I found this today, something I wrote almost exactly two years ago. I sent it in an email to just a few close people, feeling intensely grateful for them and this life. While my world is so different, it felt meaningful to come across this seemly by accident. As Pope Saint John Paul II has said, “there are no coincidences, only parts of God’s plan not yet fully understood”.

Time, 10.19.2020

There are times in my life when messages and signs converge, often with some poignant realization or long overdue acceptance on my part. Over the last few weeks I have seen friends and family share pictures on social media, going on trips or visiting places with their children or family. The Fall, even across the country and especially due to months of indoor isolation, has created gorgeous backdrops for pumpkin patches, orchards and even wineries. The breeze, blue skies and cornucopia of yellow, red and orange leaves alongside cider and smoke from fire pits have allowed me to see, smell and even taste the season, vicariously through others. This is one of the great gifts of social media. But it has also resulted in a sense of missing out. That I should be out more, spending real time with Jen and the kids. In the real world. Doing real things.

The last two weekends, Jen has planned events for us at farms and orchards. Exactly what I had been yearning for. I was alarmed several weeks ago when I heard myself tell her that I get so busy and stressed at work, I really don’t want to do anything or think about anything when I’m at home. I was alarmed and saddened. To realize that my life is becoming, what it was only supposed to be waiting for. Until the summer. Until vacation. Until the weekend. Until I get home. That my life was dripping through my fingers as I thought, but did not really do what I wanted my life, our lives, to be about.

My late teacher, Pamana Tuhon Sayoc had told us once that, “because we cannot get it back, time is our most valuable commodity.” He explained that while we can lose and get back things like money, or even health, time is something we can never get back. So, he said that we should be stingy with our time. If it is our most precious thing, we should not spend it carelessly with people we don’t want to spend it on. And we should be intentional to spend it most with those that we love. This morning, as I listened to mass in the shower, Fr. Rich said in his homily an almost identical sentiment. He said, “time is our most valuable asset”, and went on to explain word by word what I had heard years before. That is what The Lord had said in today’s Gospel. Because we never know when our lives might be demanded from us. We should live in the here and now, rather than planning to start living at some point in the future.

On the drive in, I chose to listen to Fr. Mike Schmitz and in his homily from last weekend, he referenced Rubin “Hurricane” Carter. And that after decades of being wrongfully imprisoned he decided not to sue, or seek damages or compensation from the time he was incarcerated. Apparently he said that although he was behind bars, he chose to live as a free man. And that if he sought anything from anyone, it would be an admittance that something had been taken from him. But he did not see it that way. Though in prison, he believed he became the man he wanted to become. Five years ago we went on pilgrimage to Lourdes where I met and spent quite some time with another father of a child with special needs. In a very unexpected moment, I was surprised to hear him say that his biggest regret was not suing sooner. Since that day I have been trying to reconcile that with my own decision. Jennifer and I haven’t sued. We still have an opportunity, although that window is closing. Should we have? Were there mistakes made? Should we still?

I don’t know when but at some point, God’s Grace allowed us to see William as he is. A beautiful gift and blessing, rather than a damaged imperfection. Listening to Fr. Mike’s voice this morning immediately brought me to tears, as he spoke a great truth that I had never been able to put the words to with our baby boy. I have struggled over the last sixteen years to define my thoughts and emotions with our life with William. There isn’t a day that I don’t remember falling to my knees, seeing his baptism behind flimsy partitions, or weeping with Jennifer in our room. But there isn’t a day that I don’t think of the first time I really spent time with him, just sitting on our futon for hours getting to know him. The trips we took, walking around New York City. The dark room sleeping next to him for sleep studies at Kennedy Krieger, or at his bedside last year in the PICU at Maryland.

