On Wednesday, July 24th, 2024, Orrie passed away peacefully in my arms. So many people who loved Orrie surrounded me in his room while we waited for David to arrive. I thought it was protocol but they just wanted to make sure I didn’t feel alone as Orrie took his last breaths. They cried with me, shared how much Orrie meant to them, and made me feel like we were surrounded by family, because we were. He was special to them and they will always be special to us. I can’t say enough about how thankful we are for everyone at Helen Devos Children’s Hospital especially each person who made up the PICU. They cared for all of us, especially Orrie so incredibly well.

Nothing about Orrie’s life was straightforward but I think that’s what made him so special to so many people. He taught us so much. One of the biggest lessons I think a lot of people learned from him is that hard times will happen but even in the most devastating of times there is always something to smile about. He was the happiest baby even in moments I believed were impossible to smile through. That smile got us through several of the most traumatic days of our lives. Our hearts hurt more than I ever knew they could and we have cried enough tears in the last 18 months to fill Lake Michigan. Despite all of the hardships, he has given us so much to be thankful for and so much to smile about.

We are so thankful that we were able to bring him home for 6 weeks last year and will cherish those memories at home forever. We’re thankful he got to meet and love both of our dogs before Ola passed away last month. We’re thankful Boone was able to hold him, play with him, and build a brotherly bond with him both inside and outside of his hospital room. I’m thankful David and I had the joy of having him as our son and that we had the time we did to show him how much we love him. We’re so thankful he got to meet his cousin Jubilee and all of his grandparents, great grandparents, and aunts and uncles. We’re so thankful for all of the support we received from family, friends, strangers, and everyone who made the hard times a little easier. Your prayers, love, well wishes, and support have been so helpful to us over the last year and a half.

We are also so thankful to have met so many wonderful people through his care and to have had such brilliant people include us in his care team. I know he got the best care imaginable because I was fortunate to be there in rounds almost every day watching as each person helped paint a full picture of how Orrie was doing. I will always be thankful for every nurse, ICU doctor, cardiologist, nephrologist, pulmonologist, therapist, dietitian, pharmacist, fellow, resident, and all the people I know I’m forgetting for welcoming me, a photographer with 0 medical experience, to learn and grow and help paint that picture of how Orrie was doing because I was his constant. We are so thankful for his nurses and therapists. They are such kind, compassionate, smart, loving, perfect humans. I love so many of them so much it hurts to know I won’t see them or talk to them regularly anymore. We will always be thankful for Dr. Jean Ballweg, one of Orrie’s main cardiologists. Jean fought for Orrie and fought for us. She made sure the team stayed on course and didn’t get derailed too much week to week with doctor changes. I have never met someone so selfless, so caring, and so brilliant. She is the most extraordinary person I have had the pleasure of knowing. Truly the best of the best. I’m also thankful for Dr. Hammel and Dr. Haw and everyone on the surgical team for spending long hours operating on his tiny heart meticulously and with extraordinary care. I could go on and on highlighting different people in the PICU that have impacted our lives but I would be here typing for days. These words will never bear the full impact of our appreciation. We love them and are so appreciative of everything they did for Orrie and for us.

I know we will be hurting for a long time but we are stronger people now because of our experience being his parents. Our hearts can hold more love and we have a deeper understanding of what actually matters in life. I am thankful he got to know us and we got to know him. We are just so thankful for Orrie. Every big smile and laugh. Every side eye. Every time he beat the odds. Every moment of every day he was here. And now we are thankful he doesn’t have to struggle or feel pain or discomfort anymore. He’s in heaven playing with his dog, Ola, and his cousin, August, free from any drugs, pain, or health issues just being the happy playful baby we know him to be.

When he was born, we found out he had CHD when he was just over a day old. After we found out, the sun shined for about a week straight in one of the darkest months of the year. Every time the sun has shined since, it has given me hope and made me think of him and his big smile. A few minutes after he passed, I noticed the sun shining into his room and I felt like that was him telling me he loves us and that everything is going to be ok.

I know he will be with us every second of every day reminding us how precious life is and how love is the strongest feeling in the world. ♥️ We will love him and miss him every day until we have the immense joy of being with him again.

We love you all so much, Hayden, David, and Boone

If you’d like to show your support for our family during this time we would love if you would donate to the children’s heart foundation in his name.  Also, please donate blood if you are able and become an organ donor if you aren’t already. All of those actions help save the lives of so many people in need.