Five weeks ago today, we lost our son, Remy Dornich. We had a small gathering at our home a week after Remy passed with some of our closest friends and family to celebrate him. We shared some words; I guess it would be considered his eulogy. After having some time to reflect on what we shared at our gathering, I expanded upon this tribute with more thought, gratitude, transparency, and vulnerability with the intention of not only honoring Remy but hopefully helping others who have lost a child. For many, especially dads, it is natural to suffer in silence, and maybe, just maybe, these words can help others recognize and shift their focus from the confusion, anger, pain, and litany of other unfavorable emotions and otherwise excruciating experience to the camouflaged break in the clouds.
It is easy to simply boil down our experience to a nightmare and it certainly was in many ways. It was torturous and miserable, even traumatizing at times. I don’t think the pain of losing our son will ever go away and I am not even sure what the game plan is to properly move on but I would like to focus on the positives and celebrate Remy’s profound impact on our lives.
Perhaps the positive focus is just a coping mechanism; perhaps it helps me answer the unabating WHY question; why Remy, why us, why me and maybe focusing on some positive outcomes helps assign meaning to this inexplicable, confusing experience. Or perhaps Remy was just not meant for this world and he had a greater purpose that is not yet evident. Wired as a problem solver, not being able to break this series of unfortunate events down and answer why this has happened to us has been torture. I may never solve this agonizing mystery, why Remy was taken away from us, why we have had to endure the inconceivable but I do know that he has been the single greatest gift and teacher I have ever had. There are seven prevailing gifts that Remy has given us- mostly lessons he has taught us or helped us see through a new lens. Some of these lessons or knowledge points were things that I had some level of exposure to before but didn’t absorb to this extent. Perhaps I needed my world to be flipped upside down with a tragedy that rattled every fiber of my being before I could pull my head out of my ass and view life with a new perspective. “Rock bottom became the solid foundation on which I rebuilt my life”
Remy’s 7 Prevailing Gifts:
1. HE MADE BECCA A MOTHER: “Being deeply loved by someone gives you strength while loving someone deeply gives you courage” – Lao Tzu
I always knew my wife was special and I have said for years that I felt like I won the lottery with the most amazing future mother that my children could ever have. It wasn’t just a hunch or wishful thinking, she has a gift with children. Early in our relationship she started a preschool in Philadelphia and the neighborhood moms referred to her as the “toddler whisperer.”
Becca reaffirmed this a million times over during this journey. The way she battled to keep Remy in for another 8 weeks after her water broke even though it meant putting herself through hell and being on bedrest and stuck with needles nonstop (her biggest phobia) and of course countless other scares and discomforts. The way she flooded Remy’s soul with love, which he would soak up, marinate in and wondrously radiate the most incredible love back to all in his presence. The way she digested tons of medical terminology to ensure she understood what was going on with Remy so she could ask intelligent questions and best advocate for him. Her astute observations and assertiveness led to positive changes in Remy’s care on numerous occasions. I even enjoyed seeing her swat a doctor’s hand off Remy when she noticed Remy was starting to get worked up and the doctor was not picking up on Remy’s cues or Becca asking her to stop touching him. On New Year’s Eve when Remy’s underdeveloped bronchial tubes spontaneously collapsed while sleeping in her arms, his breathing halted, he turned blue, his heart rate and blood oxygen plummeted over the next few minutes (which felt like an eternity to us). The situation became so severe the nurses set off a unit-wide alarm for urgent help from anyone in the area. At least 15-20 doctors and nurses raced into the room to help. When most people would have either been stunned by fear or overreacted, Becca maintained her composure, continued trying to soothe him, as she calmly helped get Remy back into his crib to be resuscitated, despite being shaken to her core. The nurses who witnessed Becca’s supermom heroic behavior were in awe and could not stop complimenting her. I could go on and on but the point is, through this journey I have had the opportunity to watch the most remarkable woman I have ever met become the most remarkable mother I have ever met. "Being a parent is learning about strengths you didn't know you had and dealing with fears you didn't know existed" 2. HIS PRESENCE: “Today is a gift, that is why it is called the present” -Sri Sri Ravi Shankar
Remy gave us the gift of his presence. Despite being an infant and not having the ability to talk we connected on another level. Like most parents, I'm sure we have extreme biases but this boy was extraordinarily special. His nurses marveled at him and became deeply connected with him after just a short time in his presence. He had an unbelievable aura, one that radiated love and brought tremendous joy to the lucky few who had the privilege of meeting him. Somehow, in his presence, especially while gazing into his deep, beautiful, magnetizing eyes, we naturally fell into the present, a state of pure bliss. The irritating beeps and bells of all his monitoring equipment transformed into a melodic resonance, a soothing metronome of his being.
