Dear Prayer Warriors,
Anna’s 11th birthday was about a month ago. It’s surprising how this day has turned into one of the most joyful days on the calendar because 11 years ago it was the opposite. This is a foreshadowing to remind me that one day my son's Simon’s death day won’t be a day of grief on the calendar because He is hidden in Christ, promised by God to arise one day! This year I wanted to tell the story of Anna a bit more. Back when I prayed my humblest prayers and saw God intervene in His way.
King over the Flood
Anna’s traumatic birth, I know some of you have been with us these 11 years. Do you all remember how inadequate I felt being a first-time father and “surprise” a special needs dad? I will never forget looking at Anna’s motionless ultrasound screen and my bride’s weeping words “it’s not supposed to be this way.” Minutes later we were told that Anna has a better chance outside the womb than inside because they found a faint heartbeat. She was born in complete silence aside from my whispered prayers in my wife’s ear, and the methodically composed surgeon talk. Anna Elizabeth looked motionless and limp. She was given a super low Apgar score of 2 out of 10 because her heartbeat held and could be detected. Do you recall the enormous storm of unfolding diagnoses in the first month? I didn’t speak doctor, so the steep learning curve of medical terms, medicines, tests, and machinery was defeating. We wanted none of it.
God gave me joy amid moments of calling people to tell them Anna was born 6 weeks early clinging onto life. I was a first-time dad and no amount of complication was going to take that away from me. Perhaps it was a shock mechanism, but God used it for good. This inner city hospital was for low-risk deliveries only, there was no neonatal unit. In the Lord’s providence, on a Sunday morning in snowy Chicago there was a neonatologist sent there from Children’s hospital answering a request to check on another baby born in stable condition but needing to be evaluated. She scrubbed in and intubated Anna. We received the best of care for Anna at a place where we should not have gotten it.
I got a chance to see Anna as Lindsey was getting stitched up, she still wasn’t moving but was wired and tubed everywhere. I nestled my pinky into her itty-bitty palm and sang her hymn Wonderful Grace of Jesus. In response she squeezed my finger and opened her eyes for the first time as if to say “I know you!”. As she was taken away, Lindsey got her first look at Anna through a submarine circle on the transporter. I remember her reaching through it and telling Anna how much she loved her and was going to be with her soon.
Baby Steps, Moment by Moment
Anna was taken from her mom for 3 days. My bride Lindsey was post cesarean in “stable” condition in a Chicago hospital with full shock and trauma, grasping to comprehend things like me. Baby Anna was taken away clinging to life in critical condition 30 minutes away in an Evanston hospital. “God, who should I stay with?” I remember asking. My mind kept on trying to figure out what I should do as I cried out to God. My mind said “Anna”, my heart said “Lindsey”. It was the Lord who reassured by thinking upon His Omnipresence, “God’s at both places, He will be where I cannot be.” This thought helped take baby step #1, it helped me stop trying to control things, but to trust things. I held Lindsey’s hand as her whole body trembled for hours, I answered several calls from doctors asking for permission to do things to Anna of which they attempted to explain only moments before. Our church served as a taxi service for me, I visited Anna only after Lindsey’s blessing and once she had company in my absence. By God’s grace, I was keenly aware that no matter how unnatural, difficult and heartbreaking this was for me; this experience was exponentially more difficult for my bride.
Weeks went by praying for Anna’s blood pressure, for swallowing, and praising God for her soft fontanelle that allowed us to put off brain surgery long enough for her to gain weight. In truth the NICU was one step forward, two steps back for a long time. We continued to experience a downward spiral of “no” answers to the prayers we were requesting. Because of who God is, the agenda of miraculous healing was on my mind but God had another path for us to walk and abide on. I negotiated my prayer, “No brain damage God.” Then the MRI showed extensive brain damage. “Clear her ventricles Lord so the blood clots filter out.” That didn’t happen. “Ok, well prevent the PVL from spreading in the white matter of her brain” New images showed several holes in her white matter still expanding. I further wanted to stop things: “God you made the brain with the ability to drain cerebrospinal fluid naturally, do it please.” God said no. I remember meditating on the term “have pity” and “begging” God for mercy. I remember asking “no more diagnosis of disability” because a couple of weeks went by; In the following years came Hypsarrhythmia, Epilepsy, and Polymicrogyria.
My insistence on figuring out “how God is going to help” came to a head regarding Anna’s Hydrocephalus diagnosis. According to the doctors, Anna needed a shunt installed. This was where my pleading for mercy and the supernatural healing gave way to complete surrender to God. In the dead of winter, I went on a frosty, riverside walk in the snow. Just me and the Lord. I wrestled with God about the shunt surgery, a brain surgery at 6 weeks old. It’s a procedure that comes with a 70% infection rate and 90% chance of needing revisions (more brain surgeries) within the first year. I really did not want this. The miracle didn’t come with supernatural healing, it came from within my faith, on that walk, where I let Him know how scared I was. I laid down my prayer agenda for what He wanted to do. I waited quietly wanting to learn, surrendering the last bit of tug-of-war rope to Jesus.
