My Heart is Full

5 Year Anniversary

Today, as a family, on the 5 year anniversary of losing Jason we are taking a few moments to remember Jason. We do this everyday, privately and amongst ourselves but today it feels important to share who he was, to share our pride and joy – Jason. It is time to celebrate his life and share the joy of Jason.

Some family and friends remember Jason for his wit and intelligence, some for his friendship and caring way, some for his extreme love of fancy food, and others for his ability to jokingly diss you and turn your own words back at you in a hilarious way; we all remember Jason for his love.

Jason’s love was shown to all of us in a variety of ways. His position of not being able to walk and eventually become unable to even lift his arms gave him a perspective that sometimes made us all stop and reflect on what we were focusing on as important. Jason never made anyone feel badly for their worries, he simply put them in perspective. Interestingly enough, he didn’t do it by talking about himself and his struggle. As a family we did not hear him discuss his inabilities. In his 20 years I heard him ask “why me” only one time. Pretty impressive I’d say.

In the moment, while we were living through Duchenne Muscular Dystrophy, this fact about Jason didn’t hit me as remarkable. Today, as I reflect I see Jason’s quiet patience and acceptance of what he was given in life as truly inspirational. Jason can best be described as an old soul. His logic was absolute, he wasn’t always right but he cut through to the heart of a matter with a clear vision. Usually we stood back in awe and said “ya, what he said”. I wonder now how he knew so much in his young years.

Jason and I had a special relationship. I feel that supporting someone with special needs creates a unique and wonderful bond but I also believe that it was because we spent 7 years alone together before we met John. In Jason’s later years and as time went on Jason became more determined and strong minded. He worried for others before himself. I recall him asking me why Jordan was standing up on a swing. He was protective of those he loved and did not want hurt to enter into our lives. Jason loved his brother Jordan, he spent time teaching him to read and play video games. Jordan has so many strong memories because of that intense time. We believe now that Jason knew that his time was precious.

Jason’s way of looking after others was most prevalent when it came to me. He worried about my worry. I worried about him constantly. As his Muscular Dystrophy started to progress Jason was most comfortable at home. Forcing his body to go anywhere was a challenge. We accepted this as the reality he faced and let him lead the way. In saying this though, he always made sure that I knew that he was okay. A strong memory for me is Jason coming over to chat while I was doing laundry. His exact words were “Mom, I don’t want you to worry, no matter what happens, I have resolve”. The words hit me as powerful but didn’t sink in until much later. I felt pride but we kept going about our usual routine.

A few years later Jason was clearly losing most physical function. We needed him to have support at home. John and Jason as a team decided to start a business. The business was Resolve Apparel. Resolve Apparel modified clothing for people with disabilities. Jason’s job was to attend shows, hospitals, etc to demonstrate their effectiveness. A blanket was modified to wrap securely around a wheelchair, a nightgown or shirt was modified in order for stretching and bending to be reduced. They made a great pair. John loved Jason like a son and Jason 100% felt the same.

I never thought that Jason had a clear picture of how his disease would progress. I made a decision to protect him from the whole truth. Little did I know that later I would find out, at his funeral to be exact that Jason had asked other family members to take care of his mom. He left clear instructions, he knew that I would hurt deeply and he wanted support for me when he couldn’t be there. Today, I wonder who was protecting who. Jason clearly was looking out to protect me from pain.

Three weeks before we lost Jason we went to a specialist appointment. We were seeing a cardiologist and then seeing his neuromuscular specialist. The cardiologist was not happy with the speed of Jason’s heartbeat, he said that it was too fast. He instructed us to take the results to our next appointment. The neuromuscular specialist told us that yes his heartbeat was elevated but that he didn’t see any reason to be overly alarmed. I worried, from that moment on I was concerned, it just didn’t feel right. Jason made a joke every day about my worry, he was trying to get me to stop. I followed up with the hospital a few times but did not get a different answer.

I always tucked Jason in at night. Every night for years and years Jason would say “love you mom”. He often yelled it out at me out of the blue when he went to bed early and worked on his computer. In the last week of Jason’s life he twice did something differently as I tucked him in. He made me stop and focus on him, he said “mom I’m fine, you need to know that I’m okay”. I asked him if he was sure, he said yes. Within a few days of each other he told me very seriously that he was okay. I accepted his message and let go of my worry.

Then the worst happened, we lost Jason because of his heart failing. I thought for so long, “see you were not fine”. Today I think differently. I think that Jason knew that he physically wasn’t fine, I think that he knew that the disease of Duchenne would take him. I believe that in having this knowledge that he wanted me to know that he was fine and that through me he was telling everyone else.

With this in mind our focus became on what Jason missed throughout his life with DMD. We knew that he missed out socially. His resolve became our focus. I HAVE RESOLVE is our message because of him. We hope to promote inclusion and friendship for anyone with a health, cognitive or physical challenge. Jason taught us the true meaning of love. Hopefully his message can help others in life. His life has a meaning that we will never forget.

Loss and grief are gut wrenching. Loss of a child is painful beyond any words I could write. Love on the other hand is what becomes clear once the fog lifts slightly. Our love, the love and gift of Jason will forever keep my heart full. We all face pain and loss in life. John, Jordan and I have decided to focus on the gift of Jason. His gift is what carries us forward. We are grateful for the love, so even with pain MY HEART IS FULL.

Jennine
aka Jason’s mom