Merry Christmas!
Here we are at the end of another year, a time to gratefully
reflect on the blessings of the past year and a time to celebrate the birth of
our Savior. We are so incredibly
grateful for our Lord Jesus and the many ways God has enriched our lives. We
know that God has our lives in the palm of His hand, and He is leading us on
this crazy journey in life. We fully trust Him that the destination will be
worth the cost of the trip. I apologize for not reaching out to you last
year. I loved receiving everyone’s
cards, letters and gifts, but never responded.
Last November I wrote a Christmas letter/family update to you all, but never
got it printed and in the mail. I tried
again at New Year’s, Valentine’s and Easter…then gave up. Just as I never
update my blog with all the thoughts and posts floating around my head. I need to do better…people want to know how
we are and what we are doing. What does
a normal day look like for Rob? What do we need for prayers? I’ve been asked a
couple of times to start a caringbridge page…but…I’d better just regularly
update my blog. I cherish each and every one of you, so I’ll double up this
year to get you up to date. J If I can barely squish 1 year into 3-4 pages,
2 years will be 10, right? Ha ha. Here’s
my attempt at a short version while still catching up with everyone.
January – April 2018 ~ Life was going well. Rob was on a
medication for his involuntary movements, which helped him be able to control
his voluntary movements better. We did a
lot of snowmobiling – about once a week – knowing those days are limited. He
did great! It was amazing watching him shuffle through the parking lot, then
get on a sled and go tearing through the snow like nothing was wrong.
Well…anyone who knows how he used to ride would have noticed a change, but the
sled gave him so much freedom. Thanks again to everyone who rode with us and
helped us get out! Heidi was still
trying to recover from the effects of the h. pylori stomach infection she had
developed the previous year (2017). An endoscope in December 2017 showed the
infection itself was gone, but her stomach walls were still irritated and
causing issues. She was so used to feeling sick that she just went on through each
day…not eating much and feeling bad was just normal. Cody was busy with
basketball, travel ball and skiing. We
spent a lot of time taking Rob out for scenic drives to get him out of the
house in the evenings and he really enjoyed them. Between snowmobiling once or twice a week and
scenic drives, he was doing really well.
Then it all came crashing down.
April 2018. Rob’s
symptoms suddenly – overnight – went haywire and the next 3 months were
torture. He had insomnia and slept 6 hours in the first 8 days. His muscles seized up and he had a permanent
tension headache that no treatment (we tried everything) or pain pills could
touch. His depression and mood swings
were off the charts. He started having anxiety and panic attacks, OCD, and
suicidality. All of this (and more) out
of the blue. I was taking him to 3-4 Dr.
appointments each week while trying to do my job at MSU. Thank the good Lord I
work in a great department with a fantastic and understanding supervisor. When
I was at work, I was constantly on the phone with Rob. We were desperate to
find him some relief. It took 8 tries to
find the right medicine combination to help him sleep. It took nearly that long to find something for
the headaches. It was a horrible 3 months.
If I was home, I felt like I needed to be at work, but when I was at
work, I knew I needed to be home. And
poor Rob was just barely surviving. He lost 35 pounds and never wanted to leave
the house. He was in so much pain and anxiety and very angry and frustrated and
had temper tantrums and pouted and was extremely depressed and didn’t want to
live this way. The doctors were very concerned and often scheduled appointments
with us outside of their normal office hours.
I tried to be a buffer between the kids and his moods, but it was hard
on all of us. Thankfully, we had our friends, family and church family praying
and helping. My mom was at Rob’s
beckoned call to go try to massage his neck out with “the buffer.” Some elders came and prayed over him. And finally, at the end of June/first of July,
the Neurologist took him off his involuntary movement medication (hereby
referred to as the Devil’s Potion) and OVERNIGHT, again, everything improved! He definitely wasn’t 100% by any means, but
he was human again. Praise the Lord. But
now, I am ahead of myself and we are in the middle of the summer…let me catch
up with myself…
In the meantime, Heidi wrapped up her junior year and Cody
completed another golf season and graduated from 8th grade. Early summer found them both doing the things
they love, Heidi working with the Homie team for Gallatin Valley Serve and
heading off to Platte, SD for SERVE, while Cody was involved in basketball
camps and golfing with Opa. We were still seeking medical treatment for Heidi
but in June, almost exactly 1 year after contracting the stomach bug, she
finally started feeling better and was able to gain some of her weight back
(she was down to 90 pounds).
The end of June/first week of July we had a Hager family
gathering and we convinced Rob he could handle the camping trip. I had a few
camper repairs to make but we got it going and up to Grandpa’s house. Unfortunately,
we spent every day running to town to go to doctor appointments! The kids took turns sleeping in a tent, where
Cody got a giant spider bite (he still has a lump in that arm 2 yrs later), and
they both about froze to death. On July
3, we all went on a razor ride and a storm was blowing in and we all pretty
much frozen solid. We got back to the
house and were rotating through showers while I had to run razors back to town.
When I got back, everyone had taken good care of Rob, he was in good spirits,
they made sure he got a hot shower, and he was drinking lots of water – he told
me he was dehydrated. That night the
heat went out in the camper, because the winds blowing in a storm up on the
mountain had blown the pilot light out! In the morning I lit a burner, and
after around 30 minutes of it running we could almost stop seeing our
breath. It was 26 degrees the morning of
the 4th of July. That morning
after I got some breakfast in Rob, he informed me he had not been able to pee
since the morning before. He was in significant pain. So I loaded him in the
truck and back down the mountain we went to the ER, where he got a catheter. BUT,
this was the week we took him off the Devil’s Potion, and somehow, the guy who
had spent the last 3 months in miserable, deep, bottomless depression and
anxiety came out of this experience with a fairly positive mood. What?
So, back up the mountain we went for a bbq, but Rob was uncomfortable
(no kidding), so we got everything packed up and the guys helped hook up all
the trailers and point me down the mountain and off we came back home. Somewhere
in the midst of this, Cody went golfing with Opa and when I came down to pick
him up, I needed to take him to Urgent Care because his spider bite was huge
and scary looking.
Once home, Heidi immediately went to work with a bunch of
Gallatin Valley SERVE stuff and we were suddenly available for a summer
basketball tournament. We were going to
just send Cody with the team, but Rob was in such a fantastic mood and wanted
to watch Cody play, that I loaded him up and drove 5 hours to Miles City. It was over 100 degrees there and no AC in
the gym. Rob was walking around with a
leg bag hanging out of his shorts and…cheerful??? We walked in the gym and past
the high school team and several of the boys looked down at his leg bag and
never so much as flinched – just smiled, said hi and acted as though everything
is normal. I’m proud to know those boys…there wasn’t a single whisper or stare
or…anything.
Rob’s neurologist had told him he couldn’t lose any more
weight and to try to put some more back on.
So he ate Costco package of chocolate covered almonds in the car. That night he was covered in the worst hives
I’ve ever seen – but he said they didn’t itch – so I thought maybe it was heat
rash. I was hoping it wasn’t some kind of reaction or infection from his
catheter. I ran up to Walmart for allergy
meds and by morning he seemed better.
The next night was just as bad, but he was definitely itchy, so I
decided he must be having an allergic reaction. The only thing I could figure
was that he had eaten most of the container of chocolate covered almonds. So I
wouldn’t let him eat any more on the drive home.
In that entire trip, Rob never fussed once and was so kind
and caