It's funny how priorities can change.  Or maybe I really mean that my perspective has changed.  Certainly my idea of what really matters has become more clear over the last few months.  

 I've had a stressful work week so far and Dad has had a tough couple of days.  And after an important, but emotional talk with Mom and Dad tonight, I went to my car to find that I had apparently annoyed somebody by parking my car in front of their house, and they parked literally right up against my bumper.  Apparently to prove the point that they own the street in front of their house?  I fought back my initial urge to go pound on their front door and take out my frustrations.  And then I felt envious that somebody's life is so uneventful that a simple thing like parking is all they have to worry about.  Good for them, I guess.  They probably don't even know how lucky they are.  I guess we are all learning the hard way not to sweat the small stuff.  And until the last few months it really was small stuff. 

It's been a tough couple of days for Dad,  His arms aren't working very well, but in true Bill fashion, he still is finding ways to make the best of it.  It might mean that he has to turn his whole body, or use two hands to set the cracker that mom is practically force feeding him down, but he gets it done.  He always has had a knack for making things work, one way or another, and that continues.  His weight is holding, probably due to Mom's coaching. His breathing has been alot harder, and the nights seem to be the worst this week.  Coughing just isn't possible with the weakened chest muscles.  He is using his bipap, and it may help some. And still, he doesn't complain. 

In the middle of this horrible disease that Dad is dealing with, we have lots to be grateful for. We are close, we love eachother, and we are trying to talk and spend time.  We're still having fun together and having some good family times.  We're still learning from Dad.  Learning patience and faith and trust and so many things.   And that's not small stuff. 

Thank you everybody for your prayers, and please keep them coming.  And stop in.  Dad loves the company. 
Lynette

Finger Pointing

Tonight we saw just how things run through a family.  We laughed so hard at Ben (16 months) pointing his finger at Dad and really chewing him out for something.  Well, apparently I point my finger a lot and I know Dad does ... he said so did his mom and her mom.  Funny!

Tough night breathing last night, which is very scary for him.  It's scary for all of us, but he is the one who has to really live this disease.  It takes a tremendous amount of courage to face a terminal illness.  I always knew Dad was brave, but he is SO brave. 

Well, Grandma and Grandpa the faithful basketball followers were out for Nathan's game by 8 a.m. and then made it to Beresford for Madysen's games at noon and two. It was the first time they have had their new van out on the highway. (Note to Lynette, don't park Dad in his wheelchair with his back to the players warming up. Poor guy didn't know how close he came to a head bonking, and only my lightening quick reflexes prevented a major headache.) The kids sure love having them there, and have come to count on it. The kids expect Grandpa to keep track of their scoring. It's something that Dad really enjoys, and I hope that he can continue to come . It's definitely tiring for him. If it gets to be too much , we will record games and make sure that he can watch. The fatigue and breathing are the enemies these days, as well as some trouble with swallowing. Dad's voice is quieter than it used to be, and I found myself wishing today that he would yell at the ref, like the old days.

Mom said that they tried a new church service tonight. Mornings can be a little tough, and the Saturday evening services may be a good fit. 

Who Needs Oxygen Anyway?

So breathing is pretty tough with any kind of physical activity.  Does better when at rest.  It's hard to understand because when they check his O2 it's usually ok.  I guess when the muscles in the chest get compromised it must do strange things.
 
I wonder how many times per day I quote my dad?  It gets to the point that my co-workers even know him because I am always spreading his wisdom and wisecracks!!

Please just lift my dad up to God as we pray for peace and understanding.  I read the coolest quote yesterday, "Thank you for the beautiful life and forgive me when I don't appreciate it enough."  How true!

