Monday, May 2, 2011

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....


  1. So glad to hear that you have Katie there to help you. Must be so nice to have a good friend there when you need it, especially with a lack of a nurse (how frustrating!).

    You are an incredible, strong lady with a resilient soul. Whatever you choose for your sweet little girl,regardless of your past decisions, will be what is right for her and for you. Heroic measures or not, you make that call when the time comes - and they will be the right ones.

    There are days when all we want to do is hold our babies. You have to do that, more than anyone else. The rest of the world can wait. Your time with her is precious. The emails, the blog, it can all wait! Hold her and soak her in as much and as long as possible.

    You are always in my thoughts and in my prayers. Special ones are said for that beauty of yours when I think of her (which is often!). Stay strong, stay well.

  2. Camara: I know I am nobody, but I think the Bi-Pap is not as bad as you might think or as a life support or to plug the baby to a machine. It's like a ventilator, I agree, but is more a help tool than a life support machine.

    When the brain stops sending the order to the lungs to breath normally, the bi-pap keeps the airways open so no choking and she will be more confortable all night. The apnea is just seconds. It can help the little warrior, is not a heroic measure. Think about it. I know how it works and it is not as bad as a hospital ventilator. The Bipap is only used when she sleeps. But I tell you, I am nodoby.

    Regarding the seat, I love Canada, but how difficult is to get access to disabled people tools like seats, POCs, etc,here. Everything I have looked for here, its too expensive or doesnt exist. US is better for that and sometimes you can get stuff in places you never imagine.

    I just want to say that, and we are all with you. Just close your eyes, you got people everywhere supporting you!...

  3. Go to in their special needs section. You don't have to register to ask questions. The techs on their might be able to help you out in finding a special needs car seat or even a commercially available seat that would better support Anaya.

  4. I have started reading your posts and getting your updates in my emails. My heart and prayers go to you and your dear little girl. I cry reading them. I am encouraged by you when my days are rough with my boys to cherish them and I thank you for that. I am a Breast Feeding Peer Counselor and know the value of the breast milk your daughter is receiving. It is an amazing story. I only wish more mother's who can breast feed would value their breast milk and the wonders it can do for their babies. You have great courage to bring other ladies into your life to help supply your baby. I admire your strength.

  5. Hi Camara,
    what a wonderful mother you are. And what wonderful daughters you have. Anaya is a warrior just like her mommy. You know what they say ' Like Mother, Like Daughter'. Anaya goes on because you do. You are her rock, her safe harbour. She knows she is cherished and loved beyond any boundaries and unconditionally. Your daughter is a heaven's messenger to all who have come in touch with her and you. Her message is loud and clear - 'Love without any limits or conditions and don't give up'.
    I myself have a 6 month old daughter. And you and Anaya have taught me to love more not just her but all I care for and love. I hold my daughter more lovingly and tightly now a days and count my blessings every day and I tell all I love and care for more often what they mean to me.
    In my culture we believe that God speaks with the wee little ones every day and hear their prayers more easily. So I talk to my daughter about Anaya and her mommy Camara. I tell her to ask God to look after your beautiful daughters and you, to give you strength to fight and never give up, to make Anaya as comfortable as she can get and to surround you all with love and peace and happiness.
    At night before I fall asleep I say a prayer for my daughter, for Anaya and for you, I pray to God to be with you always and to give you strength to go on.
    There is not much I can do for you even though I wish I had wings and I could fly to you and help you in any way I can. But remember you are always in my prayers and even though I am a no body to you, that I will always send warm wishes, Reiki, love and prayers your way.
    Lots of love to Anaya and Solara :). I will continue following Anaya's Life through Facebook and yout blogs.


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