Tuesday September 14, 2010

Fall is definately here with a vengence. The hot winds of August have been replaced by the cool grey shroud of fall. The leaves are turning yellow, orange and red. It reminds me of last year, freshly home with my newborn baby Anaya. She was so precious and such a voracious little feeder. She pretty much nursed all the time. My memories of the time after her birth are clouded. What is there to remember? She nursed and slept. Time is stealing away the precious moments I didn't catch on film. Which day did she first smile on? I don't remember, I didn't write it down - what day did she lose her smile? I dont know it happened gradually.

In general I try NOT to remember what she used to be like before she got sick. Because then I grieve for what's been lost. I try to stay in the here and now. I breathe in her clean baby scent. Kiss her sweet soft cheek and revel in her simple presence. I have no idea how long we will go on like this but that's okay. As a whole I think she's still aware of things that are going on around her. Her mama still brings her comfort and she's not suffering every moment. The apnea seems to have lessened in it's intensity. She no longer turns blue several times a day. The choking has gotten less, the mucous is much more manageable, she only needs suctioning a few times a week lately. Would it be wrong for me to pray that things stay like this until the end? I don't want her to get worse. I don't want her to suffer. I would rather be suprised and wake up to find she's left us. But I don't get a choice. I just get to go along with her on her journey. The rest is up to her and, for lack of a better term, God.

My maternity leave has ended and I'm seeking to make work for myself. I've gone to the community futures program with an idea for a home-based business. So that I can be close to Anaya and still make money. I can't imagine missing that many hours of her life. At least when I work at home I can take a five minute break and hold her, kiss her, sing her a song and let her know that I'm still here. If I spend too much time away would she forget me? Am I attached to the idea that she knows me? Yes. I want her to know me.

Financially things are tight. A lot of money got spent in the early days of Anaya's illness. Back when I still thought that there must be a treatment that could stop the progression of the disease and heal her. We tried everything - and so many things made her worse- or helped a wee bit - or did nothing. A word of advice to moms of young babies. If a naturopath or TCM tells you to radicly alter a baby's diet with the addition of herbs and supplemnts DONT. God it made her so sick. She was puking and pooping and losing weight for weeks. Then we tried more energy-related healing methods. It didn't hurt her but it didn't seem to heal her either. We did meet a lot of very helpful healers who had their hearts in the right places. Some days we spent more than $500 a day...I don't know why I'm rambling on about this. I do not regret trying everything we could. I just wish it had worked. I wish my baby was cooing and smiling and nursing. By now she'd be walking. She might even say things like "mama" or "dada". Instead I'm trying to figure out how we're going to move her when she gets bigger so that we don't dislocate her shoulders.

I'm going to stop torturing myself now. Stay in the PRESENT Camara!

Anaya is still sleeping. In another hour our nurse will be here to help with her. I'm working on my community futures application and I have the will to succeed. Everything is going to be ok.