Saturday, July 30, 2011


HUMUH Monastic Sanctuary Buddhist Retreat

Yesterday we were in emergency at the Penticton hospital. I was worried and I wanted them to test Anaya for pneumonia. She does not have pnuemonia. The doc says she has a cold and is possible dealing with disease progression. She seems to think that Anaya doesn't have very much time left. I've heard this before and I don't agree. It's not her time yet.

Brent, Anaya and I need some quiet time and some sacred space. We have been accepted to stay at the HUMUH Sanctuary. There will be quiet, meditation, sacred time and meals provided for us. Solara is going to stay with Sharon and Family nearby and go do fun things at the beach. She's not one for "Quiet Sacred Time" lol. She's very hyper.

You can look at

I will be unable to phone, use email or internet for the next two days. Rest assured we are alright and in the best possible care.

Please send love and light to Anaya, surround her with the green light of healing, Pray for God's intervention...whatever you have faith in.

Please help me by talking to others about the Birthday Party while we are away and would someone please stop by my house and make sure the flowers/tomatoes, seedlings are watered. Thank you with all my heart.

Love, Camara
Love - Anaya
Love- Solara
Love- Brent too!

Wednesday, July 27, 2011

More like a fruit than a vegetable...

Within me there is turmoil.  I strive so hard to provide a loving, caring, nuturing atmosphere for my precious girls.  It is true that I do not often write about anything except Anaya, and how I feel in relation to Anaya.  That is actually what this blog is for.  It is meant to focus on one part of my life.  If I was writing about each person in my life it would be so much wider and broader in expanse... I've decided to attempt a wide ranging post see how it feels and weather or no it is in tune with the spirit of Healing Anaya.

I awoke to poking on my side at 3 am.  mmm....hmmm....oh Sola...are you ok?
  "Mommy my nose is stuffy." She says. I take a deep breath, yawn and swing my feet over the bed.  Hugging her to me we stumble to the bathroom where I encourage her to drink a glass of water.
"Are you ok to come back to bed in my room now?" I say to her.  The last few nights we decided to try out a new method, having Solara sleep on a foamy mattress at the end of the bed.  Solara likes it that Buddha lays near her on the floor.
  "My nose is stuffy there too." She says.
   "Ok, Sola, maybe it's because I haven't vacuumed this room this week and the dust and dog hair is getting kicked up by the fan that's blowing to keep us cool."  I peek over at Anaya.  She's sound asleep, hugging her little pink giraffe and making little snuffle sounds through her nose.  "Your sister is snuffly too." I say.  "I'm not sure Solara but maybe if you take some kids allergy medicine and have a hot steamy shower for a bit it will help." She looks up at me.
"I think so...let's run it for you."  So I go start the shower and grab the medicine.  She takes it and hops in.  I suggest to her that she should sit in the steam and breathe the vapour in through her nose and relax until she feels tired enough to return to bed.

I go lay down next to Anaya.  She hums and sighs in her sleep.  Her eyes move in REM sleep and I know she is dreaming.  She seems sticky in the nose so I take this opportunity to give her a vapour nebulizer.  How funny both my girls are stuffy...both of them are using vapour therapy.  Anaya sleeps through hers and I notice that her nose is less stuffy afterwards.  Moments later Solara is done in the shower.

"Maybe I should sleep in my bed for the rest of the night so that I dont get stuffy again." She says  "Ok Solara, I think that sounds like a good idea."  So she went and laid down in her soft, cozy colorful bed with her pink and yellow nightlight and fell fast asleep with the warm water bottle that I fill for her.

Moments later I get stuffed up.  This is crazy! I'm thinking to myself.  How can we all be so stuffed up?  I try to deal with it, end up taking allergy meds myself, and go back to bed.

Hours later I awaken to a little gurgle.  Anaya my little teacher is awake and her eyes are looking at me.  I know that she's blind...but sometimes I swear she's looking right at me.  It's the same way she looked at Solara last night before bed.  When Solara, of her own accord, chose a book and read it to her sister.  The whole thing from beginning to end.  I smiled to see it.

Earlier in the evening Solara and I spent time with Anaya in her chair.  We took a video of it and I'm trying to post it to youtube to share with you.  Anaya had another Spa experience.  We gave her a bath and then Solara helped to blow dry her hair.  We really think she liked it.

