The Power of Mentorship

One of the most powerful things about the AS Community is the willingness to help each other. For example, Maddie’s diagnosis was on December 3rd. By Christmas time, we had spoken to three separate families and we received packages with various items from another three families. It seems like a family is always there to help.

Last Sunday, we got together with a family in the area who has a child with AS for dinner. Since I did not ask them if they wanted to be a part of the blog, I will omit any names. Their child is older than our Maddie. Being with that family was a glimpse into what the future might look like for us.

This family has multiple children. Their oldest is a child with AS. I watched as these siblings interacted. Their younger children were very cognizant of their sibling’s diagnosis. They were very helpful with little anecdotes of how their sibling sees the world. However, they did not use kid gloves with their AS sibling. I watched as they ran around and played.

Nicole and I were able to share Maddie’s story with this family. This family shared their Angel’s story. They told us the roadblocks they faced. They shared the triumphs. Their goals in the beginning are a lot like our goals for our little one. It was amazing to see this AS child thriving.

Looking towards the future for Maddie has always been a little murky. Obviously each child is different, and Maddie’s symptoms might present differently. It was a breath of fresh air to see what growing up with this syndrome looks like. It’s not the stark difference that I thought.

When Nicole and I left, I was re-energized. The countless therapy appointments, the countless specialists, the countless what ifs can weigh heavy some days. What I saw that day was what the power of love looks like. I saw a child that had an amazing personality. I saw what an important role this child held in their family.

Do I know if Maddie will ever walk? Do I know if Maddie will ever talk? Do I know what this all will look like? The obvious answer is no. After that visit, I do know it will be okay. I do know that by inviting us into their home, we were able to see that things aren’t all that different. I do know that the mentorship that they provided has made a huge difference in our day to day. That’s what the Angelman Syndrome Community is all about.

-Written by Adam Birchmeier