His ambrosial scent is the most intoxicating thing I've ever experienced. We keep his unwashed flannel and the pillows and blankets from his last days in Ziploc bags to preserve the smell as long as possible. Everyday we sit, reveling in Remy's redolent relics, feeling viscerally sharp bittersweet emotions. This daily observance is the closest we come to connecting with him during our waking hours.
While doing kangaroo care (skin to skin holding), he would hold and gently pull on my chest hair, finally giving this perma-sweater-chest-vest some purpose and reminding me he was still awake when his body was calm and face was turned away. He also used to run his fingers through my beard, delighting in the unfamiliar texture. He used to love having his feet kissed. His leg would slowly retract back into a bend and a moment later he would lift it up towards me, connecting with his inquisitive eyes, soliciting another kiss. The wires and tubes created challenges while trying to hold him. Perhaps these obstacles made the moments we had even more sacred or perhaps just any physical bonding with your child is always that special. Due to strict visitation rules during the flu season, which coincided with the entirety of Remy’s stay at CHOP, only we and our parents were permitted to enter the NICU. At the end, when Remy was slipping away, they made an exception and allowed all of our immediate family to visit with him and say their goodbyes. It was an extremely emotional time, to say the least. Everyone rotated to and away from his side and had a chance to be with him. Becca and I stayed there by his side (just like every other day) and found joy in watching others experience his aura and also reciprocate such intense, palpable love back to Remy. At one point, Becca’s brother, Scott, was the only one with us and shared and inexplicable bond with Remy. He looked up with tears rushing down his face and said…”this was one of the…” then paused. I thought he was going to say “one of the hardest/saddest things he’s ever experienced.” Instead, he captured and perfectly articulated what we hoped our family would experience; the tears and sadness were (and continue to be) inescapable but we wanted our son to be celebrated and not viewed as a tragedy. When Scott looked up he said, “This was one of the greatest days of my life, Thank you! I found a well of love I didn’t know existed before Remy.” Scott is a devoted father to an amazing eight-year-old daughter, and loving uncle to two nieces and two nephews, all of whom are incredibly sweet, beautiful, charismatic children. He has a huge heart and has had the opportunity to experience the greatest and most unique love anyone could ever experience which makes his special bond with Remy that much more precious to witness.
To observe the flow of love between Remy and others, especially our family, was the most tangible divinity I’ve ever experienced. “I found a well of love I didn’t know existed before him” –Scott Silver
3. COMMUNITY- “Family… a group experience of love and support”
We are incredibly grateful to have the community we have. We already knew we had great, fun, kind friends and family but man oh man did you guys really step up and support us when we needed you most. We didn’t know how to navigate this journey, we didn’t even know what to ask for but you guys gave us the strength to carry on over and over again. Whether it was thoughtful texts and calls just checking in and sending love, meals, care packages, massages, help around our house or countless other thoughtful, loving gestures- it all meant the world to us.