There is a scene in the movie Courageous that I was just recounting to a colleague, wherein a man put on a fancy suit to attend a special ceremony. As he looks at himself in the mirror his wife is there at his side. And it is here where even now as I write this I do get choked up. He says, “I feel like a rich man.” She answers with, “You are a rich man. You have a strong faith, children that love you… a wife that adores you.” CS Lewis wrote that, “God whispers to us in our pleasures, speaks in our consciences, but shouts in our pains.” There are so many instances, not just for me but for any of us that we look up at the sky and pray for an answer. We wish for some guidance, some direction. We hope to hear something back. But every so often I do. When messages and signs converge, to some poignant realization, long overdue.

My life did in fact become what I was waiting for. It is a life of time spent with my loved ones, making memories in time that I can never get, nor want to give back. It is a life spent intentionally with shoe that I love. It is a life that became what I had always dreamed of becoming, full of sadness but also full of joy. Rich in faith, children and my wife. Full of God’s whisper, word and voice.

The tears just keep pouring out. I’m standing here at my desk, with my office door closed, trying to be as quiet as I can.

I saw Dr. Kate this morning in the elevator. I have always liked Dr. Kate and had a good relationship with her, especially as the NICU & Peds Manager. She asked how we (our family) are doing, and I smiled and said fine and thank you. I was starting to tell her how much I appreciated her sympathy, and remembered that I had texted her the days before you passed away that morning. Maybe even the day before. I was so worried, and I didn’t want to bring you in anywhere. I thought the Urgent Cares would not know what to do, and feel you were out of their league. I didn’t want to bring you to an ED or even Peds ED because of the same. Every time in the past, they had always gotten a little freaked out because whatever was going on. Dr. Utzurrum was always understanding, but she retired and I wasn’t sure if she would just say to go to the ED. So I texted Dr. Kate.

I had remembered how some people got medications or antibodies, and even Dr. Akkad had mentioned a medication to me if I didn’t feel better. But when I looked it up it was only authorized for patients over 18 years of age. So really I was kind of phishing to see if maybe Dr. Kate had any lead ins for a way for you to get it. If only you were just a few weeks older. She was very helpful, she had a few thoughts and suggestions and even followed up with what she found. Ultimately, I didn’t want to risk standing in line for a long time at the Convention Center for something that we might not even be eligible for. Plus, you seemed OK. Just sleeping soundly.

I didn’t remember all that at the moment, in the elevator. But I felt that same feeling I felt that day before you passed. Worried, not really panicking but concerned. And in that flash of time, it was like I was there. I could feel it again. So there in the elevator, and stepping off with her at her floor I cried but reassured her I was OK. I explained it happens every day, and that I get emotional but not embarrassed about it. She was crying too, and I felt sorry that she would start her day that way.

When I got into the office I closed the door. There is a new girl at the front desk, just outside of my office. I didn’t want her to worry, I’m pretty sure she wouldn’t even know. It is her third day at Mercy. And as I sipped on my coffee and put jelly on my biscuit I stood here weeping.

It reminded me of when you were in the NICU. There were two times actually. One was my first day back at work at LMU. Through all your weeks in the NICU, the nurses always assured us that when I went back to work, if I was worried or wanted to know anything to just call. And I had seen nurses answer phone calls all the time. So my first day back to work, I wanted to do the same. I was nervous, but make the call. Wanda, one of your nurses back then answered. I’m not even sure how much I introduced myself or how much she told me, but she suddenly cut me off and said “I’m sorry I have to go, your baby is seizing.” Then click, and hung up. I stood there, in that office and broke into tears. I remember I was crying so much and so hard I didn’t want to call Rosie our receptionist, so I called one of the other counselors, Steave. I told him I was crying and couldn’t come out, and asked if he could tell Rosie to cancel my appointments that day. Another time, was during mass. Even then, I attended noon mass whenever I could. I would pray for you, and when they priest would ask if there were any intentions I would simply say aloud “for William”. Everyone would pray, and one day one of the older ladies from the community that went to mass there, stopped me at the end of mass to ask about “William” since we pray for you all the time. As I told her you were small, and early, and in the NICU I started to weep. Hard actually. And I couldn’t stop. She sat for a while to try and console me and keep me company but after however long she left. The priest stayed too, I remember he was young, and new. I think he was uncomfortable but he stayed for a while. Ultimately everyone left and I was in that chapel weeping by myself. I didn’t want to walk back to my office, because the thought of crossing a college campus, even through a building in that state, seeing students all around wasn’t something I wanted to do.