Moments after that we ate dinner, and as we finished up our meal, a special guest arrived.  Aspen Switzer came to hang out and sing with us to Anaya.  Aspen is a talented local musician who just got back from doing a tour.  You can find her music on iTunes and Youtube.  Her voice is magical and we are truly blessed to have her as a guest in our house last night.  Solara particularly enjoyed it.  She loves to sing.  We listened to a few, and then joined in on a few as well.  Favorites such as "you are my sunshine, this little light of mine", and others were joyfully harmonized and belted out.  Aspen sang the little mermaid song with me.  It made my day.

Aspen thinks that Solara has a keen ear for music and would benefit from voice lessons.  This excited Solara to no end.  She's been singing and dancing ever since.  Even today...

After a long morning of getting baby settled, feeding everyone and getting out the door, we went first to the Baker Street market and then to Keep the Beat.  A music festival in Lakeside park.  Brent, April and Nurse C came too and I was glad for their help.  We gently laid Anaya down in her little nest we created in the new wagon and positioned her suction and oxygen at her feet.  Pulling her along through the throngs of people on Baker street caused me a bit of anxiety.  Being near that many people interrupts my ability to feel how Anaya is doing and I have to constantly check on her to make sure she is ok.  We quickly made our way through, got to Big Cranium Design and Printing and picked up the bumper stickers for Anaya.  They say "I (heart) Anaya.  They cost $2 each to we are going to sell them for 5 bucks as part of our fundraising campaign.  I think it's going to be great for awareness and spreading love.  In 15 minutes I sold out of the 10 I had on hand today.  I should have brought more.

Arriving at Lakeside park we spread our blanket in the shade of a large tree to the left of the stage.  We arrived just as two women with amazing voices were singing.  Anaya's eyes were wide on the pillow and Solara stood entranced watching them.  Nurse C set up Anaya's feed and meds while I took a moment to sit down and get grounded.  I rubbed Anaya's leg and took some deep breaths.  God there are so many babies everywhere. Babies love Anaya.  They like to come up and look at her and touch her head.  I encourage them, helping them to gently pet her angel hair....

Looking up I notice that Solara has run off the the playground with April, leaving Brent, Nurse C, and I with Anaya on the blanket.  Buddha lays beside, his presence a soothing balm to my anxiety.

Focusing on the stage we watch Aspen sing some beautiful energetic songs that she created, holding her guitar and dancing.  Her smile radiates accross the meadow filled with families on blankets.  Next to us on another blanket is our family doctor.  Dr. Kalia and his wife Alice with their children.  I love living in Nelson.

For a moment I cuddle up to Anaya on the pillow.  Enjoying her sweet calming presence.  I am afraid today.  I'm not certain of what - the anxiety just swells up from within me and I feel like hiding under a blanket like I did as a child - until sleep claims me.  Instead I stroke her soft skin on her arm with the back of my fingers and take another deep breath.

Solara comes running up with April - they say they're going swimming in the lake.  We were prepared for this so off they went.  Half an hour later they came back...chilled to the bone and wet.  I snuggled Solara close to me for a moment, kissing the top of her head.  Brent handed me a coconut water to drink to keep hydrated.  I love that stuff.  Solara really needs to drink more water.  She doesn't like the taste of it.  I remind her several times a day to drink water but the message never really sinks in.  I'm going to make an effort to ensure she gets more hydration from now on.

The event at the park goes on until late tonight with performances from some of the regions best artists... But we left at 5, going back to my house so that I could take the medicine that would lower my stress level.  Walking in the door I felt at home, I felt the need to have quiet and just relax.

So here I sit...telling you of our day.  Solara is upstairs likely playing by writing menus for her restaurant, Anaya is laying facedown over a pillow on the couch draining her mouth, Brent is making us all dinner and I type away.

Brent is a great cook.  Tonight he threw together sliced beef, marinaded in sweet tamarind chili sauce with stir fried vegetables and brown rice with garlic butter and peas.  It's time for us to dig in!


Sunday, July 24, 2011

Sunny Sunday

-Another day in paradise, another moment with my little love. Forever embedded in my heart.

Location:Bealby Rd,Nelson,Canada

Saturday, July 23, 2011

Learning Compassion from HATERS

Wow readers...check out this comment I got on my last post.  

"It is extremely rude and ignorant of you to push Solara away the way you do. The poor child has repeatedly come to you saying she needs to be held and cuddled at night and you tell her no! that her sister is more important. Anaya isn't going to miss one night if you give the time to Solara. Anaya is nothing more than a child living in a vegetative state. Solara is a living being who suffering because of your insistence to keep Anaya going as long as you can. If you honestly think Solara won't resent you later in life its time to give your head a shake. She was better off living with her father where she got more attention and love."

