As the summer winds down the activity level in our household is ramping up. Back-to-school shopping, garage storage reorganizing and car decorating are all indicators that Max and Olivia are ready for the new school year. Olivia headed off today for her first day of her Senior year with a giant smile on her face. Max is dutifully organizing his boxes of college gear and getting packed up for his return to Point Loma on Sunday. Wilson is busy keeping in tip-top physical condition with his daily workout regimen and ruck-marches and with Rolf at work that leaves me to hold down the fort at home. I have slowed down to a literal standstill making my fear of missing out escalate to an all-time high. Just this morning, for example, Rolf and Olivia went out to take the traditional first-day-of-school pictures and it was so hard for me to not be out in the middle of it. The family has their full days of activity, constantly coming and going (as they should and as I want them to)…I watch them come and go with a deep longing to be a part of the action. Unfortunately this is the new normal and I better figure out a way to be at peace with it before it drives me stark mad.
A few months ago I mentioned that I got a speech-generating device. One of my frustrations has been the lack of technical support I received from the company. My speech pathologist encouraged me to work with the technology before I actually needed it but the company rep with whom I was supposed to train was never available. ‘Turns out, it’s all a moot point after all because I lost use of my hands and my ability to communicate effectively at the same time. As a result I am now in the process of getting eye gaze hardware installed in the unit. It is very intuitive and easy to use and will be a game-changer for me in my ability to communicate my needs so please pray for a speedy response from insurance and all the powers-that-be. I really would love to have this resource while I can still move my eyes. So much of this process has been trying to get ahead of and prepare for an unpredictable disease which is particularly difficult when you’re also trying to conserve your energy for things that really matter. If only we had a crystal ball. Ha Ha!
Speaking of technology…we pulled out Rudy’s old iPad a couple of weeks ago to do some streaming on an old TV and were delighted to discover a video he recorded on our road trip along Route 66 the day before he passed away…Technology is amazing!