Riding!
January 20, 2020
Monday
was Martin Luther King Jr Day, so I had the day off from work. Rob has been wanting to go riding for several
months, and I have worked hard getting the sleds up and running. He has not ridden a sled in 2 years, so the
sled has been sitting that entire time.
I’m more than a little scared to take him riding. I honestly don’t think we’ll make it up to
the first corner before we have to turn around and reload his sled. His motor skills, involuntary movements and
balance are so bad, I just can’t imagine how he can ride a sled. There is so much he cannot do – or will not
do.
He had a doctor’s appointment on
Thursday (16th), mid-morning.
I have been extremely busy at work, so I spent several days convincing
him to allow Heidi to drive him to the doctor’s office and I would just meet them
there. This would allow me to go to work
in the morning, meet them at the office, then get back to work before leaving
for a basketball game. It sounded like
he was willing to let Heidi drive him. But
then, on Wednesday evening, he threw a HUGE temper tantrum about riding in
Heidi’s car. He absolutely refused to do
it. “I hate her car!” “I’m not going to
go if you don’t drive me” Then he started in with all of the excuses for why he
can’t ride in her car (the majority of which are just that – excuses – and are
not even true)…“it’s too hard for me to get in and out of her car” (it isn’t) “I
hate the seats” “the dash is stupid” “it’s been totaled by hail” “I hate that
car” “I know how bad it is, cuz I used to drive it!” “the dash is really dumb” “the
gauges are hard to read” “I hate that car and I won’t ride in it” etc.,
etc. So to appease him, I decide to
drive the Buick to work, let Heidi drive my car to bring him in to the doctor,
and swap cars with her there. Nope. He refuses to go to the doctor unless
I drive him myself. Meeting me there isn’t
good enough. So…it isn’t really even
about the car after all. THREE hours of
fussing and arguing about the car, and it isn’t even the car?! I ask him if he
wants this person or that person to drive him and meet me there….nope. No go. It doesn’t matter who I suggest to drive him,
he refuses to go unless I take him. So, NOW I have to take the entire day off
of work. The whole day. Just to take him to a 15 minute med check
with the doc so he can get the prescription for his pain meds renewed. I’m can’t help but think, “and this guy wants
me to take him snowmobiling?!” It’s
going to be a disaster. I just know it.
Rob used to be such a FANTASTIC
snowmobiler. Back in the day, when guys
would say, “put Robby on my sled!” I
have been binge-watching all of Chris Burandt’s daily facebook videos, because
they remind me so much of Robby and the crazy climbing, tree lines, boondocking,
one legged, hang off the side of the mountain riding, cornice jumping, skiout
pulling, crazy mountain riding he used to do.
I loved (attempting) to follow him around a mountain! He was crazy.
I can still see some of his crazy lines up through the trees or insanely
long jumps (where he may or may not have broken his tooth through his helmet
one time), or just whipping his sled around in the powder. And I want him to remember those days and that
riding.
I’m afraid that if I take him
riding, he will fail. I’m afraid he will
be very disappointed. I’m afraid he will
only remember his inability to ride
and forget all the years of his amazing ability to ride before he was robbed by
Huntington’s Disease. I want him to have
the joy and thrill of being on a sled again…but…I don’t want him to feel
deprived, jealous, disappointed, crushed, or depressed by all that he has lost.
Will he enjoy it? Will he have fun? Will his IBS act up and how
will I deal with a digestive emergency on the mountain in the snow with snow
pants and no balance? What if he gets hurt?
What if he can’t run the throttle right and runs into a tree? How bad will his tension headache be with a
helmet on? I transferred most of his
backpack into other packs or my pack so it won’t be pulling on his shoulders
and neck, but the helmet might give him a headache. What if his involuntary movements affect his
throttle control and steering ability? What
if he has a hard time sitting on a sled and falls off? Will he be able to walk (shuffle) through the
snow? How can I help him pee in the
woods? His motor skills – especially with
his hands – are not good – how will he control the throttle when he can’t hang
onto a water bottle without dropping it every 10 minutes or so? He is always freezing cold. He wears 2 or 3 layers of fleece and a
carhart vest in our house. How will I be
able to keep him warm? How can I keep
him fed? I don’t want him to go out
riding and fail. What will that do to
his ego? Will that be the only riding he can remember? How disappointed will he
be? Will he remember the old days of
riding, or only remember the new days?
And yet, at the same time, I
desperately want to get him out. He has
been SO CRABBY for the past 2 months.
Everything is negative. He has
nothing to look forward to and all he can do it complain or criticize or be
frustrated. I want to give him something
to look forward to, no matter how scary it might be for me. Once I got the sleds running right before
Christmas, every couple of days he will walk out in the garage (major feat) and
actually start up his sled by himself (amazing feat) and sit out there and run
it. He is so excited, I HAVE to take
him. It gives him something to look
forward to, to live for, and to work towards.