Fatigue is probably the biggest problem right now.  I don't think any of us expected Dad to be SO tired all the time.  Breathing is pretty tough, but voice is stronger today.  It's such a day-to-day disease.  It can take months to lose a function, or they can wake up one day and a function is just gone.  As far as swallowing, it's the things you'd expect to be hard such as beef, but then there are the stranger things such as oranges, waffles and pancakes that he can't swallow anymore.  Dad has a fat guy's appetite and a thin guy's metabolism.  I hate that ALS takes away the pleasure of food.  He really likes company - I think the days get pretty long.  He is also a big fan of the more crispy-type sugar cookies and so far, he can eat those ;)

Lynette and I were talking about why we named our blog Thistles & Twine.  It's hard to put into words, but I will try.  I grew up with horses...usually LOTS of them...and Dad just walked out into the pasture with a twine in his back pocket to catch whichever one he wanted ... though most of them would just follow him anyway like giant puppies.  Dad just always had a twine that he was using for something.  The relationship between Dad and twine was kind of like MacGyver and duct tape.  Thistles - we used to get Canadian Thistles in our pasture that drove him nuts and he was always on a mission to get rid of them.  I don't know - the name just makes sense.  I guess life is kind of like that and there are so many thistles...like when there are so many nasty horrible people out there - murderers, child abusers and the like - why OUR dad?  I just don't understand.  My dad says, "We know who is in charge."  Amen.

Dad has a bit of a cold and Mom said his arms are bad this weekend.  If you want to know more about ALS, the site www.alsa.org has great information.

Here goes....

It’s Lynette here.   Thanks to Erin for setting this up.  I didn’t have a clue where to even start.  Erin is always good at these types of things.  J 

When I asked Dad if it was ok with him to start this site, he said ok, but he doesn’t want to be depicted as weak or whiny.  I understand and respect that.  I also cannot imagine how we could, with any accuracy, show him that way.   Because he isn’t.

 When I think of Dad, I think of a man’s man, a horseman, a gentleman.   He watches out for the girls (and boys) in his life, whether it’s getting a door for us, double checking that a saddle is secure, checking to make sure a grandkid’s feet are warm enough/ears covered, carefully watching out for his teenage granddaughter on a Vegas trip, or the countless trips out to the end of the snow filled driveway to start and warm up Mom’s car in the winter.  He always knows where Mom is at and watches out for her.   He’s a people person, a salesman, and a talker.  His word means something to him, it always has.  Always will.  He’s sometimes feisty, and always caring and fiercely protective of the people he loves.  They just don’t make ‘em any better.

I am so proud of him.  He has taken this horrible sucker punch called ALS ( “Lou Gehrig’s” ) with incredible courage and class.  Life has changed so much since July.  But I have not ever seen him whiny or weak or feeble.   I just see him day by day trying to make the best out of a tough situation.  I haven’t even seen him angry, and he has every right to be angry.   Lord knows I’m pretty mad right now.  

Thank you to all who have shown support.  Your love and friendship mean so much.   

And Mom…love you too.  I am pretty darn proud of you right now too. 

ALS sucks.  Big time.

"There is a sacredness in tears.  They are not the mark of weakness, but of power.  They speak more eloquently than 10,000 tongues.  They are messengers of overwhelming grief and unspeakable love."  Washington Irving

Welcome to Our Blog!

We are very new at this blogging thing, but we are very new at a lot of what we're dealing with this days. It is important to our dad that no one feels sorry for him, so that is not what we are seeking. Instead, we hope this blog allows us an outlet and you, our family and friends, an easy place to check in on us. We have been an incredibly blessed family. Upon Dad's ALS diagnosis last summer, I think Mom said it best, "How lucky are we that we don't want anything to change?" So true. But change it has, and we are learning new things everyday about ourselves and about each other. Anyone who knows our family well knows that we tease & make fun of each other. A lot. We are holding on to that. Laughing when we can, lots of tears, time to talk and making the most of every single minute. If you're wondering if you should stop by or call, you should! Oh - and I suppose an update on the monster we call ALS is in order - well, it's a monster for sure. Dad has dropped 30+ pounds since July and is losing a lot of the use of his arms. Swallowing is getting tougher, voice is hoarse, and he now has a biPAP and cough assist machine. He hasn't whined about anything - not even once. He's a tough dude, no doubt about it. Proud of you Dad!