Rain and Rainbows

There are moments in life that stop time. Moments that surround you completely with their vivid arms of sensory interpretation. I have moments like that quite often. Sometimes it's when I'm with Anaya and Solara, sometimes it's when I'm alone, sometimes it's when you look into the eyes of someone you've just met and find part of your soul staring back at you. Or when a friend comes over and brings you food made with love. The moment can steal up on you. Usually you don't notice it, but if you are open with your heart, and let go with your mind - they come more frequently.

I haven't slowed down much lately. In fact - I find myself so overwhelmed with things that I "have" to do that I have been missing out on moments like that. I've taken on some big projects for my home-based business and also trying to keep up on Anaya's website etc. Having realized my work-aholic attitude last week, I've started to schedule my time as to be more effective and less overwhelmed. So far I'm still behind. I'm trying like anything to catch up but there's always more. I need to find someone who can help with emails and someone who can come to my house and help me clean so that I can spend more time holding my little love.

But it's hard to schedule time for Anaya. I just want to hold her and love her every second. How can I say "These three hours everyday will be just for Anaya". It just sounds wrong to me. I need a duplicate "me" to do the work so that I can just snuggle my baby. We all wish right? I wonder if I would argue with another me. **Laughter** We'd probably both want to spend time with the baby.

Anaya has been having a rough go the last while. Her muscles in her little neck are sore and stiff. She whimpers when she is picked up. She now turns blue even when on oxygen sometimes. She seems to be unable to take a breath. She tries desperately to yawn, but her little chest muscles ignore her brain's request for air. Generally when this happens it is when she is awake. I have been watching her like a hawk, and when I see it I give her one quick puff of mouth to mouth. One puff is always enough to help her muscles remember to work. Then she starts breathing on her own. The times the are a- changing. How I've feared this stage of the progression of her disease. The time when the suffering begins to eat our beautiful moments and I'm faced with terrible decisions. The doctor says that a bi-pap machine at night for Anaya would be like having her on a ventilator. That it would be a life-support. I've always thought that we wouldn't do life support. No "heroic" measures, or crazy invasive machines will be used to keep her beautiful perfect little body alive. That was decided long ago. But where is the line? She needs a little bit of help. The occasional puff of air. The sensation of asphyxiation must be terrifying for her. My baby, my little love. What am I going to do? How am I going to survive watching my baby die?

Well it takes rain to make rainbows.

I got in trouble this week from our nursing company. They are called "Resource-ability" and they get all pissed off every time I mention the names of our nurses in my blog. I've tried to explain to them that I have a right to use the first name of my nurse if given permission from the nurse, that it in NO WAY WHATSOEVER violates their "confidentiality" policy about "Client privacy". Anaya and I ARE the client. Needless to say, there was a bit of a showdown about how Anaya's nurses are supposed to be nameless and faceless. No pictures, no names. I was definitely upset. These women are part of our family day-to day. I trust them with the life of my child. They play a HUGE role. It ended with one of our nurses taking an "Indefinite leave of Absence" which is about to become a permanent leave - how am I supposed to trust someone who ditches me without a nurse for five days? It's enough to make me want to curse publicly.

Thank God Katie is here. Katie from Texas. Katie Shutt of The HumanKindness Initiative. I'm not certain if saying her name three times is enough. This woman has the energy of a supersonic ping pong ball. Her deep throated laughter and contagious smile are seconded only by her boisterous voice that rings in my ears the way sunshine tickles my skin on a perfect day. She came from Texas on Thursday. I met her at the airport in Spokane. It was interesting to meet the face that goes with the voice I've been talking to on the phone for at least an hour every day. Initially it was weired. Like trying to sync my brain into understanding that that body, Katie's little body, is inhabited by a soul much larger, brighter and louder than any other I've ever met. Then we started talking and within the hour we were synced and comfortable. It was an incredibly quick 3 hours of driving. We have a lot to talk about. We are like twin sisters that were separated at birth (at least our spirits feel that way). I've never felt so comfortable with another woman. I feel like I have a kindred spirit, a new family member. I'm so happy about it.

The day after Katie got here we no longer had a nurse, so we've been with Anaya the whole time. Our other nurse, let's call her "Carolla" is away and won't be back until Thursday. Taking Anaya out can be difficult. She needs to travel with her oxygen, her suction, her emergency medicine and all the stuff that normal babies need. Lately I've been taking her everywhere with me as I show Katie what Canada is like here in the Kootenays. Our car seat for Anaya is a joke. It's a carseat for regular toddlers and it does not support her little body or her head in anyway that is good for her. I asked our "Physio Consultant" about the possibility of getting her a car-seat that she can actually USE and got blinked at with incredulity. So all we have is the Wal-Mart seat that she folds into like an accordion, her spine bent and to the side, her head lolling back, her legs sticking up at an angle that hurts even MY knees just to look at. She always ends up choking because her head is too far back and she can't swallow the saliva in her mouth. Then I have to pull over and suction her. It's really very awful - why the heck don't they make special car-seats for disabled children? Is my physio consultant telling me the truth? Do they really NOT exist here in BC? If anyone knows different please let me know immediately.

On a positive note - we have been having an incredible response from Anaya's Website and The Anaya Initiative. People have been sending books for the Library of Hope, wind spinners for the yard, and postcards to Solara. It's been fantastic to have those moments of joy when the mail arrives. It is something me and the girls look forward to like a child at Christmas. When a new book arrives we try to ensure they are organized to make certain that everyone gets a thank you and the books get posted on the library page, but I'm behind in it. It's just not as important as other things have been this week. I'll get to it soon enough. I'm behind in my e-mail too. So if you've emailed me and you are waiting for a response - please be patient with me.

I'm thinking of a shoulder I could cry on, but I'll end up laughing instead. There's just something too funny about stressful situations. Everybody knows who I am, what I feel. My heart is an open book. Sometimes being anonymous even for a moment takes the weight of the world off of my shoulders. I only wish I was a little stronger and could handle a little bit more. I need a little more Celtic blood I think....