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Being a mom and full-time caregiver to a child with medical needs is difficult. It is a lonely path when you feel no one understands. Even though you’re covered and supported, and have amazing family and close friends there for you, they never really can understand and experience the stress, sadness, and other emotions that come along with the path of life you’re on.

Once we received my son’s Alagille syndrome (ALGS) diagnosis I was overwhelmed with anxiety. I would have constant downward spirals when I started thinking about his prognosis and what his life would become. I needed to start monitoring my time spent on not only Google researching and reading, but the Alagille Facebook Page. Sometimes, I would read posts that would entirely scare me, and I would start spiraling downward. One time I had to cut myself off and take a few weeks’ break from the page and Google to get myself together and through the anxiety.

From there on, I started to have more anxiety and soon it became crippling. It started to affect several aspects of my life. I encountered anxiety at just about every turn—managing my son’s care, managing my own health as the anxiety intensified, and the many ways anxiety affected my interpersonal relationships. As one example, if I called my husband on the phone and he didn’t respond, I immediately worried he was in a horrible car accident.

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My world was changed so quickly with this ALGS diagnosis, that I always tell people I feel like I was “slapped in the face.” I was constantly analyzing and thinking about worst-case scenarios. If I already thought it out and was prepared, then I wouldn’t be blindsided if it came to fruition. I had to get myself together and free myself from this funk. I couldn’t live like this and couldn’t be the mom I wanted to be if I was living in this spiral of anxiety. I decided at that point that I needed to take care of myself and find things that I could do to help ease the negative thoughts racing through my head. 

The first thing I did was start therapy. It was short-lived (mainly because of insurance costs and childcare conflicts), but the few sessions I had were helpful. It was good for me to tell someone my story and express my real, raw emotions that I felt like I couldn’t even share with my family. 

Read more about therapies for ALGS

Next, I had to retrain my way of thinking. I am a planner and need to know what is coming. I had to learn this life was not something I could plan for. All I could do was take it day by day and nothing more. If one day felt overwhelming, then it was an hour-by-hour focus. I had to learn to trust my son’s medical team. I knew the team would do everything it could to help him survive. I learned it was critical to have an essential. 

Lastly, I started to find hobbies.  I love to read, so I started to find faith-based books about fear and anxiety. One of my favorite books, which was gifted to me by my mother-in-law, is Restore the Roar, by Pat and Karen Schatzline. This book helped get me through my peak anxiety as we headed toward an inevitable transplant. I also started to go to the gym. I always enjoyed working out but setting specific goals gave me something to focus on. It is therapy for me to get out of the house, go somewhere with no distractions, and listen to music in my headphones.

When I start to feel overwhelmed, I remind myself of all of the different coping techniques I’ve learned. I like to tell people I compare this journey to climbing a mountain. You must take it in increments. As you climb you become exhausted and feel like it won’t end, but you finally make it to a beautiful overlook where life is great for a while.  Then it’s time to climb again. But if you focus on your pace and the support you have, you can get to the next beautiful place.