In that book by Levi Lusko, he references St. Paul’s letter to Timothy, and the “sorrows upon sorrows”. Lusko writes about the original Greek nautical term, about waves crashing on a beach. I’ve tried to find the real term, but it may be old (Ancient) Greek, or I just written in Greek and I can’t read it. But I feel that. Sorrows upon sorrows. Some translations and commentaries say sorrows on top of sorrows, or unending waves on top of waves. I think that is right, that is how I feel.

So here I am again, 18 years later. There is a familiarity in it, like I’ve been here before. But when you were a baby you felt far away, so small and so far from my office when you were in the NICU. Now I feel you here with me. I just miss you still. Tomorrow will be 3 months since that morning. It seems both far away and near. I love you very much, and I miss you so much.

Love,

Dad

For a few weeks now, since you passed, Sr. Carole has been encouraging me to read the Gospel accounts, the stories around Jesus’ resurrection. I tried a little bit, but I didn’t put forth a lot of effort.

Like most mornings, maybe every morning, you were the first thing I thought of. In the dark, I missed listening for you. Your snores or snorts, your coughs or any sounds I might hear from our room above yours. I went downstairs and leaned against your bed. I put my face in your stroller pillow, then into your Baby Yoda pillow. Smelling for you. I remembered the smell of your hair, both the last time I kissed you in the ED, and the last time I kissed you in your casket. I thought about your smell, and all the ways I used to give you a bath. When you were a baby, I would hold you in the shower. When you got older I used your bath chair. During COVID I would sit in the bathtub with you, two big boys in that small tub. And in our new house I sat you in your new shower chair. I really enjoyed it. Those were our times. I miss it so much. After you were clean I would smell your hair, and kiss your face. And I loved holding your clean, scrubbed, dry hands. Ever since you were a baby I held your hand. First your finger, then your hand. It didn’t matter if you were in bed, in your wheelchair during mass, or sitting next to you on the couch. I just really miss holding your hand in mine. I forced myself to go to the gym to try and do something else, other than get lost in my own memories, in my imaginations.

After lifting, it was still dark but the sky was starting to light up. I visited you at the cemetery. I told you about everything I was thinking of. I told you I missed you, and said I hoped you had a nice day. I knew that while your ashes are there, that you are free to go and be wherever. But it was comforting to say that to you, just like I said I love you and am always proud of you. During your school days, I would always wonder what you were up to. In your wheelchair, on adventures in the class or during your fieldtrips.

Today, as the sun came out it became a gorgeous day. Walking up to get lunch, I was so struck as to how nice it was. The sun was out but not hot. A nice cool breeze gusted in the shade of the buildings. I thought that as beautiful as a day it is, I don’t want it. I don’t want to live in this life. This isn’t the life I want, it’s not mine. I want to go back, I want you back. After I ate, as I started to walk back down the street to work, I saw a man, maybe homeless pass by in a motorized wheelchair. I didn’t pay much attention. And as I waited on the corner I heard a cry out, and he had fallen. He thought there was a ramp in the curb, and he went off the curb. That chair stopped and he fell completely out. His face and head went right into a puddle on the road, on Charles Street. I put my back down and went over. I held his hand and arm and in a moment, recognized the  juxtaposition. His hand instead of yours. He was dirty, both from falling and from however else. I started to pull him up by his arm but he said he couldn’t stand. So I pulled his wheelchair closer. A young kid came over, he helped with the wheelchair and together we lifted this guy up. I asked him his name, he said “Joe”. His brow was bleeding from where he faceplanted into the puddle. He didn’t want us to call anyone, he just wanted to get going. But he thanked us. I still have mud and dirt on my sleeves.

