Sunday, March 25, 2012

Miss Anaya

I know that it's been a long time since I've written. Even longer since I've really written something worth reading. Something worth my salt, as it were. I could go on and give you a detailed history of the last few months, but that's not the heart of it. The details are in the moments and the moment is now.

I see her everywhere. I mean that I see her in my imagination. Like when I look at the bathtub. I experience my memories of singing to her in the bath. Holding her while she would float, her head pushing back into my hands, her feet pressed against the end of the tub. When I lay in bed and I cannot sleep I can feel the weight of her head on my chest, where she used to lay.

In the sunlit beauty of a rainbow I see the millions of colors of her beautiful soul and I know she is free. Most of the time my love for her overcomes my grief. But not always.
I was completely in love with her. The love that parents have for their babies. The love that makes you count the fingers and toes multiple times. But it was beyond that. She was more than just a baby. More than my beautiful daughter. She was an angel on earth and when I say she was my greatest teacher I mean it. Completely.

Healing Anaya began as a cause. We wanted to Heal Anaya. We wanted to cure her from her disease, prove the doctors wrong, work miracles. I prayed to every God, screamed for help from the stars, and we tried everything. It was when everything "failed" that I began to learn my lesson.


Anaya was meant to live her life just the way she was. Her purpose for this life was to influence myself, our family and those who came into contact with her. Her essence was pure innocent love. Her body became very weak. She experienced suffering. Struggling to breathe must be one of the worst things that a being can feel. Being in a body without having control - to do something as simple as breathe or swallow - oh my heart hurts from the pain of imagining it and remembering her going through it.

I know that we did the right thing in letting her go when she could no longer breathe on her own. She deserved the freedom, the ability to transform her energy into something new. To rise and expand and be with God, unencumbered by the beautiful fragile shell that was her body.

I would have done a few things differently. I do not live in regret - but I've had a lot of time to thing and there are some things I would do different if there ever was a next time.

I would ask someone to help me thank every single soul who ever helped us. I would make it a priority to let them know how much it meant - and how much it helped.

I would have had my grandparents motorhome inspected before agreeing to take it - and I would not rely on anyone's word who was not an unbiased third party.

I would have flown Brent, Solara, Anaya and Myself south for the winter to spend our final days together in the sun - but I thought this wasn't an option. I thought it was selfish to spend donations that way and impossible to take all of Anaya's equipment etc without a vehicle. We wanted to help others. We wanted to spread the word about newborn screening and about saving beautiful children like Anaya. -

We didn't get very far but I know we had a huge influence on the people we met along the way.

What else would I do differently? I would have taken more videos.

I would not have alienated two of the most important women in my life, that I loved. Anaya's nurses. Difference of opinion happens and I was too hurt and too stubborn to see the other side. But I love them. Joanne and Carol - I love you both.

Those are the only things I would have done differently and there's no point in dwelling on them because they are things that I cannot change. All I can do now is help others - because it makes me feel good. It makes me feel like I am giving back. Paying it forward. I know that my time on earth is short. I know that one day death will come for me and I am ready for it when it happens.- But it's not now!

Anaya taught me to live by putting one foot in front of the other. To go on when there is nothing in sight to go on to. She taught me what faith is, and what it means to be human. Since I've begun living moment to moment things have opened up in the most incredible way. I meet genuinely good people everywhere. I meet people - real deep souls, every day. I know now that we can create our lives to be what we want them to be if we believe that we can. If we have faith and take action and be willing to go too far- just to see how far we can go.

Sure, I didn't live my life with Anaya the way that other people think I should have. But they aren't me, and they didn't live life with Anaya. Let me tell you that I am glad that I had her. I am grateful forever for the experience of being with her just the way she was. It changed me profoundly. I will never be the same.

