazing family support, and the prayer warriors all over the world who are covering Daniel, our family, and the medical personnel caring for Daniel continue to inspire me. Our home pastor has been a constant source of spiritual and emotional support, as have all the other pastors who have reached out to us, and who continue to pray for us in their churches. Yes, I have seen God’s love at work right in front of my eyes, tangible and real in ways that weren’t before, and all because of our present sufferings.

Luke 11:11-12 says ““Which of you fathers, if your son asks for a fish, will give him a snake instead? Or if he asks for an egg, will give him a scorpion? If you then, though you are evil, know how to give good gifts to your children, how much more will your Father in heaven give the Holy Spirit to those who ask him!” If I, who am a fallen, sinful person, can love Daniel so fiercely, I know that God’s perfect love surrounds us through life’s difficulties, not because the hard times are orchestrated by God in some evil, divine plot, but because He constantly “works for the good of those who love him, who have been called according to his purpose” (Rom. 8:28). 

I am trying to hang on to my sanity for dear life. I am surrounded in my PICU hall by other CHD children who have just had surgery or who are having difficulties. I am starting to become aware like never before that our lives will never be the same.

At first I was tempted to look at Daniel’s Norwood and recovery as the gatekeepers, after which we could return to “normal” and go home to our “normal” lives. Now I am beginning to understand that everything has drastically changed for us. David and Hannah are Texans with amazing capacity to play in 100 degree temperatures. We constantly are outside under the “Avatar Tree” (as my dad calls it). The kids never wear shoes, and we have four dogs. Daniel will probably never be able to play in heat like that because of his heart condition. Now we are going to have to be fastidious about germs, the kids will have to wear shoes all the time, and we aren’t going to be able to leave the house for at least 6 months. You may think I am being dramatic, but I am not. Daniel CAN’T get sick because his heart condition makes him immunocompromised, and any little bug that isn’t a big deal in heart healthy children becomes a huge deal for him. When we get to come home, it will be flu season, and he has to stay healthy before his Glenn procedure, which should occur some time between December and February. So even when we are home, we can’t have visitors. That includes David and Hannah; if they get sick, then Daniel will get sick.

And in the back of my mind, I am terrified that we may never even bring Daniel home. I can’t shake the terrifying fear that something is going to happen to him here. He is 6 weeks premature, and he has a serious heart defect. The guilt that I couldn’t carry him to term, the feeling that somehow I am responsible for his heart condition, the guilt that David and Hannah are missing their mommy, the relentless fear that something will happen and Daniel will never make it back with us….

Throughout all of this, I have been wrestling with God. I know that God’s will prevails, and many horrible things happen to people all the time. I know that Daniel may not make it out of this, and that has angered me in the past. I want God to submit to MY will. But God doesn’t work like that. On the day that they wheeled Daniel away from me to take him to the operating room, I realized how powerless I am. It was a feeling of total surrender.

I am reading the Psalms backwards, beginning at Psalm 150. I am writing them down in a journal at Daniel’s bedside, relying on the prayers of the Psalmist when I have “groanings too deep for words” (Rom. 8:26). In parentheses, I have added words in order to change and personalize the prayer.

Hear my prayer, O Lord; give ear to my pleas for mercy! In your faithfulness answer me, in your righteousness! Enter not into judgment with your servant, for no one living is righteous before you. For [fear] has pursued my soul; he has crushed my life to the ground. He has made me sit in darkness…Therefore my spirit faints within me; my heart within me is appalled. I remember the days of old; I meditate on all that you have done; I ponder the works of your hands. I stretch out may hands to you; my soul thirsts for you like a parched land. Answer me quickly, O Lord! my spirit fails! Hide not your face from me, lest I be like one who goes down to the pit. Let me hear in the morning of your steadfast love, for in you I trust. Make me know the way I should go, for to you I lift up my soul. I give thanks, O Lord, with my whole heart; before all else I sing your praise; I give thanks to your name for your steadfast love and faithfulness….Though [we] walk in the midst of trouble, you preserve [our] lives; you stretch out your hand…and your right hand delivers [us]. The lord will fulfill His purpose for [Daniel, David, Hannah, and our family]; your steadfast love, O lord, endures forever. (from Ps. 143 and 138).

(Not even kidding– as soon as I typed that prayer, a chaplain walked into our PICU room. I haven’t heard from a chaplain at the hospital all this time, and one walks right into my room as I type that prayer. We talked and prayed together. Another blessing.)

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