Our Family's Journey: Notes on Life #8

My last Notes on Life post was right after tax day. The irony is that I'm doing this blog, but I still have not filed our taxes... we are on extension. Does anyone know a good CPA? - Just kidding... True to all predictions this has been a horrible fire season and as I write this I look out to a smoke filled sky. I chased a few pot smokers out of the "wetlands" next to our house the other day. Not because I cared so much about the pot smoking, but over the past 15 years I've witnessed a number of fires next to our house and right now the ability to evacuate and rebuild would be a bit overwhelming for us. Don't be confused by the term "wetlands," right now it's an open space with very dry brush...

The past six months have had there ups and downs. As always with the fall approaching, we are busy planning out our holiday decorations (Halloween, Thanksgiving and Christmas) and ALS Walk t-shirts... Here are some of the highlights:

The New Front Yard
The nicest change we've had over the past few months was relandscaping our front yard. We decided to do this because of the drought in California and the strict limitations on water use or basically, we were tired of looking at dead grass. After considering the possibilities and recognizing that the space could be much more usable, the change made sense. When the house was built there was a step from the front walk way to the porch and a step down to the porch in front of the window, essentially it was completely non-accessible to Patrick in his wheelchair. So, we worked with a landscape designer to create an environment that reflected us, allowed access for Patrick and made it enjoyable to spend time outside.

Here are some before and after photos...

We never spent time in the front of the house until now (when it's not too hot or smoky) we sit on the porch, chat with folks walking by and listen to the water streaming from the fountain. It is a sanctuary.

The tricky part of the new front yard landscape is how to manage all our holiday blow-up decorations. Patrick and I are hard at work on this issue and we'll post pictures in the months to come so you can see the outcome. I was a bit surprised that I've had a number of neighbors ask me how our holiday decorations will work... And here I always thought they were just for my own entertainment.

To my ALS patient and caregiver friends, I've come realize that we spend quite a bit of energy in the early portion of the disease trying to scratch off items on a bucket list. I support this and we had a lot of fun travelling in the early stages of the disease. But, as time progresses, travelling becomes more challenging, so don't neglect focusing on what brings you happiness in your regular daily living. You will spend a lot of time at home, make it yours, redo the front yard, get a funny dog that makes you laugh or buy the biggest damn TV you can find, whatever brings you joy in the day. One of my caregiver buddies, replaced a small living room window with a large window so that his wife could view her garden throughout the room. It is truly lovely, both the window and her garden.

Alexa

A couple months back we received a surprise package from my sister Denise and her husband Mike. It contained the new Amazon Alexa (formerly, the Amazon Echo). Patrick and Caitlin immediately began setting up the device and purchasing the much needed accessories. Alexa is a voice activated device that allows you to turn on and off lights, manage your shopping list, access your calendar, play music and many other functions. It is also great fun for the grand kids because you can ask her a variety of things and she responds with funny replies. She even tells jokes.

As mentioned in my prior blog Patrick's speech is declining, so the voice activation doesn't always work for him. When we initially got the device he asked Alexa, "how do you connect your calendar" and she responded "I added canned ham to the shopping list." Which was sad, but you have to chuckle at these things. On a positive note, Patrick's computer voice Alexa understands better than anyone and he has the additional option of issuing commands through the computer.

This is a new device and it seems to have really taken off with features being added on a weekly basis. The automated house that many of the more famous ALS patients have is really out of financial grasp for most of us, but Alexa is the start of something with great potential. A huge thanks to Denise and Mike, it really was a thoughtful gift.

Our Continued Search for the Past
We spend a considerable amount of time researching our family trees and corresponding with cousins (we've met some wonderful distant relatives by collaborating on family histories). I think there is a point in our lives where we wonder about the people that came before us; who they were, where they came from and what trials they endured. I believe our ancestors live in us both spiritually and through our DNA. It's amazing to think of all the pieces that had to fall into place to make us, us.

So our search for roots continues... Some of our family lines we trace a great distance back and others we have dead ends. Throughout this journey we have found some interesting relatives: famous or infamous. The stories we've uncovered range from inspiring to tragic. Patrick is related to Mickey Mantle and my 10th great grandmother was Mary Bliss, the first woman in Massachusetts accused of witchcraft.

One of Patrick's family lines goes all the way back to the Mayflower 1620. A gentleman by the name of Stephen Hopkins is Patrick's 10th Great Grandfather. Stephen was a colorful character and with his wife and children sailed on the Mayflower to America. This was not his first voyage and prior to the Plymouth Colony he was part of the Jamestown Colony. He was expected to help the colonists become established in the new world. Because of this direct lineage we are working on applying for membership in the Mayflower Society. This has been quite a tedious task with all direct relationships from Patrick to Stephen having to be proven.

UC Merced

Looking at Colleges
We are touring and researching various college options for Caitlin. We visited the California Maritime Academy in Vallejo and UC Merced. Both of these colleges have solid mechanical engineering programs and we were impressed with both. Other colleges she is considering are UC Davis, University of Nevada, Reno, and San Francisco State University. She refuses to consider CSUS, which I think would be awesome, not sure her hesitation, both Patrick and I are alumni (that certainly can't have anything to do with it:))

She is in application phase and will start next fall at her new college. For me, considering her leaving is very bittersweet, but it is always the way, children must leave home.

Touring UC Merced

Walk to Defeat ALS, October 3rd at Raley Field
The Walk to Defeat ALS is Saturday, October 3rd and we are busy putting together t-shirts and logos! We hope you can join us for this event it's a great cause, nice people and a fun day! A huge thanks to all that have contributed to Team Timmons either by walking or donating. There are so many ALS families in need and the Association helps to provide them services on a "shoe string" budget. You can still join us, here is a link to our Team Walk page... Click Here

Odds and Ends

We were surprised when Corrinne told us that the boys (Anthony & Christian) had not seen Star Wars. One of my fondest memories with my dad was driving to Reno (2 hours from Susanville) to see Star Wars when it was released. We waited in a line that stretched at least two city blocks. So, I knew we had to share the Star Wars experience with the boys. We invited the boys over and surprised them by setting up the movie in the backyard. We just purchased a projector for our holiday decorations and Patrick thought how fun it would be to watch a movie under the stars. So we put up a "screen" on the backyard fence, rearranged the furniture and popped popcorn.

Every fall for the past 25 years, Patrick has participated in a Fantasy Football league with a group of past fellow Electronic Data Systems (EDS) employees. A couple years back one of the guys quit so I joined the league with my famous team, "The Ball Busters." Not to brag but last year The Ball Busters were undefeated (oh, wait that is bragging.) Well, the league started back this past week with a bang, yeah I lost my first game.

Hope all is well in your world. Here are a few other family pics from the past six months...