I see her everywhere. Everywhere. In everything. Sometimes when I am looking into Brent's eyes and I remember her and "see" her in my mind I cannot stop the tears from falling. The sobs from wrenching my heart apart. I sometimes scream in my grief, the same way that I scream in my joy. (What can I say - I'm one of those loud people)

My emotions have always been extreme, since I was a child and my parents divorced and my world came crashing down with the hatred between my two favorite people. My mother and father. But now my emotions are different. I know myself now. I am not as easily caught up in self-pity or doubt. My self esteem has improved and I'm more in love with the world and less attached to it.

Any moment could be my last. That's why I do so much with my life now. Everything is sweeter, more beautiful, more ephemeral. Life is more fun, love is much deeper and challenges are less impossible.

When it's my time I'm going to meet Anaya and I'm going to pick her sweet little self up and spin her around and listen to her giggle. Then I'm going to hear the words "I love you Mama. You did good Mama." and I will smile and say "So did you, Miss Anaya."











28 comments:

  1. This comment has been removed by the author.

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    1. she changed me forever...I haven't come back to this page till now, bitter sweet

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  2. Beautiful, as always. You have no one to answer to, no one to explain your actions to and no one to apologize to. Anaya is free, she is healthy and she is watching over us all. You have been as close to hell as any mortal person can go, and you are still strong, still smiling and still fighting.

    I love you, I love what you have done and how you are changing the world.

    Every time our KiKi sees Anaya's picture she signs baby and then tries to kiss the laptop. Even a little one with all of her problems knows an angel when she sees one.

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    1. Thank you Bea. Please give Kiki a extra special squeeze from me!

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  3. You brought tears to my eyes and a smile to my face. I read Anayas story for a long time, back when there were more good days than bad and I too, miss her. I think of you all often and find your courage to get through this so poignantly, well, truly amazing.

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    1. Amy, I often feel the same way. Tears in my eyes, a smile on my face - with both grief and love in my heart.

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  4. This comment has been removed by a blog administrator.

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    1. It was a duplicate comment...hmmmm...perhaps I should have left it....now it is an empty husk of a comment.

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  5. Beautiful, as always. Tears flowing, as always. <3

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    1. Shannon,
      Thank you for having the strength to read it anyway, even though tears flow, as always.

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  6. As a mother struggling with leuko dystrophy. I want you to know you've inspired me. You've made me smile bc I can't wait to hear hayden say I love you mommy! Oh glorious day!

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    1. You and me both! It will ring in our ears like the sweetest music, as it already rings it our hearts.

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  7. Beautiful post Camara. Since I met you guys online I think of you often and especially see Anaya in anything that has rainbow colors. Just the other day a rainbow appeared on our floor from the sun hitting the sun catcher hanging in my window. My 14 mos old actually found it before I did! : )As I read this post I was picturing how I felt losing my 3 little ones in a miscarriage. I think a loss is a loss and hard no matter the age of the child.. well that is what I feel. I know there aren't many that feel that way. I was also wondering where your older daughter and husband fit in during the journey and would love to hear more about how they coped with everything. Blessing.. Stay strong during this difficult journey. ;x

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    1. Thank you Tiffany,
      I'm sad for your losses. <3

      I will write more about Solara and Brent.

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  8. Beautiful post Camara. Since I met you guys online I think of you often and especially see Anaya in anything that has rainbow colors. Just the other day a rainbow appeared on our floor from the sun hitting the sun catcher hanging in my window. My 14 mos old actually found it before I did! : )As I read this post I was picturing how I felt losing my 3 little ones in a miscarriage. I think a loss is a loss and hard no matter the age of the child.. well that is what I feel. I know there aren't many that feel that way. I was also wondering where your older daughter and husband fit in during the journey and would love to hear more about how they coped with everything. Blessing.. Stay strong during this difficult journey. ;x

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  9. I just lost my post.. Let me try to remember what I wrote. Thanks for sharing your thoughts. I am remembering Anaya through every rainbow I see..even the tiny ones in my home. My 14mos old son noticed a rainbow on the floor coming from the suncatcher.. and I immediately thought of Anaya. As I read your post I have that empty feeling I have had since my 3 miscarriages. I believe a loss is a loss no matter what and it is hard to fill in those voids. You have the memories and those are priceless! Something I would love to hear more about is the beautiful daughter you have now with you and whether or not you guys are trying for more little bundles of miracles? I wish your family the best and pray you can continue your journey to help and inform others. May God be with you as you continue to make many happy memories along the way! xoxo!

