Sunday, June 27, 2010

Sunday June 27,2010

Yesterday was as beautiful a day as anyone could have asked for. The sky was blue, the sun shone. We had a family breakfast at the bakery, joined by neighbors and friends. We spent the day in the yard by the swimming pond. Between Brent and I we took care of Anaya, as she was doing really well and didn't seem to mind hanging out in her stroller. We had a few friends over for fun in the sun.

I put her toes in the water for the first time. At first she wiggled and made a very funny little mewling growl that sounded like "oh no oh no! it's cold!" It was her 10 month birthday, and I figured we needed to do something to mark the occasion. I got the dip on video...I was thinking of posting it on here but I'll only do it if there's interest in seeing it. If you want to see the first dip leave a comment :)

Around 5pm Anaya started having issues. She threw up a little bit of milk, but had trouble swallowing it back down. That leads to reflexive swallowing and gasping breaths. I took Anaya in the house and suctioned the yukkies out of her throat. It left her blue and gagging. She started having small jerking motions in her arms and her eyes rolled back. She stopped breathing. I rubbed her chest with my fingers and encouraged her to take another breath. I talked to her..."Come on baby, breathe baby breathe" I placed my mouth over hers and puffed some air into her lungs. She coughed and took a deep breath. I wiped her mouth out with a recieving blanket.

We sat down in the rocking chair that views the back yard. I held Anaya in one arm and held the vapour nebulizer up to her face with the other hand. I called Brent to bring the Oxygen bottle because her breathing was so slow, so shallow. I got her all hooked up and then I just sat there and snuggled her and kissed her a thousand times thinking "This could be it, this could be our last day, our last moment"

My throat clenched and my heart stretched as wide as my house. Oblivious to what was going on with Anaya, my roomate and his friends smoked and drank beer just on the other side of the window. I thought of asking them to leave. I thought of creating sacred space. I decided not to ask anyone to leave. I created sacred space where I was sitting. I created and held the space of love for Anaya around our rocking chair- no matter what anyone else in the house was doing.

Watching my baby struggle with her lips tinged blue, my anxiety peaked, then passed. I found a shelter of strength knowing that I am her mother, I know of all the things she wants close to her, it is I. I bring her comfort. I am doing all I can for her. She knows I love her. If she chooses to pass on such a glorious day, her 10 month birthday, then that is her choice and it is not mine.

Thoughts come and go like clouds mirrored on the surface of a lake. I rock Anaya and hold her warm body to my heart. The oxygen is helping, her lips are pink again, the nebulizer is helping to moisten her dry throat. Did her medicine over dry her today I wonder?
Did I spend enough moments with her? Have my actions counted? Have I left her too often without the comfort of my presence? Have I been a good enough mother to her? Could I have created some kind of miracle that I missed in passing?

All these thoughts come and go. We rock. We watch. I pray and kiss and love.
She turns pink, her breathing regulates, she stops her jerking. Now she is just a sleeping baby in my arms. It's been two hours. I notice that I missed dinner.

I turn off the oxygen bottle and stand up, walking through the house in a sort of daze.
"Where are you going?" Someone asked.
"As soon as I pump I'm going to bed" I reply.

Entranced in the closeness of the intense moments Anaya and I just shared I could not communicate myself. I meditated while I held her and pumped milk. I chant in my head "Galactoceribrisidase, Galactoceribrisidase" That is the enzyme she needs to make to get better. If only I could help her make it. I visualize her cells making Galactocerbrisidase at the ribosomes. I visualize it breaking down the fatty chains and the remnants being picked up to make myelin.

Pumping complete, Anaya and I head upstairs for bed, pausing for a glass of water and a milk bag to connect to her feeding pump. Daddy always takes care of that part. As I close my eyes, after kissing her sweet cheek one more time, I think to myself "that could have been the end, but it wasn't" and I smile and snuggle up to her.

Today was a regular day. No events like the one of the night before. We had a low profile day. Anaya and I took our breakfast and coffee outside in the morning sun. As a family we took two walks with the dogs, one down the road, one to the store. Solara played with some girls and Brent made an incredible salad for dinner. Yesterday's events still permeate my being. Each moment is even more precious today. It made me realize how close I might be to losing my little love, and how incredibly unprepared I am to be without her.


  1. Thank you for sharing this with us Camara.


  2. I would love to see her first dip! Thank you for sharing your hard and pleasant moments. You two are excellent teachers and blessed to be part of each other. As always, my heart,hopes and prayers are with your family. <3

  3. I haven't commented before, but you are a very strong momma,helping your beautiful baby have another day on this earth, and i would love to see her first dip. Your sweet baby Anaya gives you strength. As the lady above said, my heart, hopes and prayers are with all of you.

  4. Thank you for sharing. The video was adorable, Anaya is too cute. You are stronger than you know. My thoughts, and prayers are with you and yours.

  5. I have been reading your story from the beginning but have not commented until now. You are so strong and doing everything so right. I have 2 little grandchildren and wish I could do something to help you with your struggle. Just remember that you are doing everything possible and do not ever let people's comments change your thinking!


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