Sunday, July 10, 2011

Being Camara

 Is there life after death?  I think so.  I believe that our bodies house our souls, our energy, our life-force, a portion of God.  Each day I look at my sweet little love and I know what the meaning of life is.  It's about the journey, about the moment, the experience of emotion, the connection of human souls, the beauty of the earth.  It's about LOVE.

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
Kissable, Kissable
little girl lips...

Little Love, Little Love
I feel your soft skin,
Kissable, Kissable
baby smooth skin.

Little Love, Little Love
I smell your clean hair
Kissable, Kissable
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.


  1. Thank you for sharing your thoughts and for posting the pictures. You're a wonderful mama to both Anaya & Solara. Please don't ever doubt it. Your love for both your daughters is very apparent and whatever you do for them is for their well being. I know Solara will be super excited to see you too. Enjoy the day with her. I'm certain Anaya will be happy to hear, feel and smell her big sister too. Anaya looks incredibly sweet in her dress! I'm glad she's getting some wear out of it. Plus, I love the photo of Anaya on your chest. Nothing like a mama's love for her sweet baby. Wishes for a lovely week ahead. All my love. xoxo


  2. Thank you for this post. My heart is absolutely broken for my dear friends Gabi, and David. I miss Lanybug so very much, and I had only spent about a week with her back in January when my kids and I took a trip to meet her and her family. I agree... only our souls are what matter, and I have found many people throughout my life where I felt like I had known them forever... when I had just met them. My mom said that is because their souls are familiar to you. We are all connected in ways that are so powerful, yet cannot be seen... at least not with our human eyes... but only felt by our hearts... our souls. It was a picture of Elaina that was posted on a Facebook page, she was in a contest for "most adorable big girl", and her smile... made me smile. I made a comment on her picture, and from that moment on Gabi and I became good friends. When I met Elaina and Gabi in person, I felt like I had known them forever. The kids and I took the trip from IL to Virginia for Elaina's service, I wish the trip was to go down and visit with her again... see her smile, to watch as my youngest Billy simply said "cheese" and she smiled every single time.
    The way that you talk about Anaya, reminds me of how Gabi talks about Elaina. You both have this tremendous love for your children, and you both understand how completely blessed you are, despite the Leukodystrophy. On our way home from Virginia my transmission in my car went, and I ended up stranded 360 miles away from home with my kids. At first I was stressed, and just wanted to get home... but then I realized how lucky I was that I got to spend all that time with my kids, all to myself, just hanging out with them and enjoying them in the moment (6 days of moments). Both of your girls are beautiful, and I have kept you in my prayers since I first read Anaya's story, and the journey you are on. This post of yours could not have come at a better time for me, as tonight it has been more emotional for me, and I am just filled with such sadness and heartache, missing a little girl I spent a week with, and my heart hurts so much for her parents, and their whole family. I am blessed to know them, and to be able to call them dear friends of mine. And I will always be grateful to them for inviting me in their lives, and their daughters life. Elaina's smile changed me in so many ways.


  3. she is a miracle. :) and touching our lives so.

    good night to both

    from gaby and santiago

  4. Once again I am brought to tears by your post, thank you for sharing so much of yourself Camara. You are a great mother, don't ever doubt that. Sending you and Anaya much love. <3

  5. I've followed for awhile, but never commented. Your post this morning brought me to tears. Tears for what Anaya and you are living through. Tears for your honesty because it's not something most can do so openly.
    Just know there are plenty of prayers being said for Anaya and you.

  6. Wow Camara, your words are so strong and wise... you are doing an amazing job and I can only imagine what you are going through on a day to day basis! But you are right we spend way too much time thinking and chasing this materialistic life, thank you for bringing me down to earth this morning, and showing me what is important. It's LOVE!!!! XOXOXOX

  7. ~oh i dont know what to say~ ive got another book im going to send you~ be well and enjoy every day even when it seems its all falling down around you! we never expect our children to pass before us~its unrealistic~ but it unfor tunately happens~ i lost my dad at a young age to suicide~so all my life i was worried about my mom dying~ its not a nice thing to grow up with~ then after we had our 2nd daughter i got an epiphany~wow~ ive had 2 children and onw day they are going to die(like we all do) i felt mean and selfish as i brought 2 amazing girls into this world only to die one day~that is why a girlfriend told me she never had chilren she couldnt bare the thought of something happening~ death is something we all face~but its not fair when its a child tht i know~ a couple of books that gave me colice after my first husband died was ~the tibetan book of the dead~and deepak chopra~life after death~im sending the latter to you~ be well and know were all in this together~ hugs and blessings!sharon jesus

  8. You are the strongest woman I know
    Anaya is the wisest child I know
    You have both taught me what it is to truly experience the moment
    I love you both
    You both continue to amaze me

  9. Dear Camara. sometimes I feel like you can see into my soul. I struggle on a daily with the Rat Race you so succintly describe, and the fear of never being a failure, good enough, successful enough, having enough, comparing myself to others... Truly, the one thing that has broken me out of this self defeating thinking in the past few months has been you and Anaya. Knowing you and what a beautiful and strong woman you are has been life changing, as has holding sweet Anaya in my arms and kissing her soft forehead and stoking the softest hair I've ever felt. Your pictures of her loving the summer sun in her mama's arms lifts my heart and brings me to tears. I think you have touched on the essence of our purpose on this earth which at the end of our journey is about spiritual growth and nothing more. The best definition of Love I have ever read is by Scott Peck, in the Road Less Travelled: " I define love thus: "The will to extend one's self for the purpose of nurturing one's own or another's spiritual growth." Your every breath, word, act and thought, you are embodying this defintion, by extending yourself through pain and vulnerability, not only for the nuturing and caring of sweet Anaya and her spirit, but also for all of us who follow and love you. You lay your heart and soul bare when sharing your feelings, fears and experiences, and thus your gift to all of us is spiritual transcendance. I feel that knowing, caring and trying in little ways to help you and Anaya makes me grow as a person, and brings me back to what matters most. Thank you for all that you taught me. And give that sweet squishy baby a kiss for me xoxoxoxox

  10. The depth of your love for your daughter brings tears to my eyes and reminds me to be grateful and thankful towards my children instead of impatient with them. I think Anaya is reaching out to teach all of us to love better, and to reconnect with the world spiritually along with disconnecting from the overwhelming materialism of everything.
    Thank you, little Anaya, for reminding me about what is important.


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