It’s been such journey with this little girl. We are three and a half years into our rare disease journey and it has been nothing like I imagined it to be. One thing our society doesn’t talk about enough is mental health and the challenges we all have. To say I was struggling from a mental health perspective in the weeks and months after Hayden’s birth is a massive understatement. I recognized (with the help of some loved ones) that I needed to go through therapy to get myself on the right track.
In one of my therapy appointments early on in our journey, I was describing to my therapist how I was feeling and how my life was changed forever. I was talking about the things that I wanted to do in retirement before she was born, which seemed like an impossibility at that moment. Trips to Europe, gone. Playing golf at will, gone. Taking my kids and grandkids on vacations, gone. I also felt guilty about the life that Hayden was going to lead. I wasn’t sure if she would ever be able to eat and drink by mouth. She would never experience the joy of chocolate or ice cream. She would never be able to communicate. She would never be able to walk.
I remember the next couple of questions and statements my therapist made vividly. How do you know these are going to be the outcomes? Who is saying these are going to be the outcomes? He was challenging me that I was making predictions about the future that I did not know. He was challenging me to live in the moment and enjoy the little things that come from the moment. He also pointed out to me that humans, in general, are not good at forecasting the future. That last comment I took offense to because it is a large part of my job to forecast the future! But he was right.
Fast-forward to 2025. Hayden is eating and drinking by mouth. Hayden is communicating via sign language and body language. Hayden is walking. Hayden is developing her own sassy personality. Hayden is engaging with friends. All of my predictions about her were wrong.
Hayden has been blessed to have many people in her life that love her. One place that she is loved is at her preschool, which she has gone to for two years now. She feels comfortable there. She has developed a loving relationship with her teachers, Ms. Carrie and Ms. Alexis. She has gone there with her loving caretakers, Madison and Jessica. She has developed some friends there that look out for her. All of this can be seen in this video below, which I call “The Mayor of HUMC”. Hayden is shining through with her personality. She is doing her thing, walking and waving, owning the room.
My therapist was right. Live in the moment. I don’t know what tomorrow holds, so don’t try to forecast it. Hayden will do what she is capable of doing, our job is to give her every opportunity to shine.
Mayor of Huntersville Video: https://youtube.com/shorts/FgsHLbxFcXc
Here’s to Hayden!
Matt and Courtney
