by Patrick Rhodes
Being a father means protecting your family and being Superman, or at least that’s what I thought until the spring of 2011.
Sooner or later, all parents find out we can’t fix everything that happens to our children. For most of us , the realization that we aren’t Superman comes slowly and the next thing you know, your child is asking questions or dealing with hurts for which you have no answer. In that moment, no matter how much you want to take the hurt away, you realize that you are powerless to help, and that’s when you really begin to love.
You pour your heart into prayer and rage and hold your child close and wonder why things have to be this way; that’s when you understand the undeniable truth — you aren’t Superman. You're just a father who loves a child going through something awful that sucks beyond words. You question everything you believe about God, the universe, and yourself. In that moment of sheer brokenness, you know that all you have to give is your love and encouragement. You pick yourself up and with the help of your faith in God, family, and friends, you begin to march alongside your child. You love them and protect them as best you can, even though you know that you are not Superman.
In March of 2011, my wife Ashley and I were expecting our son, Jack. Ashley was born with Crouzon Syndrome, and as a result, we knew there was a fifty-fifty chance Jack would have it. We feared having a child with Crouzon. In fact, we feared the syndrome so much we were planning to adopt when we found out Ashley was pregnant. In order to give Jack the best care possible, we decided to have amniocenteses done, which would tell us if he had Crouzon. It was against this background that my world, my control, my belief that I could handle it all, began to crumble.
The results of the amniocenteses came back. I watched Ashley's stricken face as she talked to the genetic clinic. While I could not hear what was being said, I knew what the look on her face meant: Jack had tested positive for Crouzon Syndrome. Our fears had come true.
After hearing the news about Jack, I remember a sense of rage welling up inside me; rage that I had to see my wife in such pain (Ashley had a tremendous sense of guilt over passing the syndrome to Jack), rage that I was helpless to take away her pain, and rage that Jack would have to endure countless surgeries. Most of all, I felt rage at my powerlessness: me the father, the provider, the protector could do nothing to end my family's pain. Everything was out of my hands.
People would say trust in God —He will make all things right in his plan. That reminder did nothing to help me. It only made my anger stronger and more consuming. Every time some well-meaning person advised me to trust in God, I was reminded of how out of control I was in this situation, and that God allowed this to happen. I became so angry I refused to pray. I told Ashley that I didn’t believe in God. There is no way a just and kind creator would do this to me!
As Ashley’s belly grew, so too did my anger and frustration. We did all the normal things like baby showers, OBGYN appointments, and nursery decorations. There were some happy moments such as the first time I felt Jack kick, and in some small ways my anger abated, but mostly I remember being scared and afraid.
On Saturday morning , July 23, 2011, Jack was born. I took one look at him and fell hopelessly and deeply in love. He was so small, a little over 5lbs, and he was having trouble breathing. Immediately the doctors took him from us. He had to go to the NICU. The rage began to swell. I was robbed of the moment all fathers dream about, holding my child with the woman I love. Instead, I was rushed with my son to the NICU where I was allowed to kiss and hold him before the nurses put him in an incubator.
In that moment all of my control was gone. I realized how completely and totally powerless I was to help Jack. Outwardly I was calm, but my soul screamed with rage, anger, resentment, frustration, and pain! My son, less than an hour old, was not dependent on me for life, but doctors, nurses, and machines; me the father, the protector, had been replaced already. Less than a day into my son’s life, I was rendered superfluous. My anger grew deeper still.
In Psalm 23 David writes, “Even though I walk through the valley of the shadow of death, I will fear no evil.” I don’t know what David’s valley of death looked like, but for me it will always and forever make me think of the NICU. It was dark, machines were everywhere from the floor to the ceiling, and I was surrounded by babies like my Jack, fighting for their lives. My anger started morphing into fear. For the first time, I realized we might not bring our baby home. If I had started out my journey into fatherhood as Superman, a hero who could do it all, I was now the Incredible Hulk, a giant green rage monster.