I assume this is the same anonymous commenter who leaves me other hateful comments.  I'm not certain why this person continues to read the blog.  It seems to me that they feed themselves with angst and bitterness.  

Anaya is most definitely more than a child living in a vegetative state.  You've obviously not been around her much, if at all.

Solara is loved and is not suffering She is almost finished her visit here and is then going to stay with her father who has more time and less stresses in his life.  

I think the real issue here is that the anonymous commenter is full of pain and emptiness.  What has your life done to you to cause you to be such a hurtful person?  Are you childless and alone?  Do you have too much money and not enough love?  There's something obviously aren't a mother.  No loving mother abandons their sick baby when they need them.

When the time comes for you to die.  I pray that you will be with the comfort of someone who loves and cherishes you.  I pray this for you because I forgive you and I hope that something wonderful will happen to you in life that will break through your icy shell. 

Your comment made me smile and chuckle to myself. It reminded me how different we all are.  I used to think that severely disabled people should not be allowed to live because they are unproductive.  Since then I've come to realize that each and every living thing has a right to live a life...just for the sake of experiencing life.  Experiencing BEING ALIVE.  I admit I was wrong.  The way I see the world now is so far from the level that you're on that your words most certainly don't wound me.

I suggest you read some spiritual books.  If I were you I'd start with The Tibetan Book of Living and Dying.  It's only a few thousand years old.  Maybe the Bible too.  Jesus loved lepers, prostitutes and sick people.  He taught that it is wrong to hoard wealth and to lord over others.  He taught compassion and love.  

I dare you to take a step forward in life by declaring who you are and engaging in decent human communication.  Differences of opinion happen all the time.  Name calling and throwing daggers is for adolescents.  If you are an adult that has any self-worth or confidence you most certainly can state your opinion to me without fear.

Love from my SOUL to YOURS

Friday, July 22, 2011

Sleep with a Krabbe Baby?

It's been very busy the past few days.  Anaya has had a few up and down days.  She's been having apnea periods again.  She's had to have a breath here and there given to her by myself or a nurse. In the night she's been needing suction and nebulizers.  The suction is so loud that each time I use it the noise wakes Solara.

The dog got left alone in the house by accident without a walk and he messed on the carpet.  That sucked.  Anaya's getting 4 molars all at once.  That sucks too.  I just put her toothbrush in her mouth for her to bite down on.  It seems to bring her some relief.  I need stick-teethers.  Something long and slender that fits in her mouth that I can get between her teeth for her to bite on... Any ideas?

I have had huge days at Community Futures every friday for the past 3 weeks.  Mobile web design, Search Engine Optimization and QR coding classes are fun, amazing and exhausting all at once.  I really put in 100% of myself in my work when I have time to work.  Today I finished a rough draft of the Healing Anaya mobile site.  You can preview it on your smart phone here: 
I still have a couple kinks to work out.  I'm going to work on getting more temp work from home building web sites and mobile sites and facebook pages.  Also helping existing sites to get better search engine rankings and draw more attention.  I need to make a better income to support us.

I've been trying to blog more but often at night when I have the time I'm so exhausted I fall asleep early and then days go flying by.  Anaya's whining on the pillow beside me.  She says her mouth hurts.  She's uncomfortable.  Poor little love.  I rubbed her gums a bit.  The toothbrush seems to help a bit.  I gave her some pain meds.  Solara just went to bed a while ago.  It was an uphill battle.  I explained that she couldn't sleep with Anaya and I tonight because I was staying up late to work on my computer...and because she will sleep better in her own bed.  She wouldn't listen to reason and whined and cried and begged and even though I firmly stood my ground she wouldn't let it go for almost an hour.  It runs me down.  It's so hard.  I don't know what to do.  She's now asleep (in her bed).  And hopefully she won't be woken up by the suction machine tonight :)

Brent did some amazing things today.  He tidied up my house and babysat while I was at class.  I'm so thankful for his help and I think that he's doing a great job being a good daddy and a good friend.

Solara, Anaya and I have been hitting the streets delivering sponsor letters and we got some great sponsors on board for Anaya's Birthday Bash this week including:
- Bamboletta Dolls
-Kolmel Jewellery
-Remedy's Pharmacy
-All Seasons Cafe
-Nelson Star
-The Bridge Radio Station
-Tara Davis Boutique

I hope there will be more to come :)

Ok.  I'm falling asleep sitting up.  Goodnight everyone.

Sunday, July 17, 2011


"Mommy!  Don't go just yet!  Can't you see my right arm is twisted? I know that I put it there...but for the life of me I can't seem to move it now.  Do you suppose you could turn it over and give me a kiss before you go to the kitchen to get some water?"  I really hope she got all that...

