These pictures are of Anaya in the days surrounding her 1st birthday. I often wonder what Anaya is experiencing and I thought I would try writing a post from her point of view.

This morning I awoke and it was hard to get a breath. I move my eyes back and forth- trying to find my mommy but I can't see her. I can't see anything. I cough and my mommy picks me up and wipes out my mouth with a soft cloth that smells of clean laundry. It tickled the back of my throat and I gagged. A big gob of mucous came out - but still I could only take small shallow breaths. Mommy carried me down the stairs (thump, thump, thump) then she laid me down and turned on the Incredibly Loud and Scary Thing that is the suction machine. She opened my mouth a stuck the tube down my throat. It hurt and my eyes teared up. I gagged repeatedly - trying desperately to get it out. I wish I could reach up with my hands - but my arms wont move. Mommy pulls the sucker out and I experience relief and I can breathe again.

I cry and try to yell to tell her how awful it is - but all that comes out is a little mew. Mommy snuggles me and holds me close, whispering that everything's going to be okay now that she's got me. Resting my head against her soft chest the sound of her breathing and the thump thump of her heart beat calms my fear. I take deep breaths. I feel the soft touch of mommy's kisses on my forehead and the bridge of my nose. She smothers me with little kisses and I love it.

Now I hear the Not as Loud noise that makes the cool wet air. Mommy is still holding me and the salty air is in my mouth- in my nose. I breathe it in and it makes my throat feel better. It feels good to breathe it. It tastes salty and salty is one of the only flavours I know. The sound is gone. I feel a drop on my tongue. It is a drop of mama milk. I taste the sweetness of it and move my tongue against my mouth, savouring it. I swallow and it goes down okay. Then I take a breath but - oh no! some of the milk goes down into my larynx and I choke and sputter. After a few more swallows I can breathe again...

August 26, 2010

Anaya is one year old today. It's overwhelming and awesome. She's doing alright. We are short of fresh breast milk but we are working on finding more donors.

I'm just not up for writing this month. My heart beats in the stillness. My love aches. Little joys come in small moments. I hold space for Anaya's health and keep living.

She still knows me.

Happy Birthday Anaya. Thank you for being my baby, my teacher and my cuddle buddy. Love you forever ;)

August 17, 2010

The past few days have been incredible. Anaya hasn't had such a peaceful existance since before she became ill. She is relaxed and shows periods of awareness. She is responding in her own way to sounds and touch. Her second tooth is almost in but it does not seem to be causing too much pain. Last week I had an epiphany that perhaps she was having stomach aches and heartburn. I approached our doc with my theory and we are trying some antacid medicine. It really seems to be working. Anaya is refluxing less and seems very comfortable. I have not needed to suction her in days.

We have some new moms that have started pumping milk for Anaya. They are joining the ranks of our Heros, Anaya's Milky Moms. We feel blessed to have you in our lives and can only hope to convey our love and appreciation through mere words.

I would have to say that this week has been one of Anaya's healthiest weeks ever. She is very stable - improving even. She is sleeping well but also has periods of calm alertness during the day.

On my end things are great. How can they not be when Anaya is doing so well? I'm enjoying our moments together. Basking in the saintly glow of her sweetness. I can only hope that she will remain comfortable and in good spirits.

Her first birthday fast approaches!

August 12, 2010

Apparently my comments thing is broken. I'm trying to fix it.

Anaya is doing alright. Recently weighed in at 7.74kg which is 17.5 lbs.

I'm trying to give her more sound and touch stimulation. I think she likes it.

We are trying to find more milk donors for Anaya. I've been pumping all day to try to increase my supply. So far a little bit of extra milk and the heavy feeling of couch potatoness. I've literally pumped for 6 hours today.

Anaya and Solara and I made it through the day without the nurse. I feel kind of lonely and lethargic. I suppose it's just one of those cloudy days. It's been good for Anaya though. She hasn't needed suctioning today. I tried to put her down for a while but she just cried - so I held her and pulled my fingers through her hair and kissed her cheeks. That's really how it's been. Me, baby and the milk pump. I think her second tooth is almost through. I hope she's not too uncomfortable.

