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 thing...my "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...


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