Our Family's Journey: January 2017

I think we can all agree it's been a strange year. Between the horrible massacre in Florida, the untimely deaths of many entertainers, and the Presidential Election - it was not an ordinary year. Since ALS, I've often felt like a stranger to the outside world, like a child with their face and hands against a window looking in at a store window. In the past, the outside world seemed simpler, more romantic than my life, but not this year. The outside world looks as foreign as the strange inside world I live in. So, my scattered thoughts this year are probably a combination of both the inside the world of an ALS caregiver and an outside world that appears to be a bit chaotic. This blog recaps our past year, "the good, the bad and the ugly" and looks to 2017 for what it may bring.

The holidays are always a bit of a mixed bag for me, the monkeys I've spoken of in the past

On the Porch Bundled up with Jake

have returned with a vengeance. I've struggled with writing a blog over the past month, somewhat due to my own busyness with the holidays and somewhat because I find myself feeling a bit confused by my own thoughts. Writing this blog has always been a bit of therapy for me, it forces me to sort through my feelings and put what's going on, "on paper." Frankly, it calms the monkeys in my head.

I've never gotten into new year's resolutions but each year I've always taken time to reflect on the past year and consider all the possibilities for the next. I'm afraid it's now a huge mix of emotions and feelings, reminders of people I've lost, realistically considering what the next year will bring, and considering the past year with it's losses and changes. However, with all of this, there are always good things to consider - so it's a mix.

Reflecting on 2016 - A Year of Loss
I can't recap the past year without recognizing Patrick's continued ALS progression. So here is a list of changes over the past 2016 - in no particular order:

Feeding tube insertion and adaption
No longer standing and modifying routine and clothing to accommodate
Increased coughing and phlegm
Changing power chair controls from hand to head
Constipation and bathroom issues
Loss of Speech

Such a crappy list, but to really consider 2016 they can't be ignored. Another list is all the folks we lost in 2016, both personal friends and famous celebrities. The many talented entertainers that died this year including Muhammad Ali, Prince, Leonard Cohen, and Carrie Fisher, to name a few, their deaths impacted us all. For me these folks were part of different phases of my life from my childhood to present. Mixed in with these famous deaths are the death of friends over the course of the year. There is no way to consider the past year without recognizing the people we lost.

Reflecting on 2016 - A Year of Joy
But frankly, there were some really wonderful moments in 2016. Here is a quick list of only a few of the things that brought us joy in 2016:

Christmas Lights

Fantasy Football Guys and Gal!

Family Dinners
Birthday and Holiday Celebrations
Team Timmons and the Walk to Defeat ALS
New Family
Family Visits
Grandkids
Fantasy Football - Patrick WON after 25 years!! (kind of like the Cubs)
Goats
Days on the Porch

Weather Station

We've continued our genealogy journey into our family histories and connected with distant cousins. These connections have enriched our lives with new friendships, family stories, and histories that will live on through our documentation. Patrick became an official member of the Mayflower Society having descended from Constance Hopkins a passenger that traveled over with her father Stephen Hopkins.

For Patrick's birthday in September, we got him a weather camera, called the Bloomsky. It captures real time photos of the weather at our house and does 24 hour timelaspe of the changing sky. Justin built a wonderful stand and Caitlin and Patrick work to keep the software going. It's been a bit of a work in progress, but seems to be working nicely these days. Check it out... Weather Camera at the Timmons' House

We've been so blessed to get to know and spend time with members of my mom's biological family. It is interesting how comfortable we all already are after only getting to know each other this year. My mother said to me on the phone the other day, how thankful she was that I found them. It reaffirms my belief that we are all connected to each other.

Family

Anticipating 2017
Patrick and I have had some difficult conversations over the past few months centered around things to come. When you're given an ALS diagnosis, with it comes an estimation of time - the average life span is 3-5 years for an ALS patient. This past Dec 21st marked the 4 year anniversary of Patrick's diagnosis - not much of a date for celebration, but a date we remember nonetheless. Although Patrick has had a slower progression than many of the patient's we've known, he still progresses and when these discussions occur, it's with a recognition that time is limited. So, anticipating 2017 is difficult, we can assume that his progression will continue with a reduction in what's left of his mobility, elimination of his ability to eat orally and speak only through the computer - that is pretty much assured. His respiratory will likely decline to what extent is unknown. So, I start this section with a difficult, but honest note - 2017 is going to be hard.

But with all things there is hope, love and beauty in this world. Due to this, I'm sure the upcoming year will hold some amazing moments, time with cherished friends and family, and people/events unknown that I will be grateful for... in all things there is grace. So here is my final list... a list of things to look forward to in 2017...

Caitlin heading to a 4-year college (mixed feelings)
My 50th Birthday Party
My Mom's 80th Birthday
Grand kids
Holiday and Birthday Celebrations
Beautiful Sunrises
Time on the Porch

So, I welcome 2017 and say goodbye to 2016 with a bit of mixed emotions (kind of like the Rolling Stones song, "you're not the only one with mixed emotions, you're not the only ship a drift on the ocean." In the New Year, I wish you all good moments and more importantly the ability to recognize them.

Here are some photos from 2016...