What the World Needs Now

Today was Bev's final home therapy visit. She left with tears in her eyes. When we said our goodbyes, I believe I hugged her longer than I have hugged anyone outside of my immediate family.

Last year Bev watched me burst into tears and run into the privacy of my bathroom the week we received our diagnosis. I had met her merely days before. At the time, I was in shock and could not make my mind wrap around what was happening to us. I had traveled to the children's hospital after seeing photos on line of babies that looked just like mine and knew in my heart my worst case scenario would soon unfold in front of me like a nightmare. Bev watched it happen with me. She brought a nurse to our house to provide counseling and answer my questions. I vaguely remember the nurse very matter-of-factly stating she had worked with another child with WS in the past and that Erik would be "just fine." Despite the fact she was probably a truly lovely person, I felt like punching her repeatedly in the face and watching her teeth skitter across the coffee table. Unfortunately, Bev was next on my list. After the nurse was only a distant memory, Bev remained assigned to help us in our home and at the early intervention facility over the coming weeks and months. She listened to my concerns and worked with Erik's slowly awakening body and mind for months. Looking back, she has been an essential component of Erik's team and is always genuinely amazed by the progress he has made each and every time she sees him. She has had the privilege of witnessing a relaxed, comedic side of Erik that he keeps hidden while he is at school, and she knows exactly how very special that is. She has been nothing but honest with me, and, as much as I hesitated to open my door and let her into my life at first, I consider her part of our family now. Forever. Today when I automatically suggested she attend Erik's 3rd birthday party in October, she readily accepted.

Watching them play together today was wonderful. She seemed to savor every last second with Erik, tickling him and making him chortle (my favorite laugh of his during which he smiles so hard the tiny points of his incisors show). She gave him a ride around the living room like a pack horse and "flew" him around in her arms, even though the increasing weight of him had the potential to generate horrendous back spasms.

Yes, Erik will be okay out there in the world, but from where I'm standing, it's very difficult to see sometimes. That is, it's hard for me to see until I watch someone he has touched hug him with tears in their eyes as they say goodbye. It's magic moments like these that remind me how incredibly special Erik is and how lucky I am to be his mother. I am on the adventure of a lifetime, and Erik is leading the way. It's scary and dark sometimes, but this is precisely the stuff that makes every painful second worth it.

Bev is retiring as the summer session comes to a close, so as she leaves Erik behind, she is quietly closing the door behind her.

For some very strange reason, the memory of this video from years ago came to me this afternoon. Watching it makes me smile. Today I am thinking that, yes, Erik's behavior may seem bizarre at times, but perhaps he is one person who can offer exactly what the world seems to be lacking big time these days. After all, he certainly has given me that very gift.

I'm so proud of you, Erik.

Keep it up, son.