Sunday, July 10, 2011
Often I look around the world and I see dispair and unhappiness. Mostly it seems to be caused by people's fear, greed and percieved inadequacies. By that I mean that from children to adulthood we are taught that we are not good enough unless we have the right clothing, the right friends, get the right grades, buy the right vehicle, the right house, get the right job, have lots of money and "Get Happy." Our entire culture is based on people buying items that are not nessesary. Extravagent homes, luxury vehicles, perfect hair. The list goes on. I call it the "Rat Race". People racing around trying to find the thing that will make them happy. Happiness cannot be bought, and we own our possessions about as much as an ant owns it's anthill. Our lives are ephemeral and only our spirits will go on. How much time have you spent with your soul lately?
It's funny that I'm the one speaking about happiness. I'm not always happy. I am known to be quite depressed at times, irrational, moody and stubborn. I too want the perfect house, the perfect job, the perfect life. It wasn't until Anaya was diagnosed that I was able to give in to another part of me that just wanted to be me and say "nothing else matters". But I go through cycles. Ups and downs. Sometimes I wish I could have everything. Sometimes I want to live like a hermit in a cabin in the woods. It's easy to get lost in the material world. The Tibetan Buddists call it "Samsara." They believe the point of living our lives is to attempt to enlighten ourselves beyond the ego of our minds, beyond our fears, to realize that we are all swimming in Samsara and that only our souls truly matter, and that death is the highest point of our lives.
Anaya brings me this reality daily. The truth about life. The truth about what really matters. Solara is coming back to visit tomorrow. I am so excited to see her. I have missed her bright cheery smile and her sweet hugs. I feel sometimes that I have failed her. That in my being unable to care for her while attempting to care for Anaya and myself I have proven myself a bad mother. I know there is no truth in that. I know that I've done what is best by her. Making certain that she gets what she needs no matter how it might make me look to other people. We are so fortunate to have each other. To share the love of family. I know two mothers who are lonely tonight. Both of them lost their daughters. One a few months back, one last week. Both to Leukodystrophy.
Elaina "LanyBug" was a beautiful child full of smiles. She brought the reality of love and the truth and light of life to her family. When she passed they released balloons into the sky to symbolize her journey to heaven and her freedom in flight. Anaya and I released a balloon for Lany too. We wrote on it "We Love You Lany!" and sent it up into the sky. As I held Anaya and watched it fly away, on one of the hottest days of the summer so far, into a clear blue sky, I felt peace. I know that one day I'll be sending my balloon up to Anaya, and I hope others will for her as well.
I had a facebook chat with Lany's mother Gabi the other day. She says the house is so silent, so empty. That she can't sleep at night. My heart aches for her. I can only imagine what it will be like. I try not to think about it. I don't know how I will manage when the time comes. I like to think that if I spend each day living life to it's fullest with my little girl, I will be happy for her when she graduates from this life. That it will bring me to another level of my life experience. But I cannot imagine my life without her. Will the colors of the world fade to gray? Will my heart echo in the stillness that is a cavern of grief? I cannot know. I do know that when my mom died my entire world changed and my life has never been the same.
I used to write poetry that was darn right dark and dismal. As a teenager I had given up on life at home. My parents had divorced when I was a child and they had both remarried. My mother had health concerns that were exacerbated by her pack-a-day habit and her alcoholism. I further stressed her by being a depressed and out-of-control teenager. When she died I blamed myself. My grief was the darkest of all. It was laced with guilt.
With Anaya the grief is different. It's like I'm going through it now, while she is still alive. But there is no guilt. No remorse that I could have done something different. We tried everything and we let go. Now we just love her and give her the best we can everyday. And to Anaya the best is not a fancy car, a fancy house, a diamond ring or a dog in a purse. The best is a snuggle with her mama, a walk with her papa, feeling the fur of a baby puppy and smelling the lavender, the roses, the lilacs....
Today Anaya was so beautiful. Brent took care of her while I worked on computer stuff. He dressed her in this lovely pink and brown dress, did her hair in pigtails, and took care of her all day. We have had no nursing staff this weekend. Our main nurse is at her daughters wedding and our other nurse was too tired to come in on Saturday. I'm very grateful that Brent was able to be with Anaya and I this weekend. He was very helpful and I couldn't have managed without him.
Little Love, Little Love
I see your fat pink lips
little girl lips...
Little Love, Little Love
I feel your soft skin,
baby smooth skin.
Little Love, Little Love
I smell your clean hair
Angel silk hair.
Every night I hold my baby girl close to my heart. She lays on my chest, it's her favorite spot. She falls fast asleep and our hearts find a rhythm together. In these moments my Samsara (waking dream) falls away and I feel the true meaning of life, again and again. She is my little teacher. My guru. Sweet Saint Anaya. My living miracle.