First Day of School and a little bit of God

Caroline started 8th grade today, and when I asked her how it went, she said "Fantastic!" very enthusiastically.  That made my heart happy.  I want her to love school both academically and socially.  I want Dolan to find his way in the world.  I want Paul to be happy.  Really, in the end, if I know all those I love are taken care of, I am okay with whatever happens. 

Not to say it doesn't still sadden me a little when I see someone on a long walk, with long, strong strides like I once was able to do.  Then I remember that I am still walking, albeit slowly, but under my own power.  I am thankful for that.

A friend prayed over me today (although I joked about separation of church and state, as we were at work).  I am a believer of sorts, in that I don't disbelieve, and what I pray for is simply acceptance, grace, and strength.  What truly strengthens me is the kindness of the people around me.  If one has to be in a difficult medical condition, Havre is undoubtedly one of the warmest, most embracing places to live.  The community is astoundingly supportive of their own.

My right leg muscles were having a great time dancing to their own beat last evening while watching the March on Washington on PBS.  It's interesting how they move of their own accord while in a restful state.  I guess that's why PALS get tired so much...near-constant muscle movement.  Too bad it doesn't help me lose weight.  :)  [I know, I know, that will come soon enough.  Too bad I can't enjoy it while still on my own two feet!]

Home in Havre

Saturday morning with the family all together.  Going to enjoy the last real summer weekend.

School starts back up for Caroline this Wednesday...8th grade!  I aim to see her graduate high school...a doable goal,  even with ALS.  Heck, I aim to see her graduate COLLEGE!  Dolan, too!  I just can't picture it any other way.

 

Billings and Blue Moons

In Billings, Montana, for the week.  Last night the blue moon rose so beautifully with added copper lustre due to the Yellowstone and Red Lodge fires.  Tonight, we had dinner with our favorite priest, Father Bob, and talked Catholic politics and good music to our hearts' content.  Pope Francis gets two thumbs way up! 

Today was a little distressing, since my arm muscles decided to let themselves be heard from, and not in a happy way.  I can handle the legs slowing me down, but please let the right arm especially hold on for a long time.  It'll take a while to train my left to do the job my right has done for 53 years.

Indeed each day is joyfilled

Had a great evening celebrating my dear friend Debi's 50th birthday...I had to get her to the surprise party without her knowing.  I could use my ALS to say I needed to talk with her over a drink!  Sadly, I did have a reason...seeing a stranger incapacitated in a wheelchair yesterday brought me down to earth about this disease and where it will likely lead me.  But it was still very convenient in pulling her away from her task of putting together a video presentation of Kris' life for tomorrow's memorial service. 

Did I mention I live in a very small city in north central Montana?  Everyone knows everyone, almost.

In talking with friends later, the woman asked if it's easy or hard to talk about my ALS.  Paul and I both quickly responded, "easy."  It's much harder to tell people about it for the first time, because we are not sure of their reactions.  Kellee cried and had to stop cutting Paul's hair when she found out (because Paul mentioned Sturgis SD as a side trip on our way back from Rochester MN).  we don't want our friends to be sad.  This is what it is, and being given the gift of time to say goodbye and have fun with friends and family is a very fine gift indeed.

Thinking of all the Bakkes tonight, and of Debi still working on the video at 10:30 p.m.  Our prayers are with you all.

Hot and Green

Mowed two big lawns.  The lawn mower is a good support, but the 85 degrees and inclines did me in.  Thank goodness we have a parachute hammock strung between two shady trees.  Nice to lie and swing and look up at the blue blue sky through the branches.

I love mowing lawns, and will do them as long as my legs keep working.  And my right arm agrees to push!

Chance to say goodbye

We lost a friend this week...a 45 year old died unexpectedly from a heart attack.  In talking with a coworker, who recently lost her husband after a long illness, but also lost her adult son to an accident several years ago, we decided that being able to say goodbye can make all the difference to the people left behind.

I am thankful to have this opportunity to know my end can be coming sooner than I might wish, but that I can make the most of each day, and be sure to tell friends and family that I love them.

Rest easy, Kris, and our love to your family.

If I never see Ireland

On July 31, 2013, I was diagnosed with ALS.  This was not a bombshell; we have been thinking this was a strong possibility for a few months now, as the doctors struggled to determine what was causing my right side weakness.  I had wondered how I would react when a doctor actually said “it looks like it’s ALS,” and I think both Paul and I took it well.  Stoically, perhaps, although tears were shed by me when I tried to express how the only real sadness is thinking that I will miss Caroline growing up.  Even now, that can bring on a wave of sadness.

ALS (amyotrophic lateral sclerosis) is a wicked disease that slowly robs you of the ability to move your muscles voluntarily.  Your senses and your mind remain intact, while everything else shuts down.  When I think about this, and I try not to too often, I feel like it’s the worst thing that could happen.  Then I work on myself to get some perspective.   People are faced with difficult challenges all the time.  Cancer is a wicked disease that knows no boundaries and has touched the old, the young, and everyone in between.  Cerebral palsy robs children of an easy childhood.   COPD and asthma steals your breath away, literally.  Violence robs us of people suddenly.  ALS is just one other type of disease that, while admittedly terminal, is only limiting if I let it be.

When confronted with a terminal diagnosis, people often decide to do things they never have done but might have wanted to do.  My brother went skydiving with his son while fighting the cancer that was to kill him shortly afterward.  Other people take trips, write books, visit family.  Each person’s journey to the end is as personal as they are, and as variable.

I do not know how long I have left on this planet, but not one of us really knows, terminal disease or not.  In the end, if I never take that trip to Europe with Paul that I have wanted to, or see the Chinese Wall in the Bob Marshall Wilderness (or the Great Wall of China, for that matter), if I am able to see beautiful sunrises and sunsets, lovely days of blue skies, tremendous thunderstorms that remind me of Nature’s power, rainy days that refresh the land, and a soft, quiet snowfall, I really have seen the best the world has to offer.  If I see children play and hear their unrestrained laughter, and can still listen to the music of the world and my family’s voices, I will be happy.  Even if I never see Ireland, if I see the faces of the people I love (and I have been fortunate to love a lot of people), I will be content. 

Death seems so dramatic when you aren’t faced with it, but I have found that, now I am given an endpoint to my life, I realize I will just continue doing those quotidian things that I have always done, as long as I can, and it really is okay.  I have no regrets, and I think of the poem Father Dick recited at our wedding long ago at Georgetown Lake:

“I have loved, and I have been loved, the sun shone sweetly on my brow.

  Dear life, I am at peace, dear life you owe me nothing now.”

 

(Okay, okay, we know that's an awkward wedding poem, and perhaps far more apt for a funeral, but you have to know Fr. Dick to appreciate it.  He gave the best wedding sermon!)