Saturday, December 10, 2011

Moving Forward

Buddha and Angel always wake up happy and excited to start the day.  Angel will rush over to me as I step out of bed, her tail wagging madly, knocking against the wall.  I reach down to pet her.  When she’s got this much energy it’s more like a two-handed puppy rub.  Only that will satisfy her happiness to see me and greet me.  In turn I always smile.  Her love and happiness rub off on me.  For that I am very grateful to her.  She has given us so many smiles, laughs and moments of wonder since we got her for Anaya in August.  I’ve been asked if Angel misses Anaya.  I’d have to say that she knows that Anaya is not here, but other than that not much has changed.  Both of the dogs still play, eat, nap and show affection.  If anything Angel seems to have latched on to Solara. 

Yesterday evening I sat on the couch, cuddled in a blanket, talking with my friend Keri.  I looked over by the Christmas tree and Solara was wrapping a gift for her friend.  Angel sat next to her, absolutely absorbed in watching Solara wrap the paper around the toy.  Each time she would reach for tape or scissors, Angel’s gaze would follow, her whole head moving.  There is something very special about her.  I’d have to say that Angel’s favorite thing is young girl toddlers.  Every time we see a little girl Angel will rush over as fast as she can and start licking their face.  Now this is not always received well.  I’ve had to start being very vigilant to ensure no one gets scared or gets  knocked over.  Her tail wags so hard that her whole butt wags back and forth.  In this way I know that she remembers Anaya.  She used to gently get up on the couch next to her and lick her face.  Anaya was always interested in puppy kisses.  Her eyes would open wide and she would wonder what was going on.  I know she was smiling inside.  I would put her hands on Angel’s soft furry ears and she would grip tight.  Her eyes would move in her expression of wonder and she would make her little noises.

I miss Anaya’s little noises.

People ask me how I’m doing.  They are afraid to bring their children over to visit in case it makes me sad.  The truth is that healthy children make me happy.  Nothing compares to Anaya.  Let me re-phrase that.  Healthy children do not remind me of Anaya.  I’ve already grieved the loss of her health.  Healthy children used to make me sad about a year ago or more.  But I moved passed it when I accepted Anaya for who she was and what her purpose was and is.  My heart tugs towards other children with this disease.  I just want to love them and kiss them and cuddle them…but I know that even that will not compare to Anaya.  She was my little love, and always will be.

People also comment on my strength and my ability to celebrate her life, and death.  To this I can only say:

I love her as much now as I did before.  Yes I miss her being here.  I miss the wonderfulness of her presence.  But when I reach inside my heart I can feel our love for each other and I know that she lives on.  I believe she still exists.  I believe it SO firmly that my sadness is lessened.  I know how hard it was for her to live in her body.  She couldn’t move, couldn’t play, couldn’t make words.  She didn’t get to enjoy eating by mouth and the tastes that we gave her often made her choke.  The suctioning of her mouth and throat was a constant irritation and often caused her to gag.  She even had trouble swallowing, and at the end she couldn’t breathe. It was painful.  It hurt her.  I know now that the pain face that she was making was actually a brain-stem response that was a survival mechanism to try to get more air into her lungs.  She would take a deep deep breath and then make that face and hold it, then she would let the air out.  Taking those deep breaths hurt.  They really really hurt.

 Anaya needed to die.  She needed to move on.  She deserved to be allowed to go. 
Keeping her alive longer, on life supports, would have been selfish and would not have been the loving thing for us to do for her.

True love does not have entrapments.  True love is not desperate.  True love is to give to your love what they need.  There is a difference between attachment and love.  When I set her free, when WE set her free, we let go of our attachment and gave her our pure love.  That love surrounded her and helped her to cross the boundary of life and death with honor.  That is how much I love her.  I love her so much that I could not have done anything else.

