Sunday, March 18, 2007

What We Need

"Fair is not getting what you want. It's getting what you need."

A lesson I repeat to my children daily.

My lovely lady with autism was diagnosed eight years ago. It seems like yesterday. It seems like forever.

I expect my inital reaction was pretty typical. I read everything I could read. I went to support groups. I designed therapy drills and exercises. I focused on treatment and preschool and supplements and therapy and what am I going to do for her. Immersing ourselves in the doing helps block out the fear and gives us some illusion of control. At least it did for me. Fear of the future, fear of the unknown, fear of the "what-ifs," just plain being scared for my baby girl.

We finally got to the point, though, where everything was in place. She had a great treatment program at school. We had an established play therapy program at home, with wonderful, loving tutors. I had returned to school, a Master's program in Early Intervention, special education for infants, toddlers and preschoolers.

That's when I started to ponder....What does this mean for my life? Why me? Not in a whiny poor-me way; rather, "Why me" in a soul-searching, why do these things happen kind of way. God doesn't usually write us letters to explain, or send enlightenment bolting down out of the blue. Most of the time we are left to search and ponder and pray and try to find the path because finding our way is an important part of the journey.

Once in a while, though, we see a signpost. We're in the right place at the right time, and the message is clear.

I was sitting in a class. Children and Families, I think it was called. We discussed issues commonly faced by families of children with disabilities, addressed cultural issues, learned about working with different kinds of families. We had a guest speaker that day, a Native American woman talking about her tribal culture and her experiences in the last of the reservation boarding schools. (A fascinating topic on its own, though not exactly a stellar time in U.S. history. You can read more about it here or here.) During the question-and-answer session, someone asked her, "What were the views of Native Americans toward children with disabilities?" Her reply: "Some tribes believed that a child with a disability was a curse, or that the family had done wrong. But my tribe treasured children with disabilities. They believed that a family was given a child with a disability, not as a curse, but as a gift because that child had something, some quality, that the family needed."


I felt lightheaded. I almost started sobbing right there in class. I still cry when I remember.

Now I believe that the message was so overwhelming not because it was something brand new, but because she spoke what was already hidden in my heart. I needed the flash of lightning to light the signpost that was already standing on the path.

I carry my knowledge in my heart, even on the most difficult of days. This child, her presence in my life, our life together and the challenges we face, has given me gifts that cannot be measured. Compassion and patience. A challenging life that requires my active participation every single day. Appreciation of even the smallest steps. Grace. Boundless love. Knowledge that when I get to the very edge, to my limit, I can stretch just a little further. Friendships. Knowing that even when I stumble and fall-- when I yell, when I cry, when I whine-- I will eventually pick myself up and keep walking.


It may not be what I want. Even though I wouldn't change a thing, even though I've accepted this gift wholeheartedly, I would not have freely chosen this life for myself. It is a gift chosen for me.

Sometimes you just have to close your eyes, open your heart and trust: I've been given what I need.


Wendy said...

Thank you for an incredibly touching essay that made my throat ache. As a physical therapist who volunteers part of my time at a therapeutic horseback riding ranch for disabled children (including kids with autism), I already know the tremendous gift these children are...but you have put it into words. Beautifully done.

nina said...

This is a wonderful expression of love and understanding the self. I will keep your thoughts close as we venture into the frightening unknown of our second adoption.