OK, there is no way to get caught up from June 25. Every time I sit and think about it, I get overwhelmed by the impossibility of the task, so I don’t post anything. But several times in just the past few days as I’ve been typing out emails to friends, I’ve thought “oh, gosh, I should put this on my blog” but stopped, thinking that I need to get caught up first. Well, I gave up on that idea, so here we are.
So where do you start when you’ve not blogged in
three four months? With what I’m knitting, of course. I’ve not been knitting much, chemo-brain and neuropathy just make it very hard and unsatisfying. I even took a class from Andrea Wong on Portuguese knitting to see if that would help but learning new things just doesn’t work right now. But certain things just must be knit… like when a friend is having a baby boy after two miscarriages in a row. That’s pure goodness knitting.
And what was I doing while I was knitting? Listening to Danny’s excellent violin lesson. Speaking of Danny, he is having surgery tomorrow morning on his esophagus and stomach… this is the first time ever we are trying to do the outpatient surgery thing with him, so we’ll see how it goes. Danny’s going to be fine, the person who needs the prayers is Sara next door who has to take George at 530 AM.
And how is George? George is doing AMAZING things. He is on a medicine called Aricept, usually used for Alzheimers, but also apparently effective to improve cognitive function in children with Down Syndrome. I have promised several T21 club mama friends a whole post dedicated to the controversies about this drug and our decision to use it for George, but if I waited to blog until I had time to write all that up, it would be next June, probably. But anyway, George is a whole new person… very, very busy, very independent, learning new things every minute. He has even figured out Skype. You see, Emily moved to Canada
She is a freshman at McGill University in Quebec. So she has only been home for four days since June, between Idaho and Montreal. We skype almost every day, and George really thinks that Emily now lives in the computer. When the little green “online” button is next to her photo, he signs “Emily HOME!!!” and gets all settled next to me in bed to chat. When the little button is white, meaning offline, he’s very sad and signs “no… Emily home no” and just droops.
So he thought he had it all worked out, Emily now living in mama’s laptop, until one day Brian showed up on Skype. You have NEVER seen such profound anxiety in a four year old, ever. (Brian is in England visiting my sister for 3 weeks, more details in a minute) … Obviously, according to George, whatever took away his sister and got her forever stuck in mama’s computer, well, that same thing happened to Brian, and since there’s no evidence of Emily ever coming back out of that screen, Brian must be gone forever, too. So then, with the biggest saddest tears ever, he crawled off the end of my bed and looked all over the house for his brother. No luck. Even with the cognitive changes with the Aricept, he still doesn’t really understand about time…. and he absolutely doesn’t believe me that Brian will be home soon. We probably told him the same thing about Emily, so it serves us right for lying…
So back to Brian. He is spending three weeks with my sister, her husband and boys in Manchester, UK. Truly the trip of a lifetime, and I am so grateful to them for giving him this opportunity. With Emily and Sam having moved out, and my chemo and all, and two high-needs little brothers, and Dixon’s crazy work schedule, Brian has had a tremendous amount of responsibility these last few months. It’s never been all work, of course, he’s loving our school curriculum choices this year, and is playing on a soccer team that goes all over creation every weekend… but still, he deserves a totally amazing holiday and we’re so happy for him. His big dream was to go to a Manchester United game (see above) but AJ did even better, arranging for him to spend a day at the team training center, and to get to go into the locker rooms and have lunch there and everything. Coolest thing ever. He has tons of photos on his FB page, but this one was my favorite.
He flew to London as an unaccompanied minor, and oh my gosh, they sure protect those kids. I felt like I was signing my life away. But the plane got in over an hour early, and they had to keep their hands on him until my sister got there to get him, so they put him to work. I know he’s never going to be a USAirways ticket agent, but can you imagine how nice it would be if you were a stressed out stranded passenger somewhere to run into Brian behind the computer, calm and friendly and ever-so-competent, able to just fix everything in a minute and make it all better???
Let’s see. Then there’s Sam. I miss Sam an awful lot. He moved to Durham on August 10 to go to the North Carolina School of Science and Math…. a residential high school that’s actually a campus in the University of North Carolina system. Although he takes math and orchestra at Duke. I never claim to really understand what he’s doing, I gave up on that long ago. But he’s REALLY challenged, working with amazing professors, and it’s such an incredible opportunity. Sam hates Skype, so we’ve not run into the same troubles with George. He comes home for a long weekend once a month, and it takes George a day to warm up, but then they’re best buddies again. That relationship always brings me joy.
And me… hmmmm…. long story. and I’ve already typed 1020 words, and I have to be at the hospital with Danny at 6 AM. But I found a photo for you, with my best knitting friend, Lark. She came to visit this summer.
So, blog posts I have all in my head, just need to type out:
- Aricept and Down Syndrome
- What’s new with me and chemo and my big spine surgery scheduled for December 4
- We need to talk about lymphedema again, and the sorry state of mastectomy prosthesis options.
- The book that I have outlined, about developmental support and homeschool preschool curriculum for children with DS and/or other language delays. (I promise a blog post about my book plan, will I ever actually write the book? I guess every day of chemo increases the chances a little… or decreases the chances, since my own cognitive frustrations are… well…. frustrating.)
- and knitting and spinning and the big dye party we had this summer
- updates on the Archer boys, the orphans from Bulgaria. You helped save their lives and I can’t wait to show you how their doing.
And now it’s time for bed. Sorry it’s been so long. Now that I’ve gotten over the “how in the heck am I going to fill in four months worth of blog” concept, maybe the next post will be easier. I’ve missed you.