In this way my grief seems to be different from others.  I view her passing as her greatest achievement.  She was so brave and her life was so vibrant.  Her spirit is forever and she has changed the lives of thousands.  Yes, sometimes my longing for her physical presence is great.  That is my attachment to her, coming back up.  In these moments I break down and sob my heart out – but it certainly isn’t all the time.  I keep going because my purpose isn’t finished yet.  When it’s done, I will die too and join Anaya and the countless other eternal souls who exist beyond the borders of life on this level (or plane) of existence.  Death isn’t an ending.  When you truly believe that there isn’t too much to be sad about.  Except of course- missing them.  It’s like someone you love has moved to a new country and you know you won’t see them again for a very long time.  It’s sad and it changes your life.  But you know that it is right for that person and you wish them the best and look forward to hearing about their adventures in the future.

I could CHOOSE to be a complete mess.  I could CHOOSE to give in to my attachment and feel her death as my supreme LOSS.  But I CHOOSE not to.  It is her gain.  I’m going to give as much light and love as I can.  This is why I still get to see her in my dreams.  She is my teacher.  She is not lost, only changed.

Did you know that Heaven is a place of rainbows?  She told me that God exists in a state of millions of colours and can take any form.  God delights in rainbows.  I also found out that the more positivity you put into a situation (positive energy) the more likely God is to help you move forward in any of your endeavours.  Have you ever had one of those days where you felt good and everything just kept clicking into place?  Like you’d think of a friend and then run into them?  Or you needed something and found it, etc.  When reality behaves like that it is because your flow of energy is in sync with God.  It happens to children ALL the time.

And Jesus said “Be like the little children.”
Enlightened people all over the world know that what we think, we become.  Choose your thoughts wisely.  You are not your thoughts.  You are the being having thoughts.  Each situation has many possibilities.  Allow yourself to view them all before you choose your path.  You will know you are on the right path when things begin to happen easily and with synchronicity.  Just like in Peter Pan the secret to finding the path in any situation is to “think happy thoughts”.  Not just any happy thought.  You have to find the positive part of your current situation and focus on expanding it until there is no room for the negative. 

I myself have been idle the past week.  Many people push their expectations on me without realizing it. They expect me to be depressed, grieving, hopeless and lost.  Every person’s thoughts and feelings have power.  I am very empathic and can often feel other people’s emotions.  I’ve needed to sit with myself and look at my thoughts.  Am I depressed?  Why am I not more sad?  Is it wrong that I am not a mess?  Is it wrong that I feel as though I can go on?  I’ve been questioning myself, wondering if it is right to allow myself to be happy and go on with life.  Is it right to have energy and be OK?  I question myself because I value my friends.  I value their outlooks and opinions.  When they say that “they don’t know how I do it” I wonder if I’m doing something wrong.

Today I woke up and realized that it’s time to end my mulling over these questions.  I’ve already told you how I feel about Anaya’s death.  She is FREE!  I miss her.  My life is changed, but it continues.  It is time to continue forth with positivity and allow my path to be shown to me.

I am the mother to an amazing little girl named Solara.  I delight in her.

I’m going to make a huge difference in the lives of unborn babies with Krabbe Leukodystrophy.  I’m going to start by making a series of you-tube videos about the disease.

I’m going to earn a living by helping others.  I will be working with FundRazr ( ) as a fundraising educator and consultant. Fundrazr is a Facebook application that works directly with PayPal to help people access their network of friends and acquaintances to raise money for a personal or charitable cause. I will be teaching other people how to use this social media tool as a way for them to get the help they need, when they need it. If you want to raise money for a personal cause please contact me at and I will help you.  I have a lot of personal experience using this tool for health related fundraising. We raised money for Anaya, and now it’s helping to pay for the medical costs of her final days.  (She was in ICU and airlifted from Oregon to BC).

I’m going to tirelessly advocate for every child’s right to be tested for treatable diseases at birth.  We are forming a non-profit called “Anaya’s Angels” to this effect.

I’m going to reach as many people as I can and educate them not only about newborn screening, but also about what I’ve learned about the progression of this disease from a medical standpoint, as well as caring for a child with severe disability.

I’m going to write and speak about the lessons that I’ve learned and continue to learn from my little love, my teacher.  She is the one who showed me the path.  I will try to show the path to others.

