The heavens opened today and the sun shone down from a crisp blue sky, catching diamond glitter flecks in the air. It's days like today we find so much joy in being alive, sharing this beautiful day together. Anaya has had a good day today, with less seizure activity than before. I've been asked to bring Anaya to see the world expert in Krabbe Leukodystrophy in North Carolina. Dr Escolar may be able to suggest treatments, meds, and therapies that will help keep Anaya comfortable as she progresses on this journey.
I got our passports in order but finances are an issue. It will be a week long trip across the continent. 2 days of travel each way, driving and then flying from Spokane. I'm going to ask family and friends to help us pay for the trip to take Anaya to see this specialist. I think it is very important that we take her as soon as possible. Anyone want to help me organize a fundraiser?
On another note, My older daughter has gone into an emotional slump. Being 8 is the new 13?I can't help but wonder if my sadness has affected her. She's been feeling bad about every little thing and I'm distressed about how to help her and make her feel better. She says she feels "guilty". Guilty for her thoughts. I'm taking her to the doctor. I think she needs a councellor or a child therapist. We can all use a little help to get through these times.
I think we found a home in Nelson that is pretty perfect for us. It has 3 bedrooms and is cute and clean. It's on a direct hospital route. It's yellow and green with big windows. I'm stoked about it. We just need to make sure we can fit our bed up the stairway to the bedroom before we sign a lease.
The community futures business project I'm working on is coming along. It is "Nelson staffing" and basicly I find temp jobs for Brent and I to do for now, until we can hire a few employees. I'm finishing up some marketing materials and will be pounding the pavement distibuting them this week. Hopefully everything will stay sane. Sometimes I feel like there is no way I can keep going with all these things- but I have to trudge on. We need to pay the bills. I'm glad to have the flexibility to be with Anaya when she needs me. I wish I could be with her all the time. Our moments are so precious.