A Father's Heart

I replay that night in my head sometimes. The night two nurses knocked on our door in the middle of the night to tell us “Max isn’t doing well.” It was like a nightmare. They told us they had “every iron in the fire” and that they would let us know when we could see him. That night I learned what terror felt like. The terror of the thought of losing my son. The terror of not knowing what comes next. The terror of not being able to help Max. Abby and I were left in that cold hospital room pleading with God to give Max strength. Pleading that we would not hold him for the first and last time that night. In what felt like hours, we were finally allowed to come see Max. The doctors told us he had suffered a Pneumothorax, a collapsed lung, and had chest tubes inserted to remove the air on the outside of his lungs. We prayed over Max for strength and healing. I wasn’t ready to lose him. This might sound crazy or selfish, but we share a middle name. If he was gone, I would be reminded of him every day. My name would symbolize my grief.

That night was eternal. I never slept. Every footstep I heard in the hall kept me awake. A nurse came in to check Abby and I shot up asking if they were from the NICU and if Max was alive. Every time a shadow past the light under the door, I held my breath. Max made it through the night, but the damage had been done. His little body had been put through so much stress that it caused a Grade 3 Bilateral Brain Bleed. When the doctor’s told us Max’s condition, they told us that Cerebral Palsy was a strong possibility for Max. Abby and I cried to God, cried for Max, and cried for the unknown future he would have. I researched Cerebral Palsy and I wasn’t prepared for that possibility.

Max is a strong kid. Max is a funny kid. Max is a kid living with Cerebral Palsy. I never thought I would say that about my son. I never thought I would be the father of a disabled child, but I am. The realization, that I am a father to a disabled child didn’t come until one day at work. I am a high school teacher and I see students with disabilities every day but for some reason this day was different. I walked into the lunchroom to get a fork and I noticed a student sitting alone eating lunch. He had a walker. Just like Max’s. I see this particular student every day, but I felt like I truly saw him that day because I saw my son. I saw Max and my heart broke as a father. I thought of him sitting alone every day. I thought of him leaving class early and navigating hallways to make it to his next class. I then prayed that this would not be Max because I hope he would be seen from the beginning. That his brother and sister would sit with him. That he would have friends and peers that would sit and talk with him. Mostly, I prayed that Max would know that he belongs. Now when I see that student I say hello and ask how his day is going. I see that student now because I have a son that deserves to be seen.

I am reminded of Max’s strength every time I see his chest tube scars. They are a testament to everything he has overcome. He is a child living with Cerebral Palsy, but he is not defined by his disability. Max will be defined by his determination, how he treats others, and his relationship with the Lord. Nobody can define Max by his disability and think lesser of him because of it.

Or they will have to deal with his father.

-Ryan