Six weeks would go by in the NICU and Jack would code twice. The first time it happened I was back at work in Myrtle Beach, while Ashley stayed with Jack at the hospital. She called and told me that she had walked back from lunch only to find the doctors and nurses working on Jack to get his heart started and his breathing back to normal. To this day, I carry a tremendous amount of guilt about not being there. I know that my presence would not have made a difference, but I still regret my absence. The next time Jack coded, Ashley and I had just gotten back to the Ronald McDonald House when the phone rang. Very calmly a nurse informed us that Jack was fine, but that he had coded and his heart had stopped again. Immediately, Ashley and I went back to the hospital and held our son and watched him breath. Ashley thanked God for sparing Jack, while I wallowed in my helplessness. In my mind there was no way a God of pure love would let an innocent child go through this. In my anger and frustration, and in spite of my rejection of God (my hypocrisy it seems knows no bounds), I went to the small hospital chapel and prayed for Jack.
One of our greatest fears going into Jack’s birth was that he would require a tracheostomy (trach). Ashley prayed and prayed that we could bring our baby home without one, but once again, this God of love and mercy, who gives whatever you ask for, said no. He would not answer my wife’s prayers. Jack’s airways were too small for him to breathe on his own, and he would need a trach to come home. Knowing then, that we had no choice, that I had no power, and that I had no control, I turned my child over to a surgeon for the first time. He wasn’t even a month old yet and he was having surgery. I mourned for him, not a mourning for the loss of life, but instead, I grieved for his loss of normality. From this moment on, Jack would be that kid, the different one, the one that stood out, the one that didn’t quite fit the mold.
I was beginning to become an expert at anger. For the most part, I turned it inside, however when an occasion arose where I could release it on the doctors, I never hesitated. Those weeks in Charleston were the hardest in my life. Seeing two people I love so much suffer, Jack physically trying to stay alive, and Ashley dealing with the emotional pain that comes from being a mother of a child with severe medical needs, was ripping my heart out. The anger was going away but numbness was replacing it. It was becoming hard for me to truly feel anything. On top of dealing with all the emotions that come flooding at you in a situation like this, I was trying to figure out how to be father to child with a trach, who needed more medical care than I knew how to give. At this moment, I was more confused, more lost than I have ever been before, or since.
After six weeks we took our baby home to face the world. Still scared and angry, we drove home with Jack. Neither of us knew what to expect. Jack needed surgery to release the sutures in his skull, all but one of them were fused together, but as of right now, he was still too small for surgery. We would take him home, love him, watch him grow, and hope that when the sun came up the next morning, our son was still alive.
I was still angry, still confused, and still helpless but, at least we were home and could hold and rock Jack in our living room. While I had stopped praying (I saw little utility in it; after all God hadn’t answered any of our prayers yet I thought), I still spoke with Him. Mostly in quiet rage and unspoken anger I questioned Him: Why had He done this to my family? Why couldn't we be the perfect normal family? Why had he broken us so completely?
For the first few months, there were times I felt more like Jack’s nurse than his father. Our nightly routine involved all the normal things like bathing, feeding, and loving him; however in addition to that, there was another component—the medical component. Every night we had to clean Jack’s stoma (the area around his trach) and change his trach ties. After that, all of his medical equipment, (heart monitors, breathing tubes, and other devices), had to be hooked up. In fact, Jack needed so much nightly medical attention that we moved his crib into our bedroom for the first year and half.
During that first year, something else happened, healing started.
Physically Jack began to stabilize and slowly I, with the help of some special people, started the process of recovering from my emotional and spiritual wounds. While he was in Charleston, Jack had at had several surgeries. However, in March 2012 we were preparing for his first major surgery. Jack needed a cranial vault expansion. A week before his surgery, one of Ashley’s coworkers, whose husband is an Anglican priest, approached her about having Jack baptized. While I was still very angry at God and wanted no part in the Church, I knew how much this meant to Ashley. So I said those two little words all husbands learn to say when they really have no interest in doing something, “Yes dear," and we had Jack baptized in a private service with a few of our closest friends.
During the service, the love and compassion that Father Ron showed Jack, left a slight crack in the hard stone wall I had built around my heart. I didn’t know it then, but in few days he would offer some words of guidance that would bring everything I was dealing with into focus and ultimately, would help me move past my emotional wounds. To this day, I am eternally grateful that God placed Ron Greiser in our lives.
