In a matter of 36 hours, our seemingly normal life with our 6-month-old son was turned completely upside down. Has your life ever changed in the matter of a weekend?
I remember getting a call from Grandma Jeannie asking me to come home because “something wasn’t quite right.” I rushed home and my son was waking up from a nap. Everything looked normal to me. In a few hours, I witnessed what she was referring to that “wasn’t normal” for a 6-month-old baby. He couldn’t control his head from bobbing up and down and then he’d take a nap. No, this wasn’t normal.
We visited our pediatrician, and she too was able to see these episodes and recognized these as some type of seizure. She checked us into Children’s Hospital. It was here that our lives were forever changed, after all the pokes, tests, scans, and searching our son was diagnosed with Tuberous Sclerosis Complex, a genetic condition that causes non-cancerous tumors to form throughout the body and infantile spasms, which was labeled the most debilitating type of seizures a child could have. Nothing about that weekend in October was normal for us.
There are so many life lessons that have come from those 36 hours and every day before and after this weekend. Four years later our world shifted a little bit with an autism diagnosis. Two younger sisters came into the picture and–as expected–the sibling dynamics are amazing, yet so challenging.
The one thing that stood with us since the beginning is our desire to “Redefine Normal.” Normal is this word that everyone uses, yet no one really knows how to define it. This is normal or that isn’t normal…but compared to what? Where is the actual “normal measuring stick” that serves as the measure of comparison to so many aspects of our lives? No one knows. Having a child with special needs also tends to throw this measuring stick for a curve, not only for us as a family, but for our family, friends, and those around us.
There is no one way to be or do YOUR family! It is so easy to get caught up in looking at other families, children, and lifestyles and thinking that is the way you should be doing it, they are successful, so you will be too right?! No…just as there is no normal measuring stick in life, there is no normal way to do your family! You get to choose, you get to decide, and you get redefine normal in your life in a way that works best for you and–more importantly–that feels right for you!
Thinking back to those 36 hours when our life was turned in a very different direction, I can’t help but be grateful. Sure, our lives aren’t like we had imagined they would be, our lives are so much better than we could have ever have dreamed them to be.
We live in a world where everyone is trying hard to live by society’s definition of normal. This set of expectations provides an example of who we should be as parents, as a family, but I believe in this world “normal” is relative to you and your situation. A world where each family knows their kids. A world where families are choosing to love, embrace, and redefine normal.