I have always loved the month of April, and for lots of good reasons actually. First off, it is my birthday month, the beginning of spring—or fake spring as we Chicagoans like to say, and the month when two very special holidays usually take place. One is Easter of course, and the other is Passover. If your spouse was raised Jewish as mine was, you probably wind up celebrating Passover in some form. Many couples who identify themselves as “interfaith” celebrate dual holidays, since it just comes down to spending time with each side of the family, but that’s not the case with us. We genuinely love and get excited for each of these celebrations, due to the fact that my wife has become a Christian and accepted Jesus or Yeshua as the Jewish Messiah, but I have also very much embraced her Jewish roots. I have come to appreciate Judaism as the foundation of Christian faith; my understanding of Jesus and His message has become much more enlightened through a deeper understanding of His own background. Every year, we attend a Passover Seder hosted by a Messianic Jewish congregation. It is such wonderful to celebrate the holiday with Jewish believers who embrace Jesus as Messiah.
This year, April played out quite differently for us. This is evidenced by the fact that I am writing this blog from the parent lounge on the 10th floor of our local pediatric hospital, where my son is recovering from brain surgery for an issue we just recently discovered. This April, we did not celebrate Easter and Passover in the usual ways: no church on Easter Sunday, no Passover seder. I did get a chance to celebrate my birthday, but it was a shortened celebration at best, as my son’s surgery loomed several days later.
How did we get here?
It all began several weeks ago when my son came home from his ABA therapy. After vomiting in the car, he suffered what was essentially a grand mal seizure right at home. We called the paramedics and were transported to our local emergency room. Later doctors discovered that my son had a “chiari malformation” on the back of his cerebellum. While the chiari malformation was not technically responsible for the seizure in the car or the two other he had on the way to the hospital, it nonetheless was a problem causing pressure on his brain. The malformation was also potentially responsible for a variety of other conditions that we had previously attached to his autism, such as poor motor skills, vision and digestive issues, among other things. After four days in the hospital, where my son was subjected to a variety of scans and evaluations, there was no clear explanation as to what caused the seizures. Both a neurologist and a neurosurgeon informed us that our son definitely had a chiari malformation in his brain, it may be causing some issues, and we had to address it promptly.
We went home and got back to normal as best we could, and prepared for our next steps appointment a couple weeks later. My wife and I spent the entire time between the hospital stay and the next appointment in heavy prayer and discussion over this choice and what it could mean for our son. We were struck by the fact that not only had we not known about our son having this condition, we did not even know what a chiari was before this.
A multitude of friends and family began to reach out to us via phone, text and social media, all of them supporting us with their thoughts and prayers, but amazingly many of them shared their own experiences with chiari. Some of them recommended both the hospital we visited as well as the specific neurologist and surgeon we were meeting ; some of their children had been operated on by this team, with incredible results. The more we reflected on all of this new information and the shocking events that brought us to this place, we began to consider that we might be experiencing a miracle discovery for our son. As scary as the seizures were, we would never have discovered this malformation without them. Thanks to my wife’s quick decision-making, we were moved to the right hospital. Once friends began pouring in information about the doctors and specialists, we knew who to ask for and insisted on seeing those professional only, even when others were available. Thanks to all of these events lining up exactly the way that they needed to, we were at this place, preparing to possibly correct a significant issue that our son had had for years, something only God could orchestrate.
Getting Ready for Surgery
When we finally made it to the appointment with the neurology team, they shoed us the results of the scans, confirming his condition and showing us the severity of his chiari. We agreed to do the surgery. The surgeon did not pressure us to do anything immediately; he even suggested getting a second opinion if we felt that was necessary. But we knew our son could be in an extreme amount of discomfort due to the pressure now on his brain. At the end of our appointment, we were given a choice of dates. The first date was relatively soon: April 15th, only a couple of weeks away. It seemed so soon for surgery so extreme, right after the ordeal of our son’s seizures. My wife and I looked at the medical team and the other family members present, and all agreed that sooner was better. The timing was actually very good, since I would be on spring break. The procedure would take a couple of hours, then a three-day hospital stay, then several weeks of recovery at home.