I feel super bad asking anyone to
ride with us, but I cannot take Rob alone!
That WOULD require Search and Rescue by the end of the day, I’m sure. I feel guilty for even asking people to ride
with us, because I know it isn’t really a ride and more of a babysitting
mission, but Kelly and Mike both immediately respond with a “yes.” They know what they are in for and willingly
say yes because they want to try to give Rob a good day. I cannot say thank you enough for everyone who
is so willing to help Rob have some good in his long hard days. And I can’t say
thank you enough for everyone who is helping me attempt to give him some of
those days and taking some of the stress off of me.
So, we’re going. I get the truck
and trailer hooked up. I have new plugs and fluids in his sled. I’ve gotten 3 sleds up and running. Cody helps me load sleds Sunday
afternoon. Rob comes out to “help” also. I am amazed.
He refuses to get off the couch and help with anything. I know he struggles and there are a lot of
things he cannot do, but there are plenty of things he CAN do, but he won’t. So, he must be really excited to go
riding, because he is outside trying to help.
Everything is loaded and ready to go for the morning. I am a ball of nerves and anxiety, but
watching Rob’s excitement is worth every effort.
Monday morning arrived and I got up
early to get everything ready…pack lunches and load the truck and make sure Rob
has a good breakfast. I say good bye to
Cody as he heads off to Bridger for the day.
Rob is ready early. We go top off sled and head up the mountain. We get there early. I start unloading things, and Rob surprises
me by helping with some of the things I did not think he would be able to
do. Kelly and Mike arrive and in short
time, we are headed up the trail. Rob
does much better than I expected, but it is bitter sweet, because I can see how
hard it is for him just to ride down the trail.
We get up a little way and Kelly stops and asks Rob if he needs a
rest. Thank you, Kelly! I would have stupidly waited for him to tell
me he needed a break. Kelly’s on top of
it before I think of it. Rob is happy
for a break. After a long break, we get a few more miles up the trail. Another break. Kelly and Mike are so patient! We get to the meadows where Rob and I used to
bring the kids to play when they were little.
After another good long break, I see if Rob wants to ride around a
little. I chase him around a little bit
(keeping an eye on him), then deposit him back with Mike and Kelly. Those guys spent the majority of their day
patiently sitting and chatting while waiting for Rob to play in the meadow a
little, then take a long break with them, then play a little, then take another
long break, then play a little. Rob did
so much better than I expected. Oh, he
wasn’t doing anything crazy, that’s for sure…but he was able to putz around a
meadow without falling off or getting hurt.
When he needed to pee, I helped him walk over to a tree. When he needed food, I fed him. When we stopped, I made sure he got some hot
water to drink. Kelly and Mike were
constantly checking on him and chatting with him.
We ride from meadow to meadow,
letting him play a little here and there in between breaks. He did manage to hit some big branches on an
old dead tree, tip his sled over and get pitched off the side. But he scrambled and scrambled (like a turtle
on his back) to get his feet back under him because he wanted to hit the kill
switch on his sled before it flooded. He
was okay. He wasn’t hurt. His sled was fine. We gave him another nice long break and rode
through 1 or 2 more meadows before hitting the trail back home. I didn’t want to tax him too much, but I didn’t
want to cut his day too short if this was the last time he was ever going to
ride a sled. Kelly did a great job
continually checking in with Robby as well…and especially making sure we left
before we pushed Robby too far. I
probably would have pushed him the other way – trying to get 20 more minutes of
riding in before heading out – but Kelly was the responsible one, making sure
we got him to the truck before he was too tired.
So, down the trail we went…and
headed home. He had a GREAT day. I can’t thank the guys enough. Robby is very unaware of his symptoms at
times, and was slightly unaware of the level of his riding. To talk to him, you would think we had been
on a big-boy ride instead of a putz up the trail ride. He was so energized by the day, but so
exhausted. He did SO much better than I
expected…but it was definitely a lot for him.
I got him home and into the house and he immediately fell asleep for 3 ½
hours, woke up, ate dinner and I immediately tucked him right into bed.
The end result – he was super
crabby for the next few days – but he was exhausted. It took a good 3-4 days of naps for him to
get rested back up. I have a lot of
mixed emotions after the ride. Happiness
for him. Sadness to see how much he has
lost. Loneliness for “my Rob”. Gratefulness for good friends and the ability
to get Rob out. Thankful for a good
day. Missing my best friend and hero. A selfish longing for our old lifestyle and
riding. Extremely pleased he did not
fail completely and he had a great time. Too many thoughts and feelings to
process…so I stick with gratitude and gratefulness. It was a great day.
He's done...
No comments:
Post a Comment