Why blog about it?

First and foremost, I want to thank those who sent messages, subscribed and shared my first blog post. That means so much to me... For me sharing is coping and learning, it is so important to be able to share and relate to one another.

When I first found John’s diagnosis, I quickly googled it but like a good millennial I also looked at my social media sites. I searched for any kind of hashtag, profile, just anything that I could use to normalize my situation. I had found very little and for me that was heartbreaking. I was never in denial about John’s diagnosis, which can be very common and normal to do. However, I wanted to face it and just do what I had to do. I remember the day we took him home from the hospital. I sat in the back and I requested that my husband put on a specific song, he asked why and like a cranky, just gave birth don’t question me wife, I said sternly “JUST DO IT!” … he he so he did, and I began to cry. I watched John’s little 3-day old face on the way home, and something struck me odd, it was like I knew…but I had no idea…. **For reference, that song was “Todo Homen” by Caetono Veloso.

My saving grace the moment I had a diagnosis was being able to visit everyone at the Helping Hands for Gand conference back in July 2022. I really wanted to put faces to Gand. I wanted to see the families and hear their stories. I had a huge need to normalize a very difficult situation. There I was so lucky to even find a family from my country of Brazil. Julianna and her family were incredible. Seeing them just gave me light and strength. My husband and I spoke to so many different families and one thing I can tell you was being able to speak to someone and having them understand exactly what you are going through is Gold in times like these. Everyone was so kind and willing to speak to us.

That is my why, it is the reason I felt the need to share John Ryan’s journey. If I could make anyone feel comfortable, relatable, whatever they need to feel to get through their diagnosis, I know I willed have reached my goal. Being alone in this for me is not an option. I need support and I want to give support whenever I can. We appreciate all the support our family and friends give us. However, sharing our story and listening to other families going through this or something similar hits another note. It becomes such a breath of fresh air not having to explain so much and having someone who just get's it. You need both those groups because this is long journey and you need everyone on board.

This journey is a bittersweet journey, it has its very low moments, but I have learned so much and I am so grateful for everything this past year. So, thank you, to each and every one of you who have supported me, who has shared your story with me and those who are learning with me.