The First Year

On May 24, 2022, we received John’s diagnosis of GATAD2B, we received little to no information from the Genetics doctor on his disorder and we found ourselves at a loss for what John's future looked like. Our healthcare team and I sprung into action the following months researching and making a game plan that made sense for our little guy. Our therapist and specialized doctors made sure to provide us with all the support we needed. I am so grateful for this because I have spoken to many families and that is not always the case. However, our team at CSH and our Early Intervention team has always cared and supported us in an extraordinary way.

A few months later we were able to meet other families via conferences and exchange experiences and stories. We felt seen and understood with the other Gand families. It felt so good to not need to explain John's diagnosis but just being heard and understood was one of the most comforting experiences.

In the fall, we had the amazing gift of our community come together with NBC's George to the rescue and finish our basement. We had such an amazing group of contractors just come together and finalize this crucial part of our home while we navigated the very complex challenges of John's journey.

In the first year, I think we are still learning and processing all this new information. John is still very young, so his slow progress is more forgiving to those who are not in the disability community. However, it has been exhausting and isolating at times. He does not like using his equipment and is very dependent on me and that can be exhausting in itself day to day. There is also the feeding factor and him being non verbal, those things present there own challenges. There are safety challenges and also family dynamic challenges. We are navigating dividing our attention between our two children. Mean while, we still have work, school, house and everything in between to take care of. We are learning what John can handle and what does not work for him. We faced different situations that were eye opening in how our society is not inclusive and how we still need to advocate for some really basic things. I love advocating but it can be such a pressure while figuring all this out. However, we are the only ones advocating for our own, so advocate we must.

On a good note, I do have to say even with his brain injury my husband has been such a champion and incredible partner and that has been such a crucial part of why I can advocate for John. While my husband holds things together on one end I am able to work on something else. We have learned to be patient with each other and listen to each other when needed. I know it can be more tiring and mentally exhausting for him to grasp it all but he has been my fortress in the process.

The truth is nothing can prepare you for parenting, much less parenting a child with a disability. I once said “it’s not the end of a journey but it is the reroute to a new journey". One I am honored to be part of, I have met the most incredible people and have had some really great experiences throughout this first year. While learning what the rest of our lives might be like, we had support and community. Nobody can take away the hard parts but they have given us amazing moments to hold onto forever.I hope you will join me as I continue to share our journey with our Gand Babe. I only look forward to the progress we can make, however that looks like.