I spent the next couple of weeks with a variety of thoughts and feelings churning through my head. We faced a future that was quite uncertain; after all, this was going to be brain surgery. Brain surgery. He would have his skull opened and possibly some of the top vertebrae removed to make space for his brain. What would he be like after that? Would he actually be healed from some of his other conditions, or would there be little to no change? Would he somehow be different, hopefully in a positive way? Or would something go missing instead, some part of his personality that we had come to love that would just be gone?
I truly became sad, not because my son might be healed, but that he would have to experience such an extreme procedure. Even though we would speak to him about it, would our son really understand what was about to happen to him? Would he understand that this time when he woke up in the hospital he should feel better, but he would also be in a level of pain and discomfort he had not had before? The doctors insisted he should recover easily, but I kept feeling myself in his body, the fear and uncertainty that he would feel the day of the surgery. I just wished I could be going in there instead of him.
We got to the hospital bright and early at 5:30am. We had packed overnight bags for a couple of days, and had all of my son’s requisite comfort items: ipad, blankets, stuffed animals. We got registered and waited a few minutes before being taken down to the pre-op area. I could sense my son’s anxiety and fear as he kept shaking. I held him tight as we waited for the nursing staff to get him prepped. Eventually we were able to get him changed, onto the hospital bed and soothe him; a little oral anesthetic helped to get him calm. By the time he was wheeled away from us, he was sitting and relaxed; his comforting bedtime music played on his ipad. He clutched his teddy bear tight as he rode away. My heart was pulled right along with him.
My wife and I walked to the waiting area, and were given a lovely semi-private sitting room where we instructed to wait for the phone to ring on a nearby table. My wife wanted us to spend time in prayer, but I needed to go to the chapel and be alone with God. I just kept thinking about my original question: How did we get here?
My wife probed me to share, and with tears welling up, I began to tell her all of what I had been going through these last few days and weeks. We shared many of these were feelings, but I also went back to how this April felt different, how there would be no Easter Sunday service, no Passover seder, and my birthday was somewhat set aside. As much as I tried to plug into the miracle of our son’s healing, the stress of the last episode in the hospital and now the uncertainty and fear of this procedure had gotten to me. I was weak where I thought I could be strong.
But then I shared something else that I had been meditating on this whole time, something that God must have put in my head to help counter everything else, and it was “The High Priestly Prayer” from the Gospel of John. This is the prayer Jesus prayed in the garden right before his arrest, the prayer He prayed to help empower His disciples as He was leaving them, the prayer in which He tells the Father, “The glory that You have given to me I have given to them…” (John 17:22 ESV). I considered the sacrifice of our Messiah at this time, the fact that He not only surrendered His physical body so that we might be saved, but He also offered up His glory, His spiritual being for us as well. In that sense, His sacrifice becomes all the more meaningful, as He literally poured out everything He had, physically, emotionally and spiritually for His children. And in the same way, I shared with my wife how I prayed a similar prayer over our son, that I would surrender everything, every grace, blessing and favor given to me by God so that my son might be healed. The more I spoke it out, the more it hit me that this is exactly what we celebrate at Easter, a miracle of sacrifice so profound that we can only scratch the surface of how deep it goes. We Christians love to say this time of year, “Sunday is coming,” and I knew I had to put my hope in that same God who loved me enough to give everything for me, that He would do the same again for my child, and I would learn a valuable lesson in the process. Sunday was coming, and this year we would quite possibly have an Easter miracle just a few days early.
As I write the ending to this piece, I continue to reflect on the miracles of this April, regardless of how different this one turned out: my son came out of the surgery and is recovering nicely, albeit slowly. We do not know how much of a change we’ll see in him, but we already notice that he has improved in small ways with some things he has struggled with, which makes us happy. I mentioned that we celebrate both Passover and Easter, and one of the parts of the seder that I look most forward to each year is the singing of a song called “dayanu,” which essentially translates to “it would have been enough.” It would have been enough had God sent one plague to convince Pharaoh to let the Hebrew slaves go, but He did more. God continued to send plagues and signs to convince Pharaoh, and then he set the slaves free. That would have been enough, but then God gave them the promised land. This year, I could equally say the same about me and my family, as it would have been enough if we had found our son’s condition, but He led the right specialists to us. It would have been enough if God got our son to surgery, but now He may heal him in ways we couldn’t believe. This year, I won’t get a chance to sing the seder song and bang on a table in the usual raucous fashion with a room full of people, but in my heart I’m bursting with celebration every day.
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