Today I got into the office and started by checking my Facebook.
My first message was from a couple in Italy. Their daughter, Ginevra, has Krabbe Leukodystrophy. She is such a beautiful baby girl. They said that she was having trouble breathing and they asked me if I had any advice for them. They told me that their doctors have never seen a baby with Krabbe. I had already told them what I could from afar...so I asked if they wanted me to come there and help them. They said yes. I booked a flight immediately and decided I would worry about paying for it later. I'm hoping that my friends and other caring people will pitch in. The round trip is only $1100. We've already raised $350.
So now I'm sitting at the gate waiting for my plane. I've never left the continent before and I'm really excited.
I'm even more excited to hold baby Ginevra in my arms and give her the sweetest kiss. Krabbe Babies are like nothing else. Super soft angelic beauties.
It's been a while since I've written I know. I apologize. It's just that I don't know how to convey what I am feeling without making everyone else sad. Here goes.
There are moments of stillness in the night when I lay awake and cannot sleep. My heightened awareness of Anaya always had me sleeping lightly. I used to fall asleep to the sound of her soft little breaths. Sometimes gurgley breaths. But noise all the same. Now the room is so still without those sounds that I have to get up, go to the bathroom, and go back to bed - just so that I don't lay there observing the silence and getting depressed. I take my rainbow frog that is approximately the size of a toddler, and I hold it to my chest with Anaya's prayer / love blanket. I imagine I am holding her, and the feeling of the stuffy is comforting. I fall asleep again.
I never knew how incredibly tired I was until fairly recently when it seems like my body decided it was time to cash-in on the sleep I owed it. I have literally slept for 18 hours straight three days this week. We're starting to sell off the things we had for Anaya that we have no use for right now and that aren't sentimental, but valuable and can help us pay the bills. For instance the breast milk deep freeze that we bought brand new one year ago. Her new car seat - (Britax super supportive baby-big kid), Etc.
It feels like a little bit of my heart peels away every time something of Anaya's goes out the door. I know it's just stuff. It's the memories associated with the stuff that I don't want to lose.
On the home front: I have never ever cared less about the appearance of my home. I know it used to be important to me but right now I have a huge stack of receipts/bills/papers/stuff on my desk, on my dresser etc. I cleaned the shower today and it was epic. I didn't do the rest of the bathroom. Just the shower. The rest wasn't dirty enough. I don't know if I'm lazy or crazy or what. I just know that housework does not inspire me at all. I haven't even finished unpacking. I'm afraid to go through those boxes. I never have guests. In Nelson people would just drop by. Here most of my friends work and then spend time with their families at night. I miss having company. Maybe then I'd be inspired to finish unpacking and keep my home it a straighter state of affairs. Don't get me wrong. My home isn't disgusting or anything. It's just that I'm a Virgo and I'm usually quite anal retentive about keeping things neat and tidy. It's really out of character for me to have not cleaned the whole bathroom at once...
The thing I find most inspirational right now is my work. I really love working for FundRazr. The people are great. I'm not just saying that. My boss is a really decent human being, who wants to change the world for the better. I find joy in helping others. In the past 2 weeks I feel as though I have made a significant impact on people's lives. I feel great knowing that I helped these people in their time of need. I will continue to do so. (But keep in mind I'm human and I rest on weekends and at night most of the time)
The last few days I've been really sick and tired. I decided that maybe a cleanse would help break me from my lethargy and exhaustion. I'm now on day 3 of the Master Cleanse. Yesterday I had a horrible headache. I'm feeling much better now and in the morning when I head into the office I hope I will still feel alright. I know that if I continue on with the cleanse for at least a few more days it will have an amazing impact on my health, and my spirits.
Brent has been working on his illustrations. Solara is having trouble with math, but is loving having her friends to play with at home. And Angel is an attention fiend who always wants to be cuddled up to something. I'm not sure why her breath is so bad but it's as nasty as mine is (cleanse breath). I think it might have something to do with her food containing fish. She has fishy breath. Ugh. My friend Penny told my that Golden Retrievers just smell bad - but that can't be right! She is unwittingly drawn to sparkles and when the crystal that hangs in the window spins rainbows around the room in the sun, she FREAKS out and starts running back and forth barking. When I type on my computer she sits and watches the reflection on the wall, occasionally attacking it.
I'm heading to bed now. I know this update wasn't spectacular - it's just the surface.
As I was coming out of Waterfront Station there was a single car in the parking lot. Across the front it said "All is Not Lost". It was for a data recovery service. It was also a message from Anaya.
Mostly I fear to tell you about my moments of despair. I think because those moments scare me. I don't want to be trapped in despair and depression and I work hard to keep myself out of it. Sadness is different. Sadness is alright and when I feel sad, I feel sad. I let it out. I cry. The other day I screamed and bawled into my pillow with sadness for more than an hour. It needed to come out. Then there are moments of despair that can creep in when I am really tired and stressed. Moments when I wonder what the point of being alive is. Moments where I can't feel love and don't feel loved. I think everyone has a wide range of emotions, myself more so. I am rather extreme sometimes. Either I'm really good or really sad. I try to find a balance and lately have been having more "Ok" times. I find the more I help others the better I feel.
