I find that I get peace in 6 month increments. I get those blissful 6 months in between Lily's MRIs to live like a normal person--those people I see at the grocery store or at the mall or out to dinner. Those people who are certain in their hearts that their children will survive and outlive them. Those normal people who have never seen or heard the things I've seen or heard--those normal people who can watch a movie with a sick or dying or distressed child and not completely freak out. Those normal people who seem to get peace in limitless increments--or so I assume--because isn't it normal to have unlimited peace just waiting for you?
The thing with normal is, I don't know what normal is. Is normal a messy house or a clean house? Is normal lying awake at night worrying about your kids? Is normal praying and thanking and raging and begging God all at once? Is normal knowing dark, horrible things? Is it normal to want to give your child everything all at once, in case a future does not come? Is it normal to weep when you see a disabled child, one who is in a wheel chair and can't walk or speak and know that you were just millimeters from pushing your own child in that chair? What is normal? It has been so long without normal, that I just can't quite put my finger on it.
Wednesday, January 12, 2011
Monday Lily asked me, "why am I shaky when I wake up? My friends aren't shaky."
It is a question I was completely unprepared to answer.
Lily is shaky when she wakes up because she had brain surgery. She is shaky because the brain surgeon had to go through her cerebellum to remove a 3 cm tumor. The result was a healthy, breathing Lily with ataxia, a condition that affects her balance and often, makes her entire body tremble after a deep rest. But I have no idea why she had to have a brain tumor. It is a question I cannot answer.
When Lily was 2, I taught her to wake up her muscles every morning with yoga and massage. We made it fun and routine and she never noticed that others were not shaky. But now she is nearly 5 and her body, which once mine in so many ways, is becoming hers. And Lily, my smart intuitive girl, is starting to notice things.
I never really answered her question. To say something generic like, "everyone is different," is insulting. To say the whole truth, well, I cant even handle it and I really can't answer why Lily had a brain tumor. There is no answer.
So, for now, I told Lily that we are all shaky sometimes. For Lily, it is after a long rest, her body needs to warm up. For some, it is after heavy lifting. For others, it is before a speech. For me, it is those moments when my little girl asks those big questions, those questions I can't answer.
It is that shakiness, the shakiness we all experience, that led me to yoga in the first place. While we shake and tremble and loose our balance, we can find it again--because it is ours. It is Lily's. And that is one thing the brain tumor can't take away.
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Wednesday, January 5, 2011
Unwittingly, I've raised a daughter who thinks everyday is a celebration. When Lily wakes up in the morning, she says, "What are we going to do today? where are we going? I want to be really fancy!"
Somehow, even at 4, Lily knows that each day is a milestone. For Mike and I, it is one more day cancer-free, one more day that signifies that brain tumor is gone. For Lily, it is a party--an adventure.
With everything new thing--I am reminded how close we came to no new things--all these things are bonuses--not rites of passage, like I once believed.
The first day of school is not just a new start--it is a sign that my baby is actually growing up. And there were so many days when I did not know if she would grow up. To keep my hope alive, I used to plan her birthday parties in my head. Her 2nd party, was at home--a cowgirl theme in honor of our time in Texas. The 3rd--a princess party. Her 4th was princess and the frog. Her 5th, would be a blow out, pizza, princesses balloons, everything. Her 6th, perhaps a bowling party or ice skating. Her 10th would be her first sleep over birthday party. When she turned 16, we would throw a bash worthy of MTV. Lily's wedding--well--that would be whatever she wanted, as long as I was there with my best friends and family--all those who watched my baby beat cancer and grow up. I planned all these things--because--well, if I plan it, it will happen. Cancer is no match for my compulsive party planning.
If only it were that simple--plan a party, plan a future and it will come. I know we are so lucky--so blessed--and that sometimes a party can be just a party--sometimes, it can just be the first day of school.