In 2008, we moved to the Austin area with our almost 2-year-old daughter, Casey. After we got settled, we had a nurse come in once a week to get Casey to appointments and help out with the many things she needed. Once the nurse was trained, and I had a little bit of time for myself, I wanted to give back. I wanted to help other families like mine—help in the way I needed but wasn’t able to find.
Texas Parent to Parent was hosting a "Parent Mentor Training" workshop and I signed up. I was so excited. I planned to go through the training and start helping families do all kinds of things.
Oh my goodness, I was so naïve.
The training started with each of us (I think there were 8 in the group) going around and telling our story. When it was my turn, I lost it. This was the first time I was in a room with other mothers who were sharing stories similar to mine. I was still struggling with Post Traumatic Stress Syndrome (PTSD), which I didn’t know at the time I had. As I told my story—Casey’s story—it was as if I was reliving every detail.
I really wanted to be a parent mentor and help other families. But instead, when I left that training, I had my own mentor. That day was life-changing for me. I gained an extended family who I could reach out to with questions or to just talk about my worries or struggles with. People who really understood.
I had, and still have, great friends and family who did their best to support me as I struggled to adjust to life as a medical mom. But none of them really understood what I was feeling. Until I met other moms like me, I felt very isolated and alone.
Having people who really understand you, who have walked a mile in your shoes, the ones who will sit and just cry with you if that’s what you need. These people play such an important role in our lives.
I did eventually get to the point where I was able to be a parent mentor. One of the things I stress to new families I meet is the importance of peer support. It’s one of those things that until you have it, you don’t realize how necessary it is.
If you are a new parent and have yet to connect with other parents like yourself, it’s never too late. Please call Texas Parent to Parent (or any support organization). You will not regret it.
Connect with other parents. It is so important. It can change your life.
Making the decision to use medication to help manage our child’s disabilities was a complex decision. A hard decision to make. There are advantages and risks. For our son, it has made a huge difference.