On that walk the Lord didn’t scold me, or assert “I got this.” But he did take me in my mind’s eye to a memory I made when I was 16 on a trash dump in Manila, Philippines. I remembered kids rummaging through the Smokey Mountain trash dump and those that joined us for church that day. The horrible smell, I remember asking God that day “help me never forget this.” Just like that, on my snowy walk in Evanston, the fear of the shunt surgery was superimposed with my memory of the poor in the Philippines and this thought came: try and see the shunt surgery as a provision not a Goliath because if Anna was born in a third world country, she would not have this option and would die.
Jesus gave me a peace that surpassed all understanding just in time for my daughter’s brain surgery. Sure, I still was shaking and counted on prayer warriors, brothers and sisters in Christ in the waiting room with us. God brought life! No infection or revision! Perhaps it’s a mental miracle that was granted to me, what grace that no complications arose.
In looking back on the 7 weeks in the hospital, those early prayers back when it was life or death for Anna. I requested prayers for “best case” outcome every time. It was humiliating to receive so many “no” answers in prayer. I spent so much time wanting to control the situation through prayer and writing because I was helpless as a father, unable to even hold Anna. But I had to do something. I based most of my prayer “agenda” on what the medical team was telling us. So much trauma, sadness, and disbelief informed my thinking back then. On occasion, God’s character made me dream and ask prayer for big things. It was such an impossible situation to endure and it seemed to keep going on and on. God carried us. Fernando Ortega’s Hymns of Worship CD ministered repeatedly to me like a gold mine to keep my thoughts fixed on Jesus. This verse spoke hope to me daily and we posted it above Anna’s NICU bed. “He will tend his flock like a shepherd; he will gather the lambs in his arms; he will carry them in his bosom, and gently lead those that are with young.” Isaiah 40:11. Anna’s bed had several verses over her by the time we left.
I never cried so hard and for so long in my entire life. I remember typing these updates in the carpeted hallways surrounding the waiting room to the Evanston North Shore NICU. In a ball on the floor with my tablet weeping, writing, polishing determined words of hoping in Jesus. The Lord met me as I conveyed each day’s events with a tender heart hoping that my faith would be an example to others for their trials, not just a dad begging for prayer. I remember this theme so distinctly, “Lord if this isn’t a mistake to You, equip me!”
The church gave us a collective hope and mercy for Anna’s life back when things were life or death. What support we received, in love, in prayer, meals and finance. Within the first few months Anna was a literal million-dollar baby. Now my baby steps of faith have become strides that God’s glory purposes as He gives Himself glory through Anna’s continued life. To this day, I am reminded by God’s Word that the grand miracle of total healing is assured in the Lord's blessed time and hands.
Praise God for:
-the people that check in with me and want to catch up to this day.
-Direction regarding Renee’s education. We have shaped a path to allow for continued homeschooling. Thank you for your encouragement.
-Direction received about a house church in light of not being able to attend our church weekly. Currently we go to our home church when we can. I have learned and read much about house or organic churches. We hope to start a small group centered around prayer and singing for the weekends I work with a communion meal.
-Anna’s “eye-gaze” talker. We continue to have moments where she is clearly communicating through the device as well as moments that make us scratch our heads. Lindsey has now programmed well over a hundred pages for Anna to navigate with about 8 icons on each page that speak for her. Pray for continued wisdom for programming Anna's eye gaze. To expand Anna's vocabulary. She can now choose the colors of her outfits that she wants to wear, and how to do her hair.
-We have Anna doing horseback therapy again every week. They even allow sibling rides for Renee and Victor, they get a slice of the farm life every Thursday afternoon.
Please Pray for:
-weight gain, a feeding strategy. After years of complex prayers regarding her conditions. Of late, its simply eating and bowel movements that have become the most needed prayer requests. Anna has gained 7 pounds since December. We need to get her closer to 75 pounds (another 7 pounds) by mid-summer. The problem is we are at maximum intestinal feeding capabilities. Her intestines don’t flex like the stomach does, Anna’s stomach isn’t used to being stretched without food making its way up her esophagus as reflux and possible aspiration. Pray for healing and the ability to take food into her stomach more. For these home blended feeds that we give into her stomach, that they would stay down as her stomach expands. I’m ready to crush up Cheetos and mix it in some Dr. Pepper. Lindsey promised me that is not the way to see Anna gain weight. Alas.
-a healing, or a resolution to Anna’s Urinary Track Infection (UTI). We are on her 6th UTI this winter. We have been doing homeopathic daily supplements in between doses of antibiotics. It seems like we are coming to a gun fight with a knife. Anna’s Urologist has ordered a day long test up at Aurora Children’s to measure the draining of her blatter. He has introduced to us the idea that Anna might need a full-time catheter or "straight cathing". Now that is something I would not want as her caretaker.
-Regular bowel movements. Cerebral Palsy scrambles the neurological messages from the brain to the muscles which is apparent in her legs and arms. This hyper or hypo tone extends to all her muscles (remember the eye surgery to fix the teeny muscles pulling her eyeballs in different directions). The muscles in her digestive track complicate her ability to push out a stool. Please pray for wisdom to know if a surgical procedure is needed to help make stools more regular.
-the right day nurse 2-3 days a week for Anna. Our current agency doesn’t seem to be able to provide that so we are starting the process with other companies.
I’m thankful for the mercy of fellow believers walking with us in selfless intercession for years.
.jpg)