Despite being dealt a really, really terrible hand, I still feel fortunate. When Becca was on bedrest for two months, we shared rooms with others in a similar situation; premature birth or imminent birth after water broke prematurely, etc. Some of these women did not have a single visitor for the entire time we shared a room. Not only were they perplexed and afraid, as anyone would be in this situation, but they were also alone. I don't think I took our friends and family for granted but Remy presented an opportunity to reflect on how incredibly fortunate we are to have the community we have. They say you can pick your friends but you cannot pick your family. I will shamelessly brag that we have done an outstanding job at picking our friends and we have been incredibly blessed with amazing family on both sides.
I often try to solve problems on my own, maybe it is a byproduct of stubbornness or a result of ego and not wanting to ask for help. This harrowing experience drove me to a place of desperation and vulnerability where I was woken up to not only accept help but to ask for it. Along with Becca's love and my daily Art of Living practice/foundation, community was the third pillar that held me together, helped me survive this experience, and come out a stronger person. “Humility is the ability to give up your pride and maintain your dignity”
4. SERVICE: "The best way to find yourself is to lose yourself in the service of others"–Gandhi
Another gift Remy gave us was helping us learn to be selfless and focus more on others. Sri Sri Ravi Shankar, the founder of the Art of Living says something to the effect of “when you feel at your absolute worst and you want to feel better, forget about yourself and go do something for someone else.” This is a bit counterintuitive, if you are hungry you can’t feed someone else and feel satiated but with emotions it somehow works. I found that when we were most in the pits, we felt most magnanimous and thoughtful. It wasn’t a conscious thought like, man I feel terrible today, if I do something nice for someone maybe I will feel less terrible. I am also not fishing for a pat on the back, I just wanted to highlight this realization because I truly believe we all have this love deep down and sometimes it is hard to access the selflessness until we hit rock bottom.
Aside from some random acts of kindness, which felt good over the past few months, look at what we’ve all done with the Remy Foundation and how many lives Remy has touched. To have an official foundation through CHOP you need to raise a minimum of $25,000 over five years and if we came up short in five years we would be legally responsible for the difference. I grossly underestimated the generosity of our friends and family, their networks, and the ripple effect he would have on others. In our first five days we surpassed our five year goal and The Remy Foundation website was visited over 12,000 times in the first week. As of today, five weeks since Remy moved on, we have raised over $33,000.
“The quickest way to happiness is learning to be selfless. Ask more questions, talk about yourself less”– Macklemore 5. PERSEVERANCE: “The tiny seed knew that in order to grow, it needed to be dropped in dirt, covered in darkness, and struggle to reach light”
Meeting Remy and battling for him has given us a new perspective on life. He inspired strength that we didn't know we had. I am sure we get some of strength and resilience from our parents and through growth opportunities that other life obstacles have thrown our way but Remy was the one who gave us the gift perseverance. Not only did he give us the opportunity to strip away the layers of ignorance and weakness, clearing the way to access our perseverance and forbearance deep down inside when we felt we were at a breaking point, he also led by example. Remy was a fucking warrior, who literally embodied a fight to death spirit. His body failed him but he never quit.
If someone told us we would need to go through what we had to go through and gave us time and any resources we desired to prepare I would still have no idea how to prepare for something like this. In retrospect, I am not sure how we got out of bed each day after waking up to the nightmare of our reality besides having and inexplicable love that fueled us through this marathon. We didn’t know how long we would be in the NICU (and certainly never thought we would return home without him) but every morning when we got back to the NICU we were recharged by his tenacious, indefatigable fighting spirit. No doubt, he was adorable, charming, and super cute but he was also tough. One nurse even said, “he looks so sweet and comfortable. I have to do his care soon but I don’t want to wake the bear.”
“Our actions may be impeded... But there can be no impeding our intentions or our dispositions. Because we can accommodate and adapt. The mind adapts and converts to its own purposes the obstacle to our acting. The impediment to action advances action. What stands in the way becomes the way.” – Marcus Aurelius 6. PERSPECTIVE: “There is no good or bad without us, there is only perception. There is the event itself and the story we tell ourselves about what it means” - Ryan Holiday
The second to last gift Remy taught us is to cherish every moment. He taught us how precious life truly is and to truly appreciate life’s greatest gift, our children. I know “cherish every moment” sounds cliché but let me explain.