"Oh sweetie, your arm's twisted!  Here, I'll fix it..." She kisses me.

"Thank you mama."  I sigh.  It's good.  I'm laying on the couch.  Mama fixed the puddle I was laying in.  She got me a nice fresh receiving blanket for under my face.  Without the blankies the pillow gets wet and yucky.  Sometimes my mouth hurts, especially when I am teething, and I get tons of extra saliva.  If I was walking I'd be the kid covered in drool.  You know the one.  The one with the wet shirt, who goes through 10 outfits a day for a month or two.  It's only cute to people who love you.  Sometimes the puddle gets really big and mommy has to change my shirt, wash my face, wash my neck and put yucky tasting medicine in my mouth.  Sometimes she gives me a special treat and I get a drop of maple syrup with it.  Often times it makes me choke she doesn't do it very often.

Lately I've been getting to try some new foods.  Daddy made me a fresh banana-cherry-breastmilk puree yesterday.  Nurse C gave me peach-banana-goat yogurt and my mama...well my mama made me try fish.  That's right.  Fish.  She told me it's good for my brain.  I'm telling you, as someone who's never tasted fish before...or even knows what a "fish" looks like...burping up that flavor was like something out of...the lake.  She promised that for my birthday I'll get some real chocolate cake!  I'm super excited.  In 9 days I'll be 23 months old.  That means I'm turning two in... well... soon.

My mama's got some people who've been helping her at the house.  They're really nice.  Sometimes they come and read me stories.  I love stories.  Especially when the person telling them does the voices.  You know...changes their a real live Happening.  Sometimes my mama won't let me watch TV shows because she thinks that I won't be able to tell if it's real or not and she doesn't want me to get scared.  But I know it's not real people because I can't feel them in the room.  I can feel people you know.  It's true.  All mama has to do is stand beside me and I know she's there.  Even if she doesn't talk or touch me.  And sometimes, if a bunch of people are looking at me I can feel it.  It wakes me up out of a sound sleep.  You ever get the feeling that you're being watched?  You should try having that feeling when you're blind.  It's darn right creepy!

It happened like that today.  Mama took me and my sister to church and the nice people prayed over me and I woke up.  Singing, dancing, drums and tambourines didn't wake me up...but being prayed over did.  There's something magical about it...something pure and beautiful.  It's like I can see their souls shining love and energy to me...bringing that love and energy inside of me is the bestest feeling in the world (next to cuddling with my mommy).  Then my sister sang in front of all the people.  She sang "You are my sunshine" and I knew that she was singing it to me.  Mommy sings it to me sometimes too...but this was different.  Solara's voice rang out above the crowd, so young and sweet and confident.  Mommy was smiling and she was happy.  I could feel it radiating from her as she held my hand.  After Solara sang we had to go...mommy forgot my milk at home when rushing out the door to get to church on time.  I had a full diaper too, but you don't need to hear details.  :)

We went home and got my milk and Daddy gave me my medicine.  I got to spend lots of time with my Daddy today.  He took me on a walk and tried to get me to sleep so that he could draw but every time he stopped the stroller and looked at me I woke up and told him that I wanted to keep going.  I like the feeling of the stroller moving.  I like the sound of different places, the movement enchants me and soothes me.  Mommy was with Solara.  They had a lemonade stand...whatever that is.  It wasn't too long before Mama came back.  I awoke when she kissed me.

"Wow, you're a stinky baby" She said.

I made a face, or at least I think I did.  I know I stink.  I'm the one laying in it remember?  I try to tell her all about it, but she reaches out and picks me up.  My speech gets cut short as my face gets buried in her shoulder as she adjusts my position.  I straighten out my legs and lift my head a little bit to help.

"Anaya, you're such a big girl!  You're helping.  That's great.  You can help me with changing your diaper.  I'm going to lay you down and you're going to try to hold your legs up ok?"

I mumble my agreement, from my position in a puddle on mama's shoulder.  Uh-huh...just lay me down and get it over with.  I get positioned on my change-table and mama does the sniff-sniff thing.  I can tell she's not happy.  She sighs and kisses my feet.

"Baby girl," She says. "you need a bath.  You need a bath right now."  YAY!  A Bath!  I LOVE the water.  She turns me on my side so that the puddle slids over my lips, instead of pouring down my throat.  Then I hear the water running.  The porch door opens and closes with it's wooden BANG!  It always makes me jump when I hear it.  It's rather a startling sound.  I'm just laying there for a while as she gets things ready.  It sounds like she's going to bath me outside in the baby pool in the sun.  A few potfills of water later she returns to my side.  "Everything is ready sweetie."  She undresses me and takes my oxygen off.  Sometimes I don't even know that it's there any more...but it's nice not to have those things up my nose.  I wiggle it a bit and gurgle into mama's shoulder as she carries me outside into the sun.