Continuing my walk back down the hill, I couldn’t help but think they are connected. My missing you, and me being there when Joe fell down. I think eventually, I will get used to this. And maybe I will stop wishing I wasn’t here, in this life. And maybe it was your hand that I held, after all.

As soon as I got back here, to my office, I wrote this and then felt compelled to look up the story of Jesus appearing to Mary. The stories were always so puzzling, why didn’t anyone recognize Jesus? Why did he take those forms of others?

Jesus Appears to Mary Magdalene

11 But Mary stood weeping outside the tomb. As she wept, she bent over to look[a] into the tomb; 12 and she saw two angels in white, sitting where the body of Jesus had been lying, one at the head and the other at the feet. 13 They said to her, “Woman, why are you weeping?” She said to them, “They have taken away my Lord, and I do not know where they have laid him.” 14 When she had said this, she turned around and saw Jesus standing there, but she did not know that it was Jesus. 15 Jesus said to her, “Woman, why are you weeping? Whom are you looking for?” Supposing him to be the gardener, she said to him, “Sir, if you have carried him away, tell me where you have laid him, and I will take him away.” 16 Jesus said to her, “Mary!” She turned and said to him in Hebrew,[b] “Rabbouni!” (which means Teacher). 17 Jesus said to her, “Do not hold on to me, because I have not yet ascended to the Father. But go to my brothers and say to them, ‘I am ascending to my Father and your Father, to my God and your God.’” 18 Mary Magdalene went and announced to the disciples, “I have seen the Lord”; and she told them that he had said these things to her.

You taught me my whole life, William. Thank you for staying with me, being patient with me. I miss you.

It’s really hard for Mom today. I can picture her, sitting in the car with tears streaking down her face. Today is the first day ever, where one of us did not take you to the bus, or to school. I remember when you weren’t even two years old, and your Occupational Therapist Amy said we need to start thinking about a wheelchair, because you’d be starting school soon and you would need the wheelchair for the bus. When I asked, in disbelief why so early, she told me that special needs kids like you started school when they are three! And to get to school you’d ride the bus, and you’d need a wheelchair. I remember being so scared. Watching your little body in that chair, being lifted up by your bus. I followed you in the car that day, and for many days. Actually, I also stayed at school with you and sat in your class. For many weeks! I was so worried to leave you.

But slowly we got used to it. It helped that Miss Amalia stayed with you every day. And those bright mornings in Claremont soon became sunny, or cloudy, or rainy or snowy days in Hunt Valley. We would be waiting in the van, sheltered from the frigid air, or the humid heat. We’d watch the bus go down and pass us, and then come back up with lights blinking. And every afternoon, I’d wait for you, or would sometimes be late and pick you up, leaving my car at the mailbox and running you home, sometimes in pouring rain.

Today is the first day we don’t get you ready for school in the morning, packing your backpack with fresh bibs, extra feeding bags or diapers for school. Today will be the first afternoon we don’t pick you up, and check your backpack to read the notes your teachers had sent home. Today is the first day I don’t stop to think about what you’re doing in school. If they are taking care of you, if you are OK there. Instead, I’m crying in my office writing you this letter, hoping my burst of tears aren’t loud enough to hear outside of my office door. And instead of worrying about you, I’m worrying about Mom.

For 15 years we got you ready, changed you and fed you, then took you to the bus. Sometimes it was hectic, and we were running all around. But you were always calm, watching us stress over it all. Every once in a while, Mom would need to go to your school for something, sometimes to drop off medication. And she would always drop in and see you, check in on you. Can I ask you a favor? Can you drop in and check in on Mom today too? I know she would like that.

One of the greatest influences in my life, the late Pamana Tuhon Christopher Sayoc, Sr. said that, “since we can never get it back, time is our most precious commodity.” Of all the things in our worlds, money, comfort, recognition, status, are all things we can get them back. It might be difficult, or may take a long time. It may even feel impossible, but we can regain them. Even our health. But time is something we can never get back. In our world, time only moves forward. My teacher, Guro Inosanto has said that Bruce Lee’s greatest fear was getting old. All of us, whether we recognize it or not, are subject to the crushing inevitability of the arrow of time. Of age. Of the fleeting present, and the flowing past.