Sorry for the lame entry. My heart's not into writing the last few days.

August 6, 2010

How can I possibly drink enough of her in to last a lifetime? This path winds slowly down. Sometimes my heart aches to much to write and I find solace in keeping busy. I bustle around with Anaya in my arms and try to forget she's sick. Then a moment sneaks up on me and I find my heart on the floor beneath my feet. The weight of myself, of my grief, is too much for my heart to bear.

Oh My little love. I want to keep you forever and see you grow up. I'm sorry that nothing we are trying seems to be helping. I have no words...

Guardian

I was changing Anaya's diaper on the grass and Alexander, our Akbash who is taller than our kitchen table and weighs 140lbs, came to lay by Anaya's head to make certain she was well taken care of. Notice how closely he laid his paw to her hand. Every morning he comes to say "Good Morning" to Anaya by kissing her on the cheek. She is the only person he kisses. He's not a "licky" dog. I find it amazing that he's so attached to her.

August 4, 2010

Anaya slept well last night. The only issue seemed to be her breath catching in her throat on inhalation. I held the nebulizer vapour to her sleeping lips until it dissapated. It's interesting how a little saltwater vapour can soothe her throat. Right now I can hear her breathing through the baby monitor and the catch is back this morning. I'll try giving her a neb (nebulizer) in a few minutes, hopefully it will work to soothe her again.

Our little angel seems to be sleeping more lately. Her periods of wakefullness are shorter and less aware. Although who am I to say she is less aware? Perhaps her awareness is more focused than mine with a smaller scope. Perhaps she is aware of each breath she takes, each blink and swallow. I can imagine her smelling the sweetness of the morning air, the scent of the blooming roses, different types of food cooking on the stove. Her awareness is all present time. What a gift.

I can imagine her feeling our kisses on her skin. I dreampt that she smiled at me last night, and puckered her little lips for a kiss. Oh sweet baby :)

Some days are better than others. Yesterday had some hard moments. There was a baby I saw who was about the same age as Anaya. She was playing with her hand in the water fountain, stomping her little foot on a leaf - absorbed in the experience of the world around her. She was so cute and so sweet. My heart ached for my daughter who is unable to stand, unable to walk, unable to reach her hand into the falling water, or stamp her bare foot on a leaf. I accept these things but they sadden me. There are healthy babies everywhere I look. Most of the time it's no big deal, sometimes it splits my world asunder.

Now I shall go help my sleeping baby breathe easier.

Sparkles

My Baby,
always have I loved you, never would I abandon you.
Since the moment of your becoming,
I have never been the same.
What memories I have of your solid kicks, your hiccups, rolling around in my womb.

You make me smile.
I remember birthing you.
The water of the tub hummed as I OM 'd through each agony.
You could hear me, I know, singing you into the world.

I dreampt of a life for you beyond mine.

Know this, little one,
It was I who caught your shoulders and lifted you gently to my chest.
Oh you were brave!
So loud and vocal, so feminine in sound.
Your strong little arms waved until you settled.
Your eyes looked into mine and you blinked like you knew me.
My soul knows yours of that I'm certain.

I wrapped my arms around you, as I am now, keeping you warm and securing you in love.

When you struggle, I struggle with you.
Would that I could will these anguishes away.
I fight with my heart.
I long for you to live, every instinct screams within me.

Yet I am coming to peace with letting you go.
You slip a little furthur each day.
One day I know you will slip away from me.

I pray that you will allow me to be there, at your final breath.
Our deaths are our greatest moment- our graduation from this life.
You are weathering this life with such grace.
Your strength and beauty inspires me to poetry.
I am so proud of you.

Many things have changed, but never has my love.
My respect for you deepens with each passing day.
You are my greatest teacher.

My Baby.