Hospitals for us were our second home. We started our journey at Children’s Hospital in Detroit. That is where we received our official diagnosis of autism and epilepsy. I remember meeting many families in the ER and when we stayed overnight in the hospital. Each family had that same look of concern and pain on their face.
Some families were couples and some were single moms like me. The women would all have binders and bags of records, IEP’s, and x-rays you name it. I began to rattle off Sydney’s medications with ease, whenever we met a new doctor.
While waiting in the waiting room some families would talk and share their stories. Secretly I think we were all comparing our children. Or families would remain silent and cry in the corner. I never was the mom that cried in the corner. I may have looked dazed for our first visits but I always had a smile, even if it was fake.
It wasn’t until we started visiting Mott Children’s Hospital in Ann Arbor, that it felt like home. It was our home away from home. There were many nights that Harrison and I would stay with Sydney until ten, drive home and I would go to work the next day. After work we would drive back to Ann Arbor to visit her.
We met some truly amazing “little victors” as they are called. We met wonderful families. Hearing their stories would always make me put our situation into perspective. One day Sydney was having a procedure done and we were waiting in the family waiting room. Harrison was networking and making friends as usual. It didn’t mater if the children were non verbal, or in a wheelchair he wanted to make a friend. He never saw a disability.
While we were waiting I was grading papers to pass the time. A woman sat down next to me and began to talk. She was visibly upset. As much as I needed to grade papers I put them away and we talked for several hours. She explained to me that she was a stay at home mom taking care of her son. But after hearing her story and her next comment my life was forever changed. She said, “Brooke, I wish my son had autism like Sydney.”
At first I just stared at her, not sure how to respond. She hoped that her son would be accepted in school, that he would call her mommy, that he would be loved by his siblings and other family members. Immediately I thanked God for our journey. Yes, it was tough but it could always be tougher. Autism in her eyes would be a walk in the park. For me at the time. Autism was like conquering hell on earth.
That day changed my life, my perspective, my passion and my drive to be an autism advocate.