The Saturday after Jack’s surgery Father Ron came to see us in the hospital. In the waiting room we sat and talked, while our wives visited my little man. We talked about sports, what it means to be a father, and life in general. Eventually, our wives came out of the ICU and it was our turn to go in. Looking down at Jack, Father Ron asked me how I was doing. I still remember our conversation to this day. I told him I was pissed. Pissed at God, at life, and this sucks: Watching your child go through medical procedure after medical procedure. His words were, “It's okay to be mad at God, in fact you can be mad at him and still love. After all you get mad at Ashley, don’t you? But you still love her right?” His next words explained perfectly to me exactly what I was dealing with, yet somehow didn’t quite understand. “You're grieving," he told me, "not the physical loss of your child, but, of the dreams you had for him and everything you're dealing with is part of that process.” Until that moment I struggled not just with my feelings but also, with why I had them—It never occurred to me think that I was grieving.
Jack quickly recovered from his surgery and we took him home again. I wish I could say that from the moment Father Ron and I had our conversation that I too was made whole, but that would be a lie. However, little by little, day by day, I began to deal with, and face my anger. I understood where it was coming from and how to move past it. In my anger, all I could see were things Jack would never be able to do. But now I was beginning to see that, while my life with Jack was going to be different than I had planned, there were still going to be some pretty amazing things in our lives together.
As a parent of a child with a craniofacial difference, one of the things you fear most is how people will treat your child. Because of everything Father Ron had done for us, one evening Ashley suggested that we should take Jack to Ron’s church and let him see how Jack was doing. “Yes dear,” came out of my mouth again. While, I wasn’t quite as confused and angry, I wasn’t quite ready for church. I held Jack all through the sermon.
Afterwards a young girl, just in elementary school, came over, and asked to hold Jack, the little baby that the congregation had heard so much about. The love, kindness, and genuine affection with which she held Jack moved me in ways I can’t explain; to see someone else love my child, who looks so different, gave me hope.
September 11, 2017
Jack is five now, and as the saying goes, he is all boy; a bundle of energy, excitement, and joy. My son is one of the happiest children I know. He loves to read, school, and his mommy and daddy (Although now, much to my chagrin, he is calling me Dad more and Daddy less). He loves Legos, Star Wars, swimming (even with the trach), and more importantly he loves Jesus.
I got over my anger with God and we joined Father Ron’s church. Every day Ashley and I see the unique joys of being Jack’s parents. While I wish I could say that after the first year of his life everything has been perfect, I can’t. We have had ups and downs, setbacks, and joys. When he was two, we found out he had a dead spot on his brain from pressing against his skull; at that time the doctors couldn’t tell us if Jack would function intellectually at a normal level or not— this was a major setback. At three, we had him tested for cognitive development and he was functioning at the level expected of a six-year-old—major joy!
Being a parent is hard, there is no manual for it. Being a parent of a child with medical needs is even harder. But I have come to understand that we appreciate the things we struggle with the most, or work the hardest for, more than what comes easiest to us. Maybe that is why I love Jack so much. Seeing his struggle has really and truly made me appreciate him. I also know now that when we are faced with great challenges, we need support and people who know what we are going through. There is a gamut of emotions that parents face when they find out that their child is “sick,” but those emotions are normal. So, if you are struggling to understand why this has happened to your child, know that you are not alone, there are people who have walked in your shoes, and there are people who care about you. Talk to them. Don’t try to be Superman and handle it all yourself.
I still don’t know why God chose not to answer our prayers and spare Jack from Crouzon Syndrome. Maybe it’s because one day, as he walks off the 18th green at Augusta National, after sinking a putt to win the Masters, Jim Nance will asks how he dealt with the pressure. Jack will smile and say, "This wasn’t pressure, try learning to swim with a trach—that’s pressure!" Or, perhaps one day when Jack is President of the United States, a reporter will ask him how he handles the stress of the job and Jack will say, "This isn’t stressful, try wearing the RED System." Or maybe just maybe when Jack is a dad and his child says, "Dad, I don’t know how to go on." Jack will smile with love and say, "Let me give you some advice." I don’t know where I’ll be at that moment, but I know will be proud of him!