I must give a huge shout out to Air North who keep helping us out in one way or another. If it’s allowing us that little extra bag or getting a wheelchair for Ruby when she’s feeling super tired out, they are on it and more. I love you Air North. As much as we can, we always travel with them.
Well, back from Edmonton, it’s here there and everywhere for us. We all have colds, sore throats and headaches. Ick. Icky sticky cold. Holling blows his nose on my shirt in the airport, Ruby is running around like crazy getting upset with us for telling her to slow down before she……whoops, wipes out again. I think the one big challenge for a kid with brain surgery and cancer like this is that it changes their perceptions of their abilities post treatment. Ruby is very very frustrated with constantly being told to slow down and be careful and watch out and slow downslowdownslowdownslowdown. I don’t blame her, if I was my own mom, I’d need earplugs. I’m very annoying.
We saw Dr. Trethart in Edmonton and had lots of testing down to assess her heavy metal load and other things. She was very brave and just did what was needed though every blood test etc comes with a load of instant terror and trauma. It’s challenging to not just pick her up and say “ok, no more bloodwork, this kid has been through enough!”.
The changes we’ve noticed with Ruby are probably more social than anything else. Imagine being locked up without kid interaction (except for your hilarious 4 year old brother) and then getting out in the world and being unsure of how to be 8. Both of my kids are good communicators though so we just keep working through it. I’m a bit “old lady” so I have to find my 8 year old too. Top of Holling’s list right now is to have friends. He makes friends wherever we go and then runs up to me to announce it. I think the focus of the summer is getting him hanging with some wee ones his age, ones that live here. Ruby is all about the older girls. She is banking on some serious Wendy and Brenna time. Her bookworminess has taken over again and I find her hiding in a variety of cosy reading nooks with an Ivy and Bean or some form of fairy book. I’m super happy that she’s able to read. That was the one thing she missed the most when her vision went nutty.
Well, it’s off to make lentil soup and some buns. Kids are watching BubbleGuppies and taking dance party breaks to Primus. Yes. My kids love Primus. Maybe they will make an awesome rhythm section one day! Paypaya (better known to Primus fans as Duke Lion) is their fav and they zoom around the house in dresses and wigs. Heeeelarious. Ciao bellas and thanks for being patient. I had to get to a point where talking to anyone or writing stuff didn’t put me in an angry place. Processing this is a long long road. Just as Ruby’s journey is a long one. As much as “they” say her cancer will return placing her in palliative care as a 100% guaranteed situation, I have a sense that this isn’t true. But it lingers and eats holes in my hope. So building protection from negativity is tricky. Being the Indigo that I am, anger has been a great motivator in my life: dashing the expectations; striving beyond opinions; defending the undefended, that’s been my path. Now I need to be motivated by a sense of rightness not righteousness. Different fire, same heat. Yes. I’m pontificating pre-coffee. Maybe I’ll go catch up on that and then fold the endless laundry. Hugs to you all. Every wish, dream, prayer, positive thought sent into the universe, to your god, to whatever you believe in counts and shifts the energy that surrounds us. Thank you.