This is a continuation of the last post, Music From a Broken Piano. Read the first part here: https://bglenney.com/2016/01/22/music-from-a-broken-piano/

We sat in our maroon Honda CRV and cried.  We had just found out that we were having a boy. I had always wanted a boy. I wanted a son to do father-son things with, like play soccer, watch sports, wrestle, and most importantly, make various noises together from all parts of the anatomy. I am also the last Glenney in our family, and the name must live on. We Glenneys are a proud race after all. But these tears we cried that afternoon were not happy tears.

We had sat in the doctor’s room after the ultrasound talking with the soon-to-be grandma about the news. What would we name him? His cousins would be so mad, they had wanted a little girl cousin. We would need lots of light blue toys and blankets for the nursery. The decorations for the upcoming baby shower could now be made. We sat and waited and talked about the future with smiles and brightness. The door opened and in walked our main doctor. She had a folder in her hand. She spoke the words that changed our lives, “There is something wrong with your baby”.

I arrived at Charleston around 11 pm. My wife and my son were airlifted by plane and arrived in Charleston at the hospital at around 12 pm. They poked, prodded, scanned, and x-rayed my son until around 2 am that first night. It had been five months since those fateful words had been uttered. Now we stood at the bedside of my son hundreds of miles away from everything familiar. The NICU serenading us with a symphony of beeps and dings.

I had assumed that we would know what was wrong with Brian within weeks of birth. Instead, we only knew that things were wrong but the “why” remained a mystery. We had been told that with the assortment of issues Brian was born with, he most likely had a genetic syndrome but all the tests so far had come back negative. There was hope that it was just a random sampling of fixable issues that just happened to all appear in our boy. Perhaps there was no underlying issue. I was positive there wouldn’t be. I was confident that baby Brian was just a complicated, but normal child. After all, although he was little, he looked normal to me. I found out looks can be deceiving. I also discovered so could your heart.

I remember going with Brian to the hospital to record a testimonial for a new program that had helped us navigate through the birth and beginning of care for Brian. It was called “Palliative Care,” and when we had initially been asked if we would like to consult with them after they had found all the issues with Brian during the pregnancy, I was instinctively hesitant. I mean, “Palliative Care” is for dying people and I was having none of that. Brian was not dying. Apparently though this program was also for complicated medical cases such as baby Brian. In the end, we ended up being one of the first cases for the new group and it was a blessing to have experts to lean on and advocate for you when you have no idea what is going on. They asked if we would come and help make a promo for the new group and we said, “Of course.”  The interviews were taped and went smoothly until the chaplain asked me his final question. It was almost as an afterthought and it caught me off guard. He asked, “What are your hopes and desires for Brian?” I immediately responded, “I hope he can be a normal boy. I hope he can grow up and get in trouble like a boy, get muddy, play sports. I just hope he can be a normal boy.”

I was uneasy about my answer the moment it left my lips. That afternoon and evening, I thought more and more about it and grew ashamed. By this time we had discovered that Brian had Rubinstein-Taybi Syndrome (RTS) and all that came with that diagnosis. How could my deepest desire be for something that Brian would never be? How deep was my love for my son if I was already disappointed with him? Of course, as a man, I didn’t dwell on any of this. Looking back, I wasn’t even truly aware of what was infecting my heart. I had been confident and hopeful that all would be fine with Brian until we got back the genetic testing that confirmed he had RTS. Even than I had held out hope. He doesn’t really look like a classic RTS child, I had reasoned, maybe they just got it wrong. Hope crushed quickly turns to despondence and nihilism. I just continued on. What else can you do? Brian had three to five doctor’s visit a week, someone had to take him. He was fed every couple of hours through a g-tube attached to his stomach, someone had to feed him and clean out the bag.  Baby Brian was here to stay, someone had to be his dad.