Entering the water is like floating in heaven.  It's warm.  It's soft.  It surrounds me and holds me.  Warm water is a lot like love.  It just feels good.  The sun and the water feel good.  Mama holds my head and lays me all the way down into it.  My arms float up and I can move them easily.  I start splashing a bit and I let out a gurgle to make sure Mama sees.  "Look mom! I'm splashing!"  She laughs and uses her hand to cup water over my chest.  I pull my legs up and push them down, firmly pressing my feet against the edge of the baby pool.  It feels so different that the bathtub.  It's not hard and plastic.  It's soft and rubbery.  It tickles my toes and I pull my feet back again.  Unfortunately at this point the puddle I've been struggling with decides to slide into my lungs and I let out a huge screaming cough.  

The suction was there in a heartbeat.  Mama had the loud little vacuum tube in my mouth and she sucked the puddle out.  Panting, I try to catch my breath.  Mama lifts me up so that I'm sitting upright.  I groan out a "Thank You" and she kisses my forehead.  Then she lays me gently back down in the water and starts scrubbing me with a soft cloth and some Earth Mama Angel Baby wash that smells like oranges.  Mama likes it and it's gentle on my sensitive skin.  She cleans my tummy and my whole body!  She even washed out my ears!  After I'm all clean she massages my neck.  My neck gets so sore. It's because I have to lay on my side so much.  My shoulders are starting to hunch over a bit.  Mama tries to stretch it for me as often as she can.  It's tender though.

After the bath mama did something different.  She dried me off and then let me lay all nudie in the sunshine.  It was hot and beautiful out.  The sun felt warm and loving on my skin.  I was so wide awake.  For a moment my mama put her forehead against mine and said "I love you".  I LOVE YOU MAMA!  Using all my effort I send the love to her.  She feels it.  I can tell these things.  Moments later she wraps me up in her arms and carries me inside.  I'm the puddle on her shoulder.

"You're my little puddle aren't you?" She says.

I certainly am.

-Another day in paradise, another moment with my little love. Forever embedded in my heart.

Saturday, July 16, 2011

It's not always...

It's not always the thought that counts.  No matter what your parents told you when you were young.  A lot of times it's the action that counts, the energy that's put into making the thought a reality.  It really means nothing to have loads of thoughts and to never act on them.

In the past I have acted too quickly on my thoughts without fully thinking things through.  Lately I've been attempting to fully see a path before I make a decision, but I find it difficult.  It's so hard to plan my day, and my life with my daughters at this point. I often feel  confused and overwhelmed and in order to deal with it I take action. I only know what is important now in this moment, and sometimes the moment requires action.

Maybe it's loving the children, experiencing this moment right now, being fully in my body, fully involved in writing.  Maybe it's taking Anaya for a walk to deliver sponsorship letters.  Perhaps it's tidying up the house, filling out an application, taking out the trash - Whatever it is...for me sometimes the more I think about it the slower I am to ACT on it.  That's why I often make quick decisions and take action immediately.  There's nothing like the now.  I am living NOW.  The other day my father stopped in to visit and he asked me what I plan on doing after Anaya dies.  I told him the truth.  I said "I don't know."

He said "What do you mean you don't know?  You haven't given it any thought?"  I contemplated, looked him in the eye and said,

"I really don't know.  How do you plan for something without a timeline?  I really cannot see what lies beyond life with Anaya."  And it's the absolute truth.  Sure I've contemplated what my life might look like in the future.  I might get more into pottery, I might go to medical school, I might get my Masters or become a teacher or I might meet the right man, get married and have a healthy baby to love and cherish.  I might end up writing about my philosophical thoughts and live in the moment taking each day as it comes.  I really have no %$^&*% clue.  Is that wrong?  It feels right to me.  I make decisions as things come up.  I try to do the right things for me and my girls, be the best me that I can be.

