The 5%

I mentioned in my last post that 95% of the time, I don’t think about Audrey’s disabilities. The 5% hurts. It hurts me more for Ella.

Ella has asked me if she can have a baby brother. I don’t know if she just wants another man in the house or if she wants a “normal” sibling. Ella is starting to understand that she and Audrey will never have a normal relationship. Last week she said, “I wish I could talk to my sister.” Audrey knows a few signs, and Ella is probably the best signer in the family, but I know what Ella meant. She sees how her friends interact with their siblings and wonders why she can’t do the same thing with Audrey. Sometimes you want things to be normal, but normal isn’t in the cards for us.

It’s just a cruelty of life that Ella is the most social kid I have ever met, and she has a sister who cannot communicate with her. Ella frequently walks through the house and asks, “Will someone play with me?” when Audrey is sitting in the next room.

I don’t know how to explain to a seven-year-old that her life will never be normal by society’s definition.

Ella is a great big sister to Audrey. Whenever she meets a stranger, the first thing she always mentions is, “I have a sister, and her name is Audrey.” She is everything you would want a big sister to be – protective, supportive, compassionate, loving, and understanding. I hope that never changes because reality is not lost on me. I had kids later in life, and Audrey will probably need someone to take care of her for most of her adult life after her parents are gone.

Ella is also too young to understand how living with Audrey affects her. Living with adversity makes you stronger. Being Audrey’s Dad has made me a better person. I’ve grown more as a person in the last five years than in the previous 47. Ella started this journey at age 2 and is already a better person than me. I can’t imagine how much better of a person she will be when she is my age.

One time, I asked her what she wanted to be when she grew up. She said, “I want to be an engineer.”

I was a little surprised because she doesn’t have the stereotypical personality of an engineer, but I replied, “That’s great. Why do you want to be an engineer?”

“Because I want to build things to help people like Audrey.”

You probably don’t get an answer like that when you are a member of a normal family.

Last week, Audrey fell and hurt her ankle. Later that day, Ella asked me to come into Audrey’s room. I saw Audrey’s room in a state of cleanliness that I had never seen before. There are usually piles of children’s books and stuffed animals on the floor, but it was immaculate. Ella said, “I cleaned Audrey’s room because she hurt her ankle, and I wanted to make it easier for her to walk so she doesn’t get hurt again. (Note: Ella has never voluntarily cleaned her own room, much less someone else’s). The love she has for her little sister is like nothing I have ever seen.

They do not have a typical sister relationship. They have something more special than typical.

P.S. I have taken thousands of pictures of my children, but this is my favorite. I use it as the wallpaper on my computer. No matter how bad things get at work, I can shut down all my windows and be reminded that nothing can ever minimize the joy these two bring me.