Today my family and I went to buy some apples at the local apple orchard. On first glance I’m sure we looked like just any other suburban family out on a beautiful fall Sunday.
Unless you were to hear our daughter roaring.
Yes, today Lizzy has decided that she is a tiger. She was also cracking herself up. We are not quite sure what was making her laugh but when she is giggling non stop it’s pretty hard not to laugh along with her.
Life with our Lizzy is a trip alright. Some days we can go with it and laugh at her unique way of dealing with the world. Today was one of those days.
Other times I get frustrated that I can’t reach her. I get angry that her brain is damaged enough for five MRI’s to pick it easily up yet not one specialist has ever been able to tell us what it actually is. There is no blueprint to treat it. No ribbon for us to wear. We just treat it symptom by symptom.
Today was one of those days too.
As we were walking with our Tiger Girl I noticed that our two sons were smiling at her. My husband was enjoying his time with his family not minding that his daughter was roaring. I was more concerned with picking out the right apples to make a pie with than with my daughters unconventional behavior.
We have all developed a quiet acceptance of the situation we are in. Lizzy is Lizzy. Impossible to define. Impossible not to love.
I started to think about this essay that I wrote back in January and it seemed so fitting to re-visit it today.
This piece was originally titled ” Life Lessons,” and was published on the dishwasher January 1, 2012:
When I was a young girl, one of my favorite places was the woods in my back yard. Although, the word “woods” might have been a bit of a stretch.
We lived in a small Cape Cod in Levittown, New York. The woods probably weren’t much more than four or five trees in a row behind the fence that backed Hempstead Turnpike. It wasn’t exactly Little House on the Prairie, but for a little girl of six or seven, it may as well have been.
In my woods, I was free to go off into the wonderful and exciting adventures I would imagine without anyone to interrupt or make fun of my daydreaming.
I could pretend to be married with my own family. And for the record, I was the kind of mom who let her child do whatever she wanted to do and did not make her share with her sisters or clean her room. I would let her have 1million Barbies, too. Maybe even a dream house.
Or I could be a famous singer living in Manhattan, wearing beautiful clothes just like Barbie did, going to exciting parties, and travelling to far-off exotic places.
Sometimes I would just talk to the trees and grass and flowers and wonder what it was like to grow in the ground or be a leaf on the tallest tree.
I lived in my head a lot. I would go off whenever I wanted to escape, whether or not I could physically leave.
I was the kind of child that preferred to be alone. I was happier in a world I could create and control.
As I got older and realized that being in my own world made me different and sometimes the target of ridicule, I realized I had to choose. I left the world of make-believe. My goal in life became to fit in and look “normal.”
It was not easy. I really liked my own world, but I knew I could not live in my head and fit in with the cool people, if I continued to live there. I made a conscious effort to stay in the here and now and live in the real world.
Blending into the crowd was my main objective. Creativity and individuality became something I actively shunned. I wanted to be like everyone else.
My “odd” mind that saw things differently and went in directions that others didn’t was a source of embarrassment and shame.
I desperately wanted to be like the girls who didn’t have dyslexia and could go to class without getting lost, or read without flipping letters and words. I wanted to comb my straight hair in the mirror and put on my lip gloss as I chatted easily about boys with my friends.
And, I succeeded. By the time I got to high school I reserved my creativity for acting class and even then was careful how much of that side of me I revealed.
I may not have been exactly the most popular girl, but I was happy to hang out with my choir friends and managed to look pretty much like any other girl in my high school.
As I got older and left acting for the joys of eating and paying my own bills, I started to blend in more and more with the other young women who lived in the City. I was content to sit in an audience and let others perform.
I was thinking of this the other day as I was walking out of a mall with my daughter. Lizzy was wearing her new flower-adorned fairy crown and flower headband. She held her Disney Princess flower wand and happily walked a few paces ahead of me, clearly in her own world.
She would have put on her new fairy wings and the three princess dresses she just bought, too, if I wasn’t such a mean mother and made her wait until we got home.
If Lizzy was just a small girl of five or six, this may just go unnoticed or looked upon as something cute. But Lizzy is days away from her 10th birthday and could easily pass for 13. She is tall and stunning and would draw looks just because of this, but her need to be anywhere but the real world paired with her developmental delays and speech difficulties draws people’s attention whenever we’re in public.
As I was walking out of the mall with my beautiful enigma and my own mother I couldn’t help but see the irony.
The girl who so desperately wanted to live in a world of her own but chose the real world because of her equally desperate need to fit in gave birth to a daughter who because of her yet-to-be diagnosed neurological disorder was so clearly entrenched in her own space and didn’t care who knew it.
I wasn’t sure whether to laugh or cry.
At that moment I imagined Lizzy as a yet-to-be born angel looking over the world with God to pick her mother.
There are millions of women who are comfortable nonconformists and embrace their originality. Instead she chose me–a woman who for years tried and succeeded to hide her creative soul.
I always thought God had a sense of humor. I know Lizzy does.
Lizzy’s challenges are many and any parent would feel overwhelmed at times and wonder why their child had to endure all that my daughter does.
I hate to admit it, but for the past few weeks as she has gone through an exceptionally manic period, I have felt sorry for myself. Why me? Why her?
It is not uncommon for people to tell a parent of a special needs child that God picks special people for special children. I have even gotten the “You must be a saint” comment more than once.
Somehow when we look at children with special needs, we cast the parent as a hero or someone who is saving their poor disabled child. In reality, Lizzy is saving me.
Lizzy shows me everyday that it’s OK to be who you are. If you want to wear three crowns and six dresses, so be it. I talk in funny voices and use the creativity I was born with in order to communicate with her. I laugh a lot.
I sing her songs and she begs for more. I drape a piece of fabric on her head and declare her a bride, and she runs to the mirror to admire herself. I play with dolls or listen to her play with spoons or pencils and see myself as I once did.
I’m beginning to see the wisdom of why I was chosen to guide Lizzy in this lifetime. Who better to help and understand a child who’s mind can’t help but live elsewhere than a person who has intimate knowledge of that world?
And who better to help a mother who was never comfortable with her own creativity find it again than a little girl who can’t help but live in a fantasy world?
Thank you so much for your constant support of me and my dishwasher! Don’t forget to stop by Bonbon Break this week. Our 9th issue will be out tomorrow, September 17, and it’s a great one! Have a wonderful week.