Our journey started here. In the shop. Anguard needed to have an exhaust manifold repaired and some work done on the breaks to pass the safety inspection so that we could be CERTAIN that she will get us where we need to go, safely and surely. Bryan the mechanic worked hard, staying after hours to get her fixed up. He met Anaya. He stood and took in the beauty of her. Her cheek pressed against my shoulder, her long wavy gold hair floating on the breeze. Wiping a tear from his twinkling eye, he stroked his beard and said "It's a damn shame." Then he disappeared beneath Anguard again.
Since Anaya's birthday, no, since a month BEFORE Anaya's birthday every moment has been full and busy. Anaya was very sick with pneumonia and almost died, then we were busy getting ready for her party, then we had the party, then cleaning up and sending out auction items, then packing up the house, moving into Anguard the Anaya Mobile Care Unit, taking stuff to storage, having a yard sale, donating small clothes and toys...the list goes on. It was an intense time.
Finally, with everything done we headed on our way. Our plan was to stop at my Uncle's house in Idaho three hours south of Nelson to visit with my grandparents, and then take the interstate across Washington and up to Vancouver - as a way of avoiding the steep mountain passes on Canada's Hwy 3 which would have consumed more gas and been harder on our new breaks.
Having left Nelson at 6pm on Friday night we arrived at my uncles after dark. We parked and settled in and went to bed. In the morning I awoke feeling an urgency and a need to go into the house. Brent was still in bed with Anaya, they were sleeping so peacefully.
Grandma and Uncle Brett advised that we should continue on in our mission to take Anaya to Canuck Place in Vancouver. They said that Grandpa had loved Anaya and that he would want her to get what she needs, and for us to get what we need. After four days at my Uncle's we left and headed west on the interstate.
We didn't get too far before in became apparent that there was a problem with the battery. The headlights became dim. I pulled into a large parking lot to investigate. Turning Anguard off I couldn't get her started again. We had to get a boost from a passing kind soul, and then decided to park for the night and figure out the problem in the morning.
I called the mechanics in Nelson. They advised me that perhaps there was a loose wire or that the old alternator had finally quit. I found shop nearby in Spokane Valley and the manager, Andrew, was very helpful. They diagnosed that the problem was a frayed connection that had caused the alternator to fry. He replaced the alternator and the cable and we were good as gold. Finally we hit the open road. We crossed Washington, we saw windmills...we drove by the Gorge..
It wasn't until we arrived in Seattle that Anaya developed a fever. Brent had been attending her the whole time. Sitting beside her, reading her stories, feeding her, suctioning her...caring for her. We imagine she must have picked up a virus at my Uncle's house as his roommate Debra was sick with a cold. Anaya started to get really congested and was not well. Angel could tell something wasn't right so she cuddle up to Anaya and gave her some puppy love. Anaya loves feeling her soft fur on her skin. We gave Anaya some Tylenol and exposed her skin to cool her down. It was a warm day so we put a fan on her to ensure that she would not overheat.
I was determined to get to Vancouver and Canuck place. We pulled into Bellingham WA to get gas. Fueling up went well. Getting out of there didn't. There was an option to go either right or left. Left went around the pumps and back to the road. Right went around the building and back to the road...or so I thought. I chose right and ended up stuck in a small dead end behind a McDonalds. The young woman who had just gotten off shift was sitting in her car ahead of me, completely blocked in. I got out and went to her window. "I'm sorry, I thought this road went around the building. It's going to take us a few minutes to get moved. We have to take the Van off of the Tow Dolly and then back up and turn around. Brent worked on the Van while I stayed and cared for Anaya.
Finally I turned around, pulling the tow dolly to the other side of the parking lot to put the van back on. Suddenly a lady comes running and waving her arms. Apparently one of the chains from the tow dolly had slipped off, and attached itself to a man-hole cover that I was pulling willy-nilly across the parking lot. AHHHH!
After that I was a bit frazzled. Anaya needed care and it would get dark soon. We decided to stay in Bellingham and move further in the morning. The night was long. Anaya was sick and gurgley. She had mucous coming out of her mouth and pouring from her nose. Her oxygen tubing was covered in a layer of slime that we needed to clean up every five minutes. Come morning in was definately clear that she was over the worst of it. Canuck place called and said that they had to cancel our stay because there was a child who needed end of life care. This happens frequently as end of life patients are priority #1. I told them that it was alright because Anaya had just gotten a cold and we knew that it would be best for her to stay away from the other children, for everyone's benefit. They said that they actually don't allow sick kids...so no Canuck Place for us this week. Maybe next week.
We drove the last few miles to Vancouver and arrived at my friend Natalies house. We parked there for the night and spent a few hours decompressing and caring for Anaya. The cold has already started getting better. She is clearer in her breathing and is more awake. It seemed like she slept for two days.
This is the little princess in her bed that is next to ours in Anguard. My friend Emily made the pillow for her :)
Ever since we moved in it seems like Anaya has been sleeping better. She is comforted by our constant presence and is cared for with love 24 hours a day.
I am striving to stay on the positive side of death right now. I must stay strong for my baby girl and my family.
This is Natalie visiting us for morning coffee / tea. I have OSO beans!
Today Anaya is doing much better. We are getting ready to prepare for our kick-off of Anaya's Walk to Save Babies! I have been contacted by an executive director of a local school board who wants Anaya and I to come and speak to the board about presenting to schools in the area over the next two weeks! We are very excited about it and hope to make a real difference in the way children view other children with disabilities.
I'm also beginning to contact the medical schools, nursing schools etc, as I am able to give them a presentation regarding newborn screening and the progression of infantile Krabbe Leukodystrophy - straight from the horses mouth. As this is a rare disease many of them have never heard of it, and many will see it only a few times in their lifetime of practice.
It is incredibly important to recognize the early symptoms so that a child can receive treatment. I will walk them through all of it. I have a science background and I understand the chemistry and biology behind Anaya's disease. I will also bring a human face to it, exploring the depth of love and emotion we feel, and relevance of Anaya's life.
While we are here in Vancouver I have a new phone number. It is @778.997.0593@ please give a call if you have love to share or something important to say :) - Camara