Notes on Life #4

The past month has been a whirlwind of activities with Europe, Caitlin's Graduation, end of year activities and family visits. As wonderful as it all is, I must say it's taken its toll on me and I was glad to head back to work and get a little bit back to "normal," whatever that means these days... So much to recap I hope I don't miss anything...

 

Traveling with Superman and Visiting Shoe Trees

Superman and the Shoe Tree

My parents are at a stage where driving down to Sacramento from Susanville is just too much for them. For them to attend Caitlin's graduation I decided to drive and pick them up.   Susanville is about four hours north of here and it makes for a long 8-9 hour day. Patrick was busy working and Caitlin was in school so I decided to make the journey solo.  Well the week prior to leaving the grandsons were over and I thought, why don't I take Christian on my Susanville trip, he is out of school and just a little bit bored. 

 

So Christian and I headed out on our adventure to Susanville. Our first stop, Starbucks, I gifted him with a Superman cape and hot chocolate - so we started the journey off right. Christian is an easy traveling companion and other than a few stops to run around the car with his cape flying in the wind, he was good to go.

I made Christian a promise that on our trip we would stop at the infamous "shoe tree" and make a donation of a pair of his old shoes. He was a little distressed to part with the "one" shoe with a hole in the toe, but he was anxious to throw the shoes up into the tree. I'm not really sure about shoe tree edict, but we made a wish when the shoe was placed in the tree. I've stopped at the shoe tree quite a few times over the years, I find it a good place to reflect and the shoes always make me smile. If you're ever on the rode to Susanville (HWY 395), take an old pair with you and enjoy the view.  Yes, shoes do grow on trees or perhaps what I should say is "yes, there is a shoe heaven!"

 

Caitlin's Graduation

The big celebration this past month was Caitlin's graduation from Woodcreek High School. It was a bitter sweet moment watching my youngest child graduate. Sweet to see her graduate and know that she is on her way to college and the beginning of adulthood.  Bitter to think that there are no more children at home and Caitlin will be heading to Sierra College.  

 



Me & Sofia (Peanut), Caitlin the Graduate, Proud Dad & Sister

Always a wonderful moment to see your children achieve these milestones. My sister Denise and her boyfriend Mike came out from Arizona for the event and we had a wonderful celebration with Caitlin's friends. The big news is that Denise and Mike are getting married, which is cause for celebration!

 

Support Group

The ALS Association provides a monthly support group for PALS (People with Amyotrophic Lateral Sclerosis) and CALS (Caregivers of ALS patients).  We've attended some of these meetings over the past few months. I've never been to any type of support group meeting before so the experience is new to me. At the meetings they separate the PALS from the CALS so I can only attest to the caregiver side of the equation.  On the caregiver side each person introduces themselves and talks about how ALS has affected them and the challenges they are currently facing. You can share as little or as much as you like. The caregiver side of the group is diverse ranging from current immediate caregivers, individuals that have a more distant connection like a family member that doesn't live locally to people who lost relatives to the disease either recently or years ago.

There are things that I've noticed and are difficult for me at the meetings. Firstly,Patrick & I are younger than most other participants. When there are 40 somethings in the group generally, its because they are the child of an ALS patient not the spouse. At the first group meeting this made me feel sad and more than a little "ripped off," but we don't get to chose these types of things so I try not to dwell on it.  The other thing that makes the meetings tough - at least on the caregiver side, is there is always someone who comes to announce that their spouse, father, or friend died.  They come with photos and many of the other caregivers know them from previous groups.

So, you're asking, why do you attend these meetings... well, I've considered this myself and I think its because there are so few people who understand the challenges with the progression of the disease.  It's really not like other diseases, and it's helpful to hear how others are managing things as the disease progresses. In fact, the contractor who we purchased the lift from was a referral from another support group member. So the information is truly invaluable. 

 The other reason is that there is comfort in knowing that PALS and their caregivers still lead quality lives and do remarkable things, even with such a degrading disease. I find many of the caregivers to be inspiring and I enjoy hearing the stories they tell about their PALS. I can't speak to why Patrick attends and it has to be difficult seeing people at various stages of the disease, but he seems to get something out of it too.

My hope is that someday there will be a cure and there will not be a need for support groups, but for now it does provide an invaluable service to all that attend.

Did Someone Say Road Trip?  "Get Your Kicks on Route 66"

Patrick and I have talked about taking the old Route 66 from Chicago to Santa Monica over the years. It's a long trek, 2,448 miles, and we estimate it will take about two weeks to drive and enjoy all the sights along the way. Over the years Patrick and I have done many road trips, even traveling at one time from Sacramento to Harrisburg, PA. There is nothing like the open road and I don't think there is anything more traditionally American than taking a road trip on Route 66.

 

The dates are still being considered, but it looks like August/September time frame at this point. Although the traveling is slowly getting more challenging we both value the time we spend together and the sights along the way.

Odds and Ends..

Pretty Feet

The girls took Patrick to the nail shop for Father's Day to get his first pedicure. I rarely do this, I find it strange to have someone "working" on my feet and it scares me that they have clippers. Yep, not my favorite thing.  For Caitlin, Corrinne and Patrick though, they had a great time.  If you're wondering... no he didn't get his toe nails painted although we tried to encourage it:)

 We are in the midst of planning Patrick's 50th birthday in September. Should be lots of fun. I want to say thank you to Pat Kennealy, for your email it was really sweet. If you don't know Pat, he is an old friend of Patrick's dating back to his EDS days. Pat does some of the best BBQ we've ever had and has agreed to help with the birthday party food. Patrick is lucky to have such a good friend.

Hope all is well with you and these hot days find you inside with a cold drink!

Things to Look Forward to...

 

July Denise & Mike's Wedding in Sedona, AZ

July Visit with Timmons' Family in Littleton, CO

August, Hot August Nights, Reno

September, Route 66 Trip

September Patrick's 50th Birthday

October 5 - ALS Walk, Sacramento CA

November - Anthony's 9th Birthday