Thursday, September 15, 2011

First Words

Today Anaya and I had our first speaking engagement.... But the day didn't start there...

Early in the morning the smell of skunk began to waft in my face through the window. We were parked in the driveway of Diana's house...and the local skunk must have let loose. Anaya woke up too and made a little noise. I got up, closed the window, used the bathroom, drank a glass of water and went back to bed. It was five am.

Anaya communicated to me through her grunting noises that she was uncomfortable. I ran my hand over her body and tried to figure out what was wrong. She was chilly. The night air had seeped through the thick fleece blanket. Quickly I changed her diaper and rolled her onto my chest to cuddle her and warm her up. We instantly fell back asleep and were woken two hours later to he sound of the alarm.

I rushed to prepare to take Anguard back to the shop. Brent and I loaded a few last items, and headed back to Hywood. Brian, the Heavy Duty mechanic and Matt the Manager were there to greet us. Just a few more things to fix up so that she passes the safety inspection...she'll pass by the end of the day... FANTASTIC.

So we loaded Anaya, Buddha, Angel and I into the van and went uptown. My friend Carol took us out for breakfast and it was truly lovely. It's been a long time since Carol and I spent time together and I have missed her so much. The food was incredible. So delicious. The best breakfast in Nelson is at the Full Circle Cafe on Baker Street. Carol treated all of us to a dish known as veggie hash. Sounds funny I know. But it's amazing.

Two soft poached dark yolked eggs sit atop a mound of freshly fried potatoes and yams, sautéed in a spicy curry sauce. Chunks of goat cheese are embedded throughout the potatoes and the whole thing is smothered in Almond Miso gravy. Mmmmm. Brent and I both commented that it was too bad Anaya was sleeping as she might have enjoyed tasting the gravy.

After picking up some Velcro strapping Anaya and I walked down to see the Doctor. Dr Garcia examined Anaya, gave her a clean bill of health and said she is fit to travel :) She also updated Anaya's prescriptions and now we have enough to last several months.

Anaya has gained weight too :) she is now 10.5 kg. Approximately 24 lbs.

Then we went back to Hywood, gathered a few things from Anguard and hit he road to Castlegar. The drive was beautiful. The highway meanders along beside the west arm of Kootenay lake and then it turns into a river that falls down five dams before Castlegar. It generates a lot of power for both the USA and BC. Anaya, being blind, couldn't see the dams...but we told her about them. Brent sat in the back of the van and held her hand, suctioning her when needed. I drove. I get carsick easily in the back seat.

Pulling into the college 15 minutes early I pull out my study materials and go over them one more time to make sure I've got my facts straight. Only 2 states test for Krabbe. New york and Illinois. BC screens for 22 diseases but not Krabbe. There are thousands of children living and dying of leukodystrophy every year.

Brent lifted the stroller from the back of he van and helped me to gently place Anaya in it. She lay upon a nice fluffy pillow and we attached the suction and oxygen and headed inside.

Mike Coules met us at the door to the class room with his HD video camera. We stood and chatted for a minute as the room was rearranged into a circle. The instructor, Rosalyn Grady, a spiritual elder with the council of 13 grandmothers, welcomed us and introduced us to the class.

Sitting down I found myself facing an entire room full of beautiful souls. I could already feel their interest in what I was going to say. Brent sat directly across the circle from me to lend me his support throuh eye contact. I lifted Anaya from her bassinet and said "Hi, I am Camara and this is Anaya. Anaya has Krabbe Lekodystrophy." I then launched into telling her life story.. The ups, the downs and the incredible lessons and love we have learned from her. I spoke about newborn screening and stem cell treatment. I spoke about depression and relationship issues that can occur in parental relationships of children with special needs. I spoke about the family dynamic and Anaya's beautiful and healthy older sister, Solara. I spoke about everything.

When I was finished half the class was in tears. They then took turns telling me what the learned from what I had spoken about. It was beautiful and gratifying. We made a big impact today!! I set out some bumper stickers and just about everyone in the class gave a financial gift and took away a bumper sticker. :) How awesome is that. I brought them just on the off chance somebody might want one. I had no idea how popular they would be.

After that we went home to Anguard, took the dogs, and Anaya for a walk

and found a place to park for the night. Whew!! Long day.

Anaya is complaining with a little whimper... I'd better check her tummy. I will post video of our talk today ASAP :)

Lots of love to all of you.

Location:Castlegar, BC

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