And the days turned over and over. There was a lot of joy, love and thankfulness for my son, but something deep within was broken. I remember sitting with some co-workers, reading a testimonial about how some insurance plans had helped during our son’s first couple of months, and completely breaking down. I just started sobbing uncontrollably and someone else had to finish for me. I remember sitting with a therapist and she asked if I loved my son and I said I loved him with all my heart and then I just started balling and couldn’t stop crying to finish the thought. There was no hope attached to the love for my son, only sadness. A fatalistic sadness that my son was never going to be normal. It was a love with an asterisk. I love my son, but…

What do you do when prayers are not answered the way you desire? What do you do when the God of miracles doesn’t do the miracle you want? I was so focused on what I wanted that I missed what I needed. I was so intent that God miraculously make Brian “normal,” that I was blind to the amazing miracle that God allowed Brian to even be born at all. I was so envious of what I didn’t have that I lost the wonder of the treasure I already possessed. It was like the millionaire who, when he was asked, “How much more money do you need?” responded, “One more dollar.” I had given up hope, because I had hoped in the wrong thing. My dreams were a vision from the world. Baby Brian was a vision from God’s dream. I had wanted stability, control, and normalcy. God wanted dependence, obedience, and trust. I wanted a son of which the world would be proud. God wanted a child that would serve his purpose. It is telling that on the night that God’s only son, Jesus Christ, would go willingly to the cross to die for the world’s sins, those that were with him were carrying swords, figuring this was the time he would lead the revolution and overthrow Rome here on earth. The disciples wanted a Messiah that the world would be proud of and on the very night Jesus was to die, they were willing to kill to make sure their vision came true. They saw death as failure. They saw Jesus as the worldly King. God knew Him as the Heavenly King. To God, death was the point, for it was the only way to a forgiven and free life. Much like the disciples, I had to come to grip with a fundamental question: do I fully and completely trust God?

I am constantly amazed by the story of Moses. One of the parts that is so heart-wrenching is his earliest years. His mother, Jochebed, hid Moses from birth until three months old because of an Egyptian decree to kill all male Jewish babies. At three months old Jochebed took her little precious baby boy and loaded him into a basket coated in tar and let him go down the Nile. What thoughts she must have had, what fears and sorrows, what questions. Imagine placing your three month old in a raft in the water and just…letting go. Surely that can’t be God’s plan, to send my son down a river to his certain death? Jochebed had to face the same question I had to face, do I believe that God loves my son even more than I love my son? Can I let go and trust God?

And there it was. The question in my heart that needed to be resolved. Was God both good and trustworthy? Was my Son’s RTS an unfortunate mistake or a purposeful blessing? Was my son born incomplete and damaged or perfect and special? Was he a gift from God or a random misconfiguration of DNA and RNA? Am I in control or God? It seems so simple when you boil it down. Ministers and good Christians alike will just tell you to have faith and believe. That obviously God is in control and he loves you. That there are no accidents. I guess it is easy to do when your life is cruising along in the HOV lane with no traffic. Observers of an accident always have a different vantage point than actual victims. When you are in the crumpled car, injured and bleeding, faith in the good plans of God are harder to imagine. Just ask Job, who in the midst of his trials cried out, “Why did I not die at birth, come out from the womb and expire…I am not at ease, nor am I quiet; I have no rest, but trouble comes.”[1] I wrestled with this for almost two years of Brian’s life. I didn’t even realize how deeply it affected me, like an internal cancer that grows unchecked and undetected. And so, I had to let go. I had to choose to believe God. I had to send Brian down the river in God’s hands.

And then, something amazing happened. I got Brian back, and not a “normal” Brian infected with RTS, but a perfect Brian blessed by God. I got a son that is more precious to me every day. I got a child of which I am infinitely proud and for which I am supremely joyful. I stopped viewing Brian’s development as delayed but as triumphant. With each new day, I saw the ways that he grew not as a reminder of how he was “behind” others, but as an achievement to celebrate. I finally saw my little Brian as complete and perfect. I finally saw Brian through the eyes of my faithful and true Savior. I finally saw my miracle, I just didn’t realize that it was my heart that needed the miracle.

Abide with me; fast falls the eventide;
the darkness deepens; Lord, with me abide.
When other helpers fail and comforts flee;
Help of the helpless, O abide with me.

 Swift to its close ebbs out life’s little day;
earth’s joys grow dim; its glories pass away;
change and decay in all around I see;
O thou who changest not, abide with me.

 -Abide With Me

[1] Job 3:11,26 (ESV)