Cody Updates by Mom

Today I learned of the passing of a seahorse friend. Those of us that have had to have a total gastrectomy due to CDH1 genetic mutation often refer to ourselves as seahorses. They too do not have stomachs; however, they are still beautiful and strong.

This friend I never met; I never even spoke to her on the phone or had coffee together. She was my friend, none the less. She was a friend of a sort that I have never had.

Joan reached out to me many years ago. She had my exact story in her journey. She had breast cancer that she beat and learned that she had the CDH1 mutation. At that time, she had found my blog and reached out to me. She had so many questions and fears. All of the same fears that I had when I had gone through the same process a year and a half earlier.

We shared a friendship on a level that I had never known. We didn’t hang out or chat. We healed. We shared our fears, our failures, our struggles and our lives. This type of friendship is so rare to me. So many times, with our friends and family, we put on the brave face, we show strength that is pretend to not make them worry. This friendship was not that. It was a very real and raw experience.

While we never spoke, we did write. Our words formed our thoughts our fears and the path we were on. I was always so very thrilled to see an email from her. Words had been such a part of my life that this gift of someone that wanted to write to me was heaven.

It had been time since we wrote. Over the years, as we had figured out life without a stomach, we didn’t email much. Life got busy and it was hard to sit down and write. Similar to this blog. I have not written much as life has moved on and the day to day take over.

Earlier this year, I reached out to see how Joan was doing. Months went by and an email finally came. She had lost my email but wanted to connect and to share the recent health situation she was dealing with. As it had been recently, a good many weeks went by before I sent her my email and letting her know it was fine that there was a delay. Life is life. My last email was a second reach out to her just in case she missed the last one. It was only a few weeks prior to her passing.

Today, I checked for an email again and did not find one. On a concerned note, I checked online and found her obituary. I had suspected it as she had typically not gone this long without communicating but I was still shocked and sad. Joan passed on 4/20/22.

This woman was a beautiful soul, she was so giving and loving of her family. We shared stories of our children and how we feared for them receiving this gene mutation. We shared their successes and our pride of how amazing they were.

I went outside today and saw a rainbow. It wasn’t raining so I know that Joan was sending me her goodbye. May we meet in heaven in the future and share our words again.

Whatever your last journey was, I was relieved to see that you were surrounded by your family in those last moments. May your rest be peaceful, my dear friend.