Becca and I became abnormally consumed by Remy’s basic bodily functions and behavior that we would have otherwise taken for granted; from celebrating a poop to not needing as much painkilling medication to get him safely through the day. By teaching us this lesson he has helped his future younger siblings in countless ways. I always emulated my dad and aspired to be an involved father who showered our kids with love but because of this gut-wrenching experience, I will undoubtedly be more present and never take our kids for granted.
As a result of my self-imposed unreasonably lofty professional goals, I work crazy, demanding hours trying to financially support our family and build a future with flexibility and comfort. Additionally, I contribute to our household in other ways and Becca likely would have been “making her contribution” to the household by taking on the majority of daily childcare responsibilities, especially cleaning up the messes, changing a poopy diaper, or needing to console him while he was crying throughout the night. I likely and ignorantly would have looked at these things as burdens or annoyances. When we would both be drained after long days we would have “taken turns” for who has to deal with it. But now, this very bitter, poignant lesson has opened our eyes and I can’t wait to change another poopy diaper or calm our tantruming child or have the opportunity to hear our next child cry (which we never had the chance to with Remy because he had a breathing tube down his throat his entire life).
“I tell a bereaved parent that you inherit the years your son did not get to live out. Those years are a precious legacy from them to you, use them well”- Harold Kushner
7. UNCONDITIONAL LOVE:“Love is the absence of judgement”- Dalai Lama
Lastly, the biggest and most important gift Remy gave us was the gift to love unconditionally for the first time. I used to think I love Becca “unconditionally” because that’s what people say who are madly in love but Remy taught us what true unconditional love is. The bond Becca and I have is incredible and I wouldn’t trade our relationship or the love we have for anything. However, I don’t think anyone can love another unconditionally except for their child. We all seem to have expectations or conditions in every other relationship except the one with your child; if a partner was abusive or unfaithful the relationship would fail (or at very least create toxic resentment). With that said, it seems silly to say we love our partners unconditionally when we all have very clear conditions for one another. But with your child, you just wish the best for them, you hope they can succeed or accomplish certain things and if those aspirations never come to fruition the love remains as powerful as ever. In any other relationship, our hopes translate into subconscious expectations and if things don’t play out the way we “hope” we are left disappointed. Ultimately, all we really hope and wish for our children is health and happiness and no matter what we continue to love them the same- which is unconditional, it is a binary yes or no, without a spectrum of varying degrees.
For us, we even got to a point where hoping for “health” was a relative desire and all we wanted was for our son to be able to breathe on his own. This precious act of life is so routine and instinctive that it is nearly impossible to not take it for granted. Still, when Remy’s body failed him and he wasn’t even able to breathe, our love never compromised, nor will it ever. Anyone or anything else that had any semblance of association with an experience that has caused this much stress, fear, pain, and grief would be resented or completely cut out from my life. However, for our son, our empathy and resilience grew and our love remained unconditional.
Remy gave us the greatest gift that anyone could ever give. Losing him has been inconceivably painful and that is because the love is so inconceivably real and powerful. Opposite values are complimentary; we cannot appreciate comfort without knowing what discomfort feels like and loss would not hurt if there was never love. After all the protective distractions of the day fade into the stillness of night, I become impassioned with grief thinking of Remy. I remind myself that it hurts so badly because the love we have for him is so extraordinary. During the periods of more pronounced emotion and grief it can sometimes be difficult to remain positive but I know how incredibly fortunate we were to bring such a special person into this world and have the opportunity to know him.
I don’t feel like there is a “hole in my heart” as I have heard some describe the loss of a loved one. I feel that my heart has been made whole through Remy, I just miss the hell out of him and wish we had more time together.
I ask that we celebrate Remy’s life rather than mourning him as a tragedy and make a conscious effort to help others as a tribute to Remy.
“Pain is inevitable, suffering is optional” -Sri Sri Ravi Shankar