Having a child with Turner Syndrome (TS) can be challenging. Amy and Chris are the parents of Avary, a wonderful, now four-year-old girl who has TS. They hare long-time advocates for TS awareness, having navigated the stages of diagnosis, finding care, and parenting a child with the condition. This is their final p ost in their series about their and their daughter’s journey. For this post, we asked them to share their lessons learned as parents of a girl with TS.
Please remember that everyone’s experience is unique, so consider your child’s/your individual needs when navigating diagnosis and treatment. This story highlights just one perspective on navigating being parents of a child with TS. Consult with your endocrinologist and other specialists for individual advice and care.
As we have shared in previous posts, learning that our daughter had TS was extremely new to us. We didn’t know anything about TS, and we learned as we went along. What have we learned as we navigated this process? Quite a bit!
You Are Not Alone!
The first lesson we learned as parents was that we are not alone. Joining social media groups and foundations has helped us share our experience, ask questions, find answers, and connect with others. Organizations like the Turner Syndrome Foundation (TSF) have a wealth of resources and options for connecting with others.
Use the Resources Available to You
Second, use the resources available to you: updates and information, ways to advocate, ways to donate and ways to share. Keep an eye on all the up-to-date resources and information. Join the monthly newsletter to keep connected. Join organizations and social media groups. They are great for creating support systems, learning information, and asking those questions you might be afraid to ask.
Be Open to Sharing with Others
Our third lesson learned as parents was to be open and ready to share. This has helped us find doctors, received support from others, feel validated, and feel comfortable. Seek a support system-family, friends, and other families that have a member with TS.
Coordinating Health Care
Last, we learned that not all specialists and doctors are familiar with TS or are specialists in treating it. We have been fortunate in this regard; most of Avary’s specialists are affiliated with each other, and our endocrinologist has several cases of girls with TS. Her doctors all share her chart and make it easier to share information with us.
We have learned many lessons as parents since our daughter was born. And are still learning and remain actively involved in advocating, fundraising, and connecting with others.
Written by mom Amy and edited by TSF volunteer blog post editor and translator Susan Herman.
The Turner Syndrome Foundation is sincerely grateful to Amy and Chris for the wisdom and insights shared during this series. We hope that it is helpful to others in navigating their/their child’s TS condition. Read the entire series in our blog.