J.A.M

 5 Year Anniversary

April 17, 2023

I have been waiting in anticipation for this day to come as it marks the five-year anniversary  of the day we lost an incredible man, Jacob Madonia. It is hard to believe that it has been half a decade since he left our physical world. It is a day and a life I will never forget or move on from – although I am learning how to accept that and move forward. 

Here is what I have learned so far: 

Grief is a chronic and permanent multitasking emotion. 

My grief is here to stay. It cannot be fixed because it is a part of me. It has shaped me into the person I am today. It's not good and it's not bad; it just is. People reference grief as an emotion that comes in waves and that is an accurate description in my experience. Sometimes it’s anticipated like on holidays and birthdays. Other times, it hits me without warning like when I was watching Nalina eat a slice of bacon – one of her dad’s favorite foods – and she said, “Momma, remember when dad would call me ‘meat sack’? He was so funny.”

Progress over perfection. 

As a Type A, oldest of four, Catholic Italian, that is not an easy thing for me to say, but it is the truth. There are days I feel great like I am moving forward in a healthy way, and I might even say I am proud of the work I have done. Then there are days I feel stuck or even like I may be going a bit backwards. I wish I could say that after you complete through the five stages of grief and receive a passing score, the task is completed, but it doesn’t work like that. There is no right or wrong way when it comes to riding the waves of grief, but there are healthy and unhealthy ways to respond to it. I am learning to take the good with the bad and accepting that I am a forever work in progress – and, most importantly, that is okay.

Don’t apologize for your grief and always protect your peace.

I have been considered by many to be a people person. I take pride in wanting to build and maintain relationships with others. With that, I can become overly concerned with how people may respond to my story or thoughts and feelings. I have learned and accepted that not everyone can handle the uncomfortableness of my grief. I continue to be grateful for the huge support system Nalina and I have that meet us where we are at and stay the course with us. Relationships have been fostered, started, and ended in the past five years, and it has been a learning experience for my daughter and myself that continues to build our strength and shape us into who we are.

You can choose to find joy in grief.

Through actively shifting my mindset and perspective on situations, I can find joy in the life and loss of Jake. Looking back at the life we had when Jake was here, it was a decade filled with hospital stays, treatments, scans, and surgeries. Our 20s were not filled with big vacations, a lively social life, and/or fancy things, but it was rich in the little things like conversation, laughter, and gratitude for the time and partnership we had together as we walked through his diagnosis together from start to finish. Since his passing, I am able to smile and be grateful for what he taught me. I find joy in watching our daughter grow and experience life knowing she will always be his and our biggest accomplishment. From the things she says and writes to watching her interactions with those around her, she is my light and my “why” to continue to move forward and find joy in our journey. 

Experience, celebrate, remember. 

Grief is not passive. We need to actively participate in experiencing it, remembering and celebrating our loved one as we see fit. Jake was a selfless person and forever paying it forward to someone else even when he was at his worst.  

Since 2015, Jake and I have been involved with the Ride for Roswell. When Jake was healthy, we rode, and when he was not, we donated. Team Madonia is comprised of family and friends that were connected to Jake in some way. Since the start of our foundation – The Lotus Flower Giving Society – we have made it part of our mission to participate annually in the Ride and earmark all of the funds raised for the Sarcoma Registry Research Project at Roswell Park.

Jake supported and believed in this project as it will help track treatment plans and outcomes of sarcoma patients to help future patients live healthier and longer lives – and possibly lead to a cure one day. I am so pleased to share that this project is complete, and the Sarcoma Registry is being actively utilized.

If you are unfamiliar with sarcoma, it is a type of cancer that starts in tissues like bone or muscle. It is an extremely rare, aggressive, and under-researched cancer that is typically found in children and young adults. The funds raised by our team this year will be earmarked for additional sarcoma research initiatives. 

That said, we would be remiss to not acknowledge the ongoing public scrutiny directed at Roswell Park. We stand in solidarity with Jake’s doctor Anne Grand'Maison, and we know that if Jake were still alive, he’d be doing the same. 

While we have made the decision to continue to participate in the Ride, we are doing so to honor and celebrate Jake. Come as you are. Give what you can. The real gift is your presence. We also look forward to a special after party. Sign up here to participate with Team Madonia and receive more information about how we’ll be celebrating on June 24: https://give.roswellpark.org/site/TR/SpecialEvents/General?fr_id=1830&pg=team&team_id=13450. 

Thank you for taking the time to be a part of my journey.

Out of Darkness Comes Light,

Lorrina Kostuk-Madonia 

Co-Founder & President 

The Lotus Flower Giving Society