Love is the way.
That is all.


  1. You said so many things that are so true!!!
    I really am inspired by your thoughts thank you for sharing them with all of us! ((((Hugs)))♥

  2. You are an amazing woman and I love your perspective. You are so right about the perspective, it is all hoe you look at it. Sending you and your family ton of love and bright light. the rainbows are always there

  3. Wonderfully said!! Enjoy life she would want you to!! Xoxo

  4. Hi Camara,
    I've had a similar experience with my Dad going to the other side. He was in hospital my whole life with an unknown Brain Injury and no one could understand that i was happy for him when he left...rainbows in december and huge flocks of Birds were around ALOT. I knew he was then free to be able to do all the things he couldn't do here. He's having a blast!

  5. Incredible! Well spoken thoughts...
    I admire the outlook you are CHOOSING to have...We all know Anaya would want you to continue being strength for others, helping, loving...TEACHING! An amazing inspiration you are Camara. I am so moved by your blog, by the power of your words.
    I will continue to follow your journey, xx

  6. That's a great way to view it x never really thought of it that way xxx glad you are doing well! And on a side note, I dreamed of a spectacular rainbow the other night. And my daughter (who has just learnt to sit) was playing at the end of it. There was an angel child with golden hair playing with her. I'd like to think that was you sweet Anaya xxxx Happy Christmas xx

  7. Simply beautiful! You are an enlightened soul.

  8. you inspire me so much, i dont think you even know. BTW, have you all decided when/where youll be scattering? We donated to that fundrazer :)
    Just curious.

  9. I just found your blog through a friend and am so incredibly glad I did. Your daughter and your love for her is so incredibly inspiring. I am pregnant with my second daughter and the name we chose for her is Anaya. Now I know that it is a name that is blessed. I am sure you know the common meaning for the name is 'God answered'. I believe that God did answer. He set her free from the pain and suffering of a terrible disease. While I pray my child will be healthy I know that giving her this name will make her strong and resilient like your Anaya. May you and your family be blessed with peace and love this Christmas. And a safe and healthy new year.

  10. Hi, i have a store with handknit mittens, but i want to start a new line so i would like to donate some of the older mittens, would you be interested if you will be doing an auction or some other type of fundraising, something in the future?

  11. Your posts have been so inspiring to me over the past year. You have been a wise,gentle teacher. Thank You for your honesty and beautiful words. I hope to one day meet you in person. I lived in Nelson for 7 years and currently (for the past 6 years) now live in Vancouver. I have a almost 5 year old and an 8 week old. I wanted to have my newborn screened for Krabbe Leukodystrophy but was told it was unnecessary and they don't have screening for it. I wished I would have done more research into the matter. I applaud you in your efforts to raise awareness. I shared your story with everyone in my family, and the knowledge is moving on. Thank You Camara. Sending you love and more positivity. xo

  12. your indication of god and positive energy getting threw a situation is amazingly true. so happy you are thinking and feeling that way.... i am speechless.... true love does that....

  13. your indication of god and positive energy getting threw a situation is amazingly true. so happy you are thinking and feeling that way.... i am speechless.... true love does that....

  14. Camara, thank you! Your strength in your loss helps me get throu my own demons. Your insipring words have made me see the little things i do in my life make the biggest impact on my life (and everyone around me) I tip my hat to you and your strength. I am encouraged by your strength to move forward not only for Anaya, but for Solara, Brent and all the sick babies you are now an advocate for. You Camara i believe are not only an angel yourself, but a hero to many grandmothers, sisters, daughters and mostly mothers. Thank you!
    Much love from my family to yours. And my this be a Christmas filled with love and rainbows!!! P.S. I loved seeing your morning coffee rainbow <3

  15. I also found out that the more positivity you put into a situation (positive energy) the more likely God is to help you move forward in any of your endeavours. When I read this sentence.... my whole body got the tingly good feeling, I have always believed in positive energy having a connection with god :) thank you cammara!


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