Today I was on the train and I was sitting by the door. A young man (so cute-looked like Clark from Smallville) got on the train with crutches. I offered him my seat and sat down beside him. He smiled at me. I asked him what happened. He got out his dictionary and explained to me in a very french dialect, using broken English, that he had sprained his ankle. I encouraged his efforts to speak English and then switched to Spanish - where we had a bit more common ground.
Just then the police boarded the train and asked to see every one's tickets. I turned to Benjamin (blue eyed french boy) and he looked puzzled. I pulled out my ticket and showed him and said he needed to get his out. He searched through his wallet and found it. The cop came over, looked at Benjamin's ticket and said "You didn't scratch your Zone. I'm going to give you a $170 ticket." Well I could tell that Benjamin did not understand what was being said, and I was certain that he didn't know about scratching zones. I spoke to the officer.
"I don't think he understands you. He doesn't speak English well. Do you speak French?" "No, but my partner does." He waved his female partner over. She spoke gently and kindly to Benjamin and scratched off his zone and explained it to him. They got off the train.
Benjamin said "What was the man meaning?" I told him he was going to get a $170 ticket. His eyes opened wide and he said "Really?". I smiled and nodded. He thanked me. We chatted a bit about how he is here to learn English. Then it was his stop and he hopped away on his crutches. He dissapeered into the crowd and I smiled as the train moved on.
Then I got off the train and there in the parking lot was my sign.
"All is not lost"
Here's to another day of helping people, another day of being the rainbow in the lives of people willing to look up and see me. The way I look and see her. Everywhere.
I have discovered something about myself. It's an incredible strength. I find it is now a natural part of me. It is an ability to deal with trauma. My own, and others. An ability to stay calm, not panic, and take action. When my grandfather was dying in September - I helped the paramedics by providing suction and maintaining the airway. When Anaya was having respiratory arrest - I was giving critical information to the trauma team, suctioning her throat, venting her G tube, helping the nurse find the correct spot to take her blood pressure. I held her head in position so that they could insert the breathing tube down her throat into her lungs. I gave oral summaries to the trauma team, the pediatric ambulance crew and our ICU nurses. I held the flashlight for the paramedic in the plane as we flew through the rain in the night. I did it all again when we arrived at the BC Childrens.
Then I was the one who took the mask off. I maintained her comfort, ordered the morphine and removed all the tubes and wires. Then I gave her every ounce of love and energy that I could. It flowed out of me like a river and supported her soul in it's crossing. It was not a time of grieving it was a time of support. She needed my strength, and I had it. It was inside me. It was a rock in the storm. Unmovable, stable. Yet my hard had not hardened, my soul had not withered. I was not the only one there, yet I was so focused that they seemed to fade from my reality. The love swirled around the room like a rainbow tempest and then she was gone.
The body I held in my arms was not Anaya. It was only the body that she had inhabited. I loved her body too. I kissed her sweet cheeks, her fingers, her toes. I stroked her hair. Then I set her down gently on the bed and left the room and never went back in.
What a precious blessing to have learned this strength in my lifetime. What an incredible gift I can share with others. I noticed I can still do it. I can still manage trauma like a rock in a storm - with a wide open heart and a clear soul.
The day before yesterday I got a message asking for help.
"House Fire, children and husband dead - mother alone and in shock -Fundraising starting to help her."
I began researching and I found newspaper articles with dead links that informed people to head to a non-existant Facebook Page. I immediately took action, connecting with the administrators who had begun assembling a group of support. I started a Facebook Page that would match the media attention, migrated the existing users and started an online FundRazr to make it easier for people accross the country to donate while there was still immediate interest.
I combined my skills with dealing with trauma and fundraising with social media - all the while my heart burned with the fire of her loss.
I can see it all so clearly in my mind as if I was her. Running down the street towards the flames and smoke screaming for my children. Being held back from throwing myself into the burning wreckage to try to save them. The heat from the blaze is scorching, the air thick with smoke. Struggling to breathe I continue screaming and weeping with terror and grief.
Then the fire is out. The smoke clears. And they are all gone and I am alone, surrounded by people, but completely alone. I have nothing. No clothes, no toothbrush, even my favorite pillow is gone. My partner, my heart, my babies. My babies. Blinking, I feel the world caving in on me and I breathe staggered breaths. My chest aches as though there is a black hole in my heart and it feels like it will kill me.
That is how I imagine it. Deep and traumatic and raw. I can feel it. I know that one of the human body's survival mechanisms is shock. I know that right now she will be in shock. She may be unable to focus, feel anything, or even grieve. The whole world is alien and everything is messed up and confusing. I know that it will be that way for a while.
That is why she needed my help. Why she needs OUR help. We, who are in a state of strength, have the ability to reach out and make a difference in someone's time of need.
I am Camara. I am strong and I can help make a difference in people's lives - with a wide open heart and a soul filled with rainbows. You can make a difference too. Share this link and give this woman a moment of your own strength. If you know someone who needs my help - send them to me. I have the strength.