Pamana Tuhon would go on and urge us, that since we can never get time back, since it is our most precious commodity, then we should not waste it. Like anything precious in our lives, we should be careful stewards of it, nurturing caretakers of it. We should not let it go to waste, we should not give it away. Least of all, we should not give it away to people we do not want to spend it with. Like anything precious, we should spend it on, and with, people who are important to us. People we love.

The psychologist Daniel Kahneman reveals that most of us make future plans influenced by the memories we expect to take from them. Vacations and trips, all carefully plotted out and documented with amazing backdrops, delicious foods, smiling faces. This magnificent atemporality, our ability to plant and author our pasts by directing our futures is an amazing gift unique to our humanity. If we are careful, we if are intentional, if we are nurturing and thoughtful, we can fill our lives with meaning that we know we will never get back. But we can visit.

After William was born, from the very first day, I took countless pictures on our new digital camera, and hours and hours of video on our camcorder, a wedding gift. I would save the tapes as video files, then burn to DVD’s that we sent to our families, thousands of miles away. We were so proud to share his life with them, long before FaceTime and Zoom. We were also scared, that the little time we had, the little documented bits of his life, would be our only. Our last. The dark days in the NICU turned to excruciating weeks, then marathon months. And after 17 weeks, he went home, only to stop breathing two weeks later and start another months long journey in and out of the hospital.

Our pictures and videos started to change. PICU rooms and oxygen tubing on William’s face became balanced with parks and beaches. The world was open. Hopeful. We made new memories. We filled them with William in Santa hats, in an Easter basket with bunny ears. With costumes for Halloween, on trips to the Empire State Building, Magic Kingdom, and even Lourdes in France. The chandeliered mosaic of our family became illuminated with sparkling twinkles, soft glow, and iridescent brilliance. William was joined by a brother, then a sister. We moved houses, moved coasts. Bought our first house. Our videos were no longer simply his little face inside an incubator, they were epic motion pictures of William wearing suits, attending fancy events, travelling the world. Even if the world was a orange, sunset lit walk outside. Or, if the whole world was just sitting on our couch, recording silly faces and filters of William with long hair, a mustache, or whatever was on Snapchat. What once felt like a fear filled attempt to capture fleeting moments of life, became a joyous tribute to all of our life’s nooks and crannies, the deepest canyons and majestic heights.

I’ve come to realize and appreciate so much, that we can visit William not just in pictures and video files. We can visit him in places, once and still filled with his presence. I hear his voice (snorts) coming from his room. I feel his soft cool skin as we walked on the panhandle last night. And even more precious, I see his face when we are surrounded by family. In their faces. I smell his hair in his siblings hair. I meet his gaze and mischievous smile when I hear Mamom’s stories about him, even her trip to the principal’s office when I accidentally sent a “huge knife” with him to school on his wheelchair. I don’t just visit him in the past, confined to memory. I visit with him in the present. He visits us in our stories, in our laughter, in our hugs, and though painful, in our shared tears.

William lives in us and through us. He speaks through our stories, from the past and projected into the future. I told Pamana Tuhon before he passed away, that his teachings were one of the main reasons we decided to move back to Maryland. We wanted to make sure that our kids’ childhood memories were filled with vibrant family. Close. Young. Full of life. Jennifer and I wanted to plant sweet seeds that would grow into beautiful fruit, ripe with nostalgia and memory. What I appreciate now, is that it wasn’t us that did that for them, it is them that continue to do it for us. It is William that has filled my life with hilarious adventure, with a depth of peace and calm I’ve never known before, with a lens of gratitude that has made everything I see, in loving brilliance.

I don’t just hear an echo of William’s sounds in my memory. I hear him speaking with a wisdom outside of time. To be a careful steward, a curator of our lives. To spend it with people we want to spend it with, because that is where he is still with us. With people we love.

I love you so much, my handsome.