This weekend I had the great pleasure of attending the 9th Annual Texas Parent to Parent Conference. The TX P2P conference is attended by families all across Texas to find and share resources. There are also sessions to help families along the journey. I met so many families and really enjoyed the sessions I attended. I was able to attend thanks to U.R. Our Hope. I volunteered to help man the table in the exhibitor room and also be part of a parent panel during one of the sessions and in return my conference fee was taken care of. Truly incredible.
Thursday, I signed up to attend training to become a Parent to Parent Support Volunteer. In the training, I met many other families who came in to this special needs journey quite unexpectedly. As I listened to everyone share their story, it was obvious that although our children all had very different struggles, there were so many similarities in our paths and we were all connected by the love and courage to fight for our children. I’m so excited to officially be a parent support volunteer. I feel as though I have grown so much in the past 2 years and have a wealth of resources available to me and would love to pay it forward and help other parents in any way that I can. I really look forward to receiving parent matches and becoming a mentor to families along the journey on a more personal level.
Thursday evening, I also attended a meeting with Dr. Bruce Cohen where he spoke about Mitochondrial disorders. It was very informative and interesting to hear from one of the experts in the field. Dr. Cohen gave a great overview about what Mitochondrial diseases are and some of the advancements being made in the research to help correctly diagnose so many children.
On Friday, I attended several sessions and also sat on a parent panel in one of the discussions. First, I went to a session on “Grief and Stages of Adaptation” which is a continuation on the training in becoming a parent support volunteer. The session gave really great insight to the process we all go through when learn about our child’s diagnosis. Understanding the research behind the fact that all parents do grieve the loss of the life that might have been while coming to terms and building new dreams in the life that is now before us was so helpful. As we learned about all the stages and processes in which we all go through, I recognized how true they were for my own journey and I know now that I can recognize these stages in the journey of others which will be essential as I help to mentor parents who are new to this journey.
After lunch, I attended the session given by Dr. Mary Elizabeth Parker, medical liaison for U.R. Our Hope. In her session, she talked about the diagnostic journey and resources for obtaining a diagnosis. Myself and one other parent were on her parent panel and told our stories about our children and how we finally came to a proper diagnosis. We were able to share our experience and answer questions for others who are also on the journey. Dr. Parker talked about several cases she has personally worked on and how the healthcare system failed some of her patients which ignited her passion to help other families so that they don’t have to go through that. We had some really great questions and feedback from the families who attended the session, and I’m so proud to have been a part of the discussion. I hope that these families connect with us or find the resources they need to finally attain the peace of mind that we have.
The final session for Friday, was given by our speech therapist and another therapist in Houston about Augmentative Communication. We are so fortunate that our own speech therapist is so well versed in using Aug Comm with patients and can’t wait to get started with Braxton. I was excited to attend to get an overview on what options were available and how to get started with the process. I did learn a few things that I hadn’t already talked to our speech therapist about and hope other parents who attended did too!
Friday night, a few of our friends of U.R. Our Hope went out for dinner to chat and just hang out at a local restaurant. It’s always nice to attend these meetings and talk with other parents about their experiences.
Saturday was a short day for me. I helped to cover our table in the Exhibitor room while Dr. Parker held another session about Mitochondrial disease and Autism. I’m sure it was great!
I had to leave at lunch to help Joseph DJ a wedding out of town. Needless to say, it was a very long couple of days for me! But it was so rewarding! I was able to make a lot of new connections with other resources and other families who are also on the journey. I definitely plan to make this conference each year! I’m so thankful to have been a part of it this year and look forward to the new opportunities that have arisen from participating.