 At the moment I'm working on Anaya's Birthday Celebration and Fundraiser in order to give Anaya what she needs.  She needs her meds, her special stroller, house modifications or moving, and my time.  More than anything she needs my time.  When I've been away for a few hours and I get home I hold her in my arms and kiss her soft cheeks.  She opens her eyes wide, then she hums the little sound that means "MOMMY!!!".  Putting her head on my shoulder she hums and groans, telling me about how she feels, and how glad she is that I'm back.  I tell her I know. "I know, little love, I know."  I know that she needs me.  I make her world safe.  I'm the warm, soft mama that smells often of spice and roses.  The mama who kisses her feet, her nose and her eyes.  I'm the mama that safely baths her and sings of mermaids in the tub.  I'm the fierce, protective mama that advocates for her needs and rights.  The mama who gets over her fear every day to go out into the world and ask for help.  The mama who fills the outdoor baby pool with warm water so that she can enjoy the feeling of both the sun and the water on her skin at the same time.  I am the mama that does her very best...because it's all that I can do...

and yet...

Today Solara and I were driving home from her girlfriends house.  She asked if she could sleep in my bed with me and Anaya tonight.  I gave it some thought and said "No."  She asked why.  I said "Because I really need some personal space to write and just be alone, and some space to stretch out in the bed."  She asked in a rather petulant tone why Anaya gets to sleep with me.  I said for the hundredth time that Anaya sleeps with me because I have to take care of her.  She said I need to take care of her too...I said her needs are different.  She doesn't need to be suctioned in the middle of the night, or helped out of a puddle of urine or vomit or poop.  Solara then said
"Well I guess I don't mean anything then."  My heart fell out of my chest and I instantly felt tired.  I assured her that she means just as much to me as Anaya does.  I love her so much - and I'm so happy that she is healthy and happy (mostly) and fit to run and jump and play.  I just want my bed to myself...that's all...just a little bit of space for me for a night.  Hopefully I don't unintentionally cause her years of emotional anguish thinking that her little sister is more loved than she is.  It simply isn't true.  What is a fact is that my relationship with Anaya is more intense and more philosophical.  I can only use my empathy and my intuition to know what she is thinking or feeling.  My senses have become hyper-aware of her and I pour energy into her because I simply cannot help it.  She's my baby and she's sick.

I did my best to explain to Solara that sometimes we all want our personal space, and that I would even gladly take a night off of sleeping with Anaya...If I could trust that she was with someone else that would care and love for her properly if she happened to get sick and/or die in the middle of the night.  That might sound callous but it's true.  Could you imagine leaving your kid with a babysitter and coming home to them dead?  Could you imagine knowing your child was expected to die...and then leaving them with someone else?? It's hard.  There's a lot involved.  It's complex and beautiful and frightening.  The beautiful part about it is the mortality.  We will never be more alive than we are right now.  There is so much beauty to be beheld on earth when walking in the shadow of Death.  It brings out vibrancy, love and truth.  My truth is that I want to be with Anaya when she dies.  I grew her inside of me, I nourished her, I birthed her, I care for her.  I want to give her what she needs until the very last second of consciousness in this life.  I am the mama that will be there.

And so I sit here in bed, Anaya lays beside me.  I write to understand, to be understood.  Anaya breathes her baby breaths and dreams her baby dreams.  I wonder if blind people have vision in their dreams...perhaps this is what she is dreaming...

My eyes open to a bright light.  The sun shine in the window.  Turning my head I see my mama.  She smiles at me...I smile back.  Reaching my arms out to her, she picks me up and holds me to her breast. I root around and find my favorite "milkies".  Latching on I suckle the warm, sweet milk...breathing easily, swallowing again and again until my tummy is full.  Unknowingly I've closed my eyes...opening them I look up...into my Mama's big green and brown eyes.  I pull off the breast and smile at her...she smiles back...I latch back on and fall asleep...

Looking over at Anaya I see her lips twitching...her tongue barely moving... and I know she's trying to nurse in her sleep... my baby girl.... it's been more than a year...

*Thank you for reading...please support me in being with Anaya by making a small contribution through paypal using the button at right...

Thursday, July 14, 2011

Pics of today

Anaya with "Uncle" Grant. Anaya had a lovely day.

Solara came home! Im so happy! Solara had an equine therapy session today. It was good for her.

I've been so busy the last few days, I haven't been able to write. I will fill you in tomorrow.

-Another day in paradise, another moment with my little love. Forever embedded in my heart.

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.

Friday, July 8, 2011

Friday a New Day!

It's late and we need to go to sleep but we just wanted to share a few things with you.

I had a good day. Anaya did as well. I was in a community futures web development class all day. I learned how to build mobile web sites for smart phones. Check out this idea!

Anaya was with Nurse D. I met two new guys who are going to be a great asset to helping with Anaya's party. Mike does visual editing and Dominique is a musician. Very exciting fusion is possible!!