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  10. This brought tears to my eyes. So much of this is how I feel about my son now and also how I will probably think of him later. I know I cannot focus on what I may regret but what I have done right and continue to do right. I can still make my son smile and laugh and I do so every chance I get. As my new husband and I talk about expanding our family I have so many mixed emotions...mostly fear. I fear that if we have a child who is sick like my son I won't have the strength to get through it. I fear that I won't love our child as much as I love Stephen (my 1st). So many things...but just as I was before I was pregnant with him, I am excited at all of the wonderful aspects of having a child. I cannot help but wonder if I am being selfish for wanting another child while I have so much on my plate already. Sorry for rambling but your post made me think of so very much. Thank you for sharing your beautiful thoughts.

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    1. You are very welcome Amelia. Don't be afraid. You will be able to handle whatever comes. Love is the strongest force in the world and you have it in abundance.

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  11. Love this post. I was listening to the CD "Grief and Praise" a few days ago and the Shaman talks about truly showing both your grief and your gratitude. It reminded me of you and your true expression of your emotions. You are real.

    xo Kim

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    1. I'm glad you love it Kimmy. Did you read today's?

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  12. Beautiful! Thank you for sharing this with us, you have such a beautiful way with words...your posts always touch my heart! You help more people in more ways than you will ever know:)

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  13. Powerful. As I mother, I feel all these feelings with my daughter. She fought for the life she is living right now very hard and I can't imagine life without her. It would be as you describe. So I send love, warm wishes and rainbows of hope your way today and always.

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  14. I know that your and Brent's love for Anaya taught me and my son a powerful lesson. We had the absolute pleasure of meeting Anaya while your family was stranded in Salem,Or.

    You gave a fantastic and inspirational speach at a retired community I think it was paradise islands or something like that.
    My son and I attended, we had been following your plight after we read a newspaper article a week or so earlier. Towards the end we formed a prayer circle around You, Brent and Anaya. I laid my hand very gently on her soft hair and just took the moment in.

    I still will pause during a regular day and think of that Angel I had the of grace of meeting. Camara, I can speak for myself and everyone I know that helped you, you did thank us. We had no doubt at how thankful you were.

    When you guys were stuck at the RV place south of salem my son and I stopped by with a donation. We gently knocked on the door and you answered and greeted us. I handed you a envelope and you offered to have us come in and visit. I declined not because we didn't want to, but that you didn't need to offer.

    Once again thank you for giving Me the honor and amazing gift of meeting Anaya.

    Scott and Jackson Eastlund
    Dallas Oregon

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    1. Dear Scott,
      You are not unremarkable. I will remember you and your son always. <3

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  15. Your post had the tears flowing in about 15 seconds. I am so sorry for your loss and so impressed with your ability to find the words to share your thoughts with the world. Your little girl was bautiful and I am sure that she is up there watching and waiting for the day you'll be together. As the mother of two wonderful children, Jacob age 11 and Piper age 5, I can only imagine your loss. My thoughts and prayers are with you and i'll think of your little one when I see a rainbow!

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    1. I hope you enjoy it even through your sadness. <3 Camara

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  16. I have followed Anaya's story for a LONG time. Never really commented or said much before, because I would always after take a moment to look at my life and be thankful for what I have. You have inspired me to look at the bright things in life. You are truly an amazing woman. You have pushed to be a greater person and someone who is of help to others. I love LOVE what you are doing. And look forward to many more months and years watching you grow on your journey with Anayas invite. And with raising money and awareness.
    Forever a follower
    Ashley.

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:)