I had a dream the other night that my best friend had a birthday party for her daughter and didn’t invite mine. I woke up grumpy and sad, and it took me about half of the morning to realize the dream was the reason for my grumpiness. Our girls were born 4 months apart and we assumed they were destined to be best friends. However, my daughter Emmaus was born with a genetic disease that has caused her to have a global delay, autism and epilepsy. So while both girls still love each other a great deal, the picture of “best friends” is not quite what we imagined.
After figuring out the root of my mood I picked up the phone and called Emily, my bestie. I told her that it was important to me that we be invited to things like birthday parties. That we might not always come, but that having the option was really important to me. As always, she was gracious and thanked me for letting her know, and she validated that my request was important to her as well.
A week later we got an invite to a cookie party from another dear friend of ours, Sarah. She called me and said that “it just seemed right that myself and Emmaus come if we could.” She had run the idea past Emily and Emily shared my dream with her. On top of that she wanted to know if it would be okay to share a little about Emmaus with the other second grade moms and girls, so they could be prepared and know how to best interact and accommodate a friend like Emmaus. To say I felt loved in those moments is a massive understatement.
Do you remember the first time the isolation set in? For me it was a lovely spring day, years earlier, with some of those same friends. We took our kids to the park. Emmaus and I sat on a blanket, alone, while everyone else played and chatted. I remember realizing that my daughter could not sit up to swing, and she was too big for me to hold, so I could at least go socialize. I felt invisible on that blanket watching the other moms chase their kids around. Did no one realize we couldn’t do the same? Did anyone even care?
This special needs life doesn’t always lend itself to inclusion. Especially in the social arena. But what has changed since that first isolated encounter is me. I have learned to be bold and say “The park isn’t a great option for us, could we (insert activity) instead?” I have learned to host, because often my daughter feels most comfortable at home. I have learned to be brave and attempt an activity knowing full well it might be short lived. And I have learned to be okay with “missing out” because sometimes it is not worth the effort.
My friendships have changed, some have completely dissolved, but being willing to be vulnerable and share our needs even in the arena of friendship has lead to some rich relationships for myself and my daughter.
Written by Laurisa Ballew