It's Friday so Lisa Martin brought us a beautiful dinner. Anaya even had some of Lisa's pureed garden greens. Thank you so much Lisa. The burgers were amazing!

After dinner our friend Amelia came over with some Donated Shambhala music festival tickets for us to Auction off!!! It's already Sold Out! So they should be worth lots :). Thank you Anna and Shambhala.

Amelia also brought her daughter Freya and friend Violet and they planted flowers in our garden :)

I am so incredibly grateful. Thank you so much Amelia, Freya and Violet !!!

Then we chatted with April about planning Anaya's Birthday. April has been volunteering time over here at the house sometimes. She's wonderful.

After that Anaya had her teeth brushed with toothpaste for the second time and then had a warm and soothing bath with mummy. <3

Now it's time for sleep and she is already passed out on my chest.

-Another day in paradise, another moment with my little love. Forever embedded in my heart.

Thursday, July 7, 2011

First Minty Brushing.

I meant to say "First toothbrushing experience with TOOTHPASTE!!"

I think she's still tasting it. She's happy :)

Wednesday, July 6, 2011

Wacky Wednesday

I find myself at a crossroads, panic stricken, not knowing which way to go first. I've been with Anaya all morning. She awoke choking, screaming with the intensity of clearing her throat. The medicines we give her to control her secretions seem to be losing their effect and she has been so wet. The suction machine is our constant companion, and we often have to empty the canister several times a day. Brent was here to help me this morning and we started by giving her atropine to dry her up.

Preparing to visit my friend Ellen (who lost her beautiful son Sebastian a while back), I dressed Anaya in a beautiful white dress. The atropine kicked in and she dried up. She also became a bit sleepy, which is an unfortunate side effect of the atropine. Nurse D showed up and we walked Anaya down to the OSO Negro. A fabulous garden orientated Nelson Coffee Cafe.

Pulling my strength around my being I stood a bit taller and pushed Anaya through the throng of people. Everyone is curious. Everyone looks at Anaya. Everyone looks at me. I smile and stand in line with Ellen and Nurse D. There always seems to be the lingering question in the air, just hanging around us.

What's wrong with her? What's wrong with her? What's wrong with her?

It echos in the stillness that swirls around us as people stop conversing to look.

Curiosity, judgement, observance. I wonder what it would be like if everyone could feel each others emotions. Anaya certainly reacts to people's feelings. In fact I have found that she often has a harder time around large groups of people. By harder time, I mean a harder time breathing. Standing in line just then she began yawning, her lips turning dusky and then purple. I bent towards her head, lowered my lips to hers and gave her a small puff of air. She sighed and regained her rhythm, returning to pink. Intent on her I watch her chest rise and fall, listen to her sounds and smell her sweet baby scent.
"Excuse me." I hear a woman call, "would you like to order?"
I had forgotten that I was at the head of the line. "Yes please, I'll have an iced coffee please, and an breakfast muffin." I fumbled my wallet out of my purse, dropping receipts, and a hair clip onto the ground. Bending to get them my back tightens and I am reminded that I need to stretch it more.

Taking Anaya out to sit in the garden with Nurse D and Ellen I am approached by a beautiful little girl who looks at my baby with pure innocence and curiosity. Her mom speaks to me with kind regard, and I am touched by their presence in the moment. I hope to see them again.

My back tightens again as I sit down and suddenly I know with a certainty that I have to move. Literally. I need a new place to live. Carrying Anaya up and down the stairs in my house

has become dangerous - the nurses are not allowed to do it and therefore I have to. The nurses are also not allowed to bathe her in the bathtub because it might hurt their backs, so I do it. I love bathing with her. It's just so awkward getting her in and out. She's slippery like an oily noodle wrapped loosely around a spoon. One of my biggest fears is having her slide out of my arms and that when I try to catch her from falling, I grab her arms and dislocate her shoulders. It's a very frightening thought for me. I never want to cause my angel pain.

Sitting in the partial shade at OSO I realized that I need to start looking for a place that is wheel chair accessible and that has a handicap bathroom with room for a special table, tub and lift. I know in my heart that Anaya will be here for a while and that we need to accommodate for her needs. I decided then and there that I would start working on it today.

So we walked down to the Nelson Cares Society - which is supposed to know about accessible housing. I found out that they do not provide services to children and I was given a number to call. I was also told that finding housing in Nelson suitable for a child with special needs like Anaya's is next to impossible.

