Full Circle

It was 9:03 p.m. and I was engaged in my nightly routine- brush, wash, pjs, and off to bed. I was exhausted and could not wait for my head to hit the pillow. But my phone pinged and I was drawn immediately to a message in my Instagram inbox.

Someone found me. The gist of the message was that this woman had just found out her child had Jordan’s Syndrome. She had searched around Instagram looking for information on the specific gene mutation PPP2R5D, and she was concerned that she would not find anything. She said my page was the first thing that came up on her search.

Holy. Crap. Cue the tears.

This is my why. This is why I started my blog, my social media outreach…because I was once this woman; lost and looking for answers.

I too, searched the internet. I was so fortunate that I was directed to the wonderful families on the Facebook page, the Jordan’s Guardian Angels liaisons, Carole (parent and research team contact), Brittany, and Christina.

I found comfort in so many other mothers, fathers, siblings, and other caretakers, but I wanted and needed more.

All the while, I was struggling. I was in a place that I needed to escape, and was finding comfort wherever I could. My dear friend Emily has been one of my biggest supports and one of Hailey’s biggest cheerleaders. I have found, on this journey, that there will be some people in your life, who just step up to the plate and show up when you need them. She is one of the first people who I lean on whether it be Hailey’s accomplishments, my fears, questions, and so on.

One day, in a moment of self-doubt, she sent me this quote.

“I believe in that baby girl and I believe in you. You just wait, she will do it all,” one of the many words of encouragement Emily would share. But when she sent this message, I was unsure of the truth behind these words.

Well, here we are. Full Circle. I don’t want to say I am on the other end of it, because I am not. Some days, I feel like I am right back to where I started, and other days, I feel like I can conquer the world.

Today, those powerful words have truly stuck with me. I know it may not mean much to others, but for me to be able to guide another mother, looking for answers about her child, shows me that I have traveled this circle, and I will continue to do so, in order to change this idea of “rare diagnosis” and not make it feel so rare or isolating.

I hope, in years from now, Hailey, will be doing the same thing as me. But, she will be on the other side of it. Right now, this is the story of my family and how we are learning and growing with a rare diagnosis. But one day, you just wait, Hailey will be sharing HER story and how she overcame.