Have you ever seen the movie "The Matrix?" Do you remember this line? "Do you ever have that feeling where your not quite sure if you're awake or if you're dreaming?"
There are times lately where I wonder if I'm stuck in a dream. Is this horrible disease really stealing away my baby? Wasn't she perfect just a short time ago? How did this happen so quickly? Where did that perfect future go? The truth is I grieve things that haven't happened yet that will never happen. I already miss the sound of her little baby feet running across the floor. Or the giggle that would have come from tickling her little sides, watching her pick her first flower, seeing her delight in the fuzziness of our dog, eating her first birthday cake with her hands and sucking the remnants from her fingers. I wanted to hear "Mommy, I love You" and though I know she does, I still miss it's loss! How crazy is that? Missing something from an uncertain future.
I've been a bit off today. I'm overwhelmed and sad. Anaya has regressed so far. Her actions are less mobile than those of a newborn. In addition Anaya has been extra phlemmy. Suctioning her throat out scares her and it hurts my heart to have to do it. The main cause of death in kids with her condition is pnemonia. We're told it's really only a matter of time before pnemonia will come and take our baby away. Oh God, perish the thought. My little love, I pray you will heal or go peacefully and without suffering.
Anaya's Do Not Resusitate order came in the mail today. It means she's allowed to die peacefully and without intervention should the time come. We don't want to subject her to the trauma of life support machines. When it's her time, we will hold her gently and kiss her and try to be brave. Her bright soul deserves a better body. I believe she'll have one someday.
These sadder thoughts sneak in to our lives - we are only human. People think I'm strong and doing such an amazing job with my daughters - but I feel so weak. Nothing I've done has slowed the progression of the disease. I don't even know if she can see me anymore. Her cooing is gone, her smile is gone, sometimes I wonder if she's in there. Through it all I hold her close, snuggled up to my chest where it is warm she seems most content. She still knows me. She must be in there.
I'm not always strong, I'm not always sane. Today I shouted at my partner for no good reason, insisting that mowing the lawn was terribly important. I feel so helpless in my environment. I wish I could go out and mow the darn grass! This helplessness discourages me. I feel the need to accomplish things, to see positive change.
I can't have a going away BBQ on Sunday. My house and yard are not fit for any kind of event at the moment and there is nothing I can do about it. Oh the silliness of my embarrasment over this, I know - but it's there. I can't pull it off so I have cancelled it. I apologize - I was so looking forward to it. Mothers day has never had so much meaning to me, or so much emotion as it does now. I am a motherless daughter mothering my dying daughter. I think it's brutal that Brent couldn't get the day off work to be with us on what could be Anaya's only mothers day.
On top of all of this I'm terrified about going to Calgary Children's and hearing big dark pronouncements about my daughter said in monotone in the bad news room.
I know my fears are only thoughts, but my emotions are valid and I am going to let them sit here with me for a time. Then I will let them settle away overnight, hoping that tomorrows dawn will bring a sunny day and a bright new attitude in my head and love shining in my heart.