That's when the panic attack hit me. I called the number. The voicemail box you have reached no longer exists. Holy Shit. The heat hit me, my heart constricted and Anaya started turning dusky again. Pushing down my panic I give her another puff of air and ask the woman behind the desk for some water. Pulling out the small syringe I carry in my purse I gave Anaya a drop of water on her tongue. It seemed to refresh her. One drop at a time. Cool giving drop at a time.
I drank a glass too. Deep breath. A thought comes to me from out of nowhere.

Maybe there's something somewhere. Maybe if I get the word out there will be someone who knows of a place. Maybe if nothing exists for Anaya now, it could be built. We need a level space with either an elevator or a ramp, with full bathroom and bedrooms on the main floor. It needs to have a minimum of two bedrooms, with the optimal number being three. There needs to be a large handicapped bathroom that has room for a lift or a special bathtub.

Ok. Now I need help finding it. Readers, any suggestions?

Monday, July 4, 2011

Canada Day Weekend

Last weekend passed like a blur.  A close friend of mine came to visit from Calgary and we went to the Canada Day festivities at Lakeside Park.  Brent cared for Anaya and Sylvie and I went for a while alone - later joined by Brent and Anaya for the Fireworks.

Somehow this weekend has altered my life perspective to my very core.  I feel as though I have been selfish and fearful.  Lost and desperate.  I realize that I have been attempting to escape my grief, escape my situation, by burying myself in "important tasks" like trying to raise money for me to stay home with Anaya, doing work on my computer - networking, grant writing, researching - BUSY BUSY BUSY.  I've also been seeking love outside of myself, trying to attract a new man, a SUPERMAN, that would somehow rescue me from everything and save the day.  Someone who could rescue me from my grief, my despair, my fear. A person who would know what to do in every situation and solve my problems.  I've realized that this Superman does not exist.

I've also realized that the last thing I need right now is Superman.  I've hit rock bottom within myself.  I have abandoned some of my core beliefs and values because I have felt as though my very reality has been crushed.  I've taken every negative word to heart, taken personally the fact that I am not able to save my daughter, and am therefore not a good parent, not a good mother, not a good friend, not a good wife, child or grandchild.  Pretty much a lost human being.  Down at the bottom of my rocky self I found something worth saving, something worth more than anything, my desire for love, peace, justice and harmony in the world.  The core of every one of us is pure love.  It gets bashed, buried and graffitied - but it's there.

Looking at Anaya the pure love radiates through me, it burns away the negativity, it reveals to me that my fear is a waste of life.  That I need to choose love.  I need to stop being afraid.  Everyday I just want to be with her, learning, meditating, bathing her, walking her, reading to her.  Yet everyday I have found myself creating a life OUTSIDE of Anaya.  Hiding, escaping, refusing to learn from my teacher, refusing to face the dying - the death - the life.  All of it.

I'm ready now to face it.  I'm ready to be my own Superwoman.  I'm ready to go deep into my emotional turmoil with Brent and create a true and real friendship.  I am ready to face my own selfishness and embarrasment.  I've been hiding my feelings behind a wall that looks like strength to some people but really it is my attempt to control my world, and create some kind of normalcy.  The fact is that this is not a normal situation.  The truth is that I'm not strong.  I am completely devastated that Anaya has become little more than a beautiful living doll.  I'm sick with longing for her to get better.  I hate myself for not being able to do anything about it.  I wish I had some magic power within me that would HEAL her.  I get lost in my despair sometimes which is why I build the walls around the pain that look like strength.  Lest I drown in the enormity of it.

Moments of Joy with Anaya are sweeter when I allow myself to be REAL.  To feel my sadness, be one with my love, allow my mind to relax and let go of the fear and anxiety I feel about "making it" in the world.  I have so much fear about "making it" in the world.  What is it to be a success?  Does it mean I need to leave Anaya alone with a nurse and go to work all day?  Will that make me a better person?  It's not what my heart wants. I just want to be with Anaya.  I want to experience her lifetime with her.  All we have is precious time - and I've allowed so much of it to waste away.

I don't even know if it's right for me to be asking people for money to help me stay home with Anaya. But that's what I've been doing. Perhaps it would be more integral for me to move into subsidized housing -with disability access and claim welfare.  Then I could spend my time with Anaya actually BEING with her instead of trying to always find a way to pay the bills and save for Anaya's special needs.  She's my baby.  My sweet innocent little baby girl who had a smile that made my heart soar and my soul sing.  She's still in there, her beautiful soul, - in that little  fragile body.

She still knows me.  She hears my voice and responds, she breathes easier when I hold her.  She sighs with love and contentment and I know that she needs me.

I know that our time is falling away like sand in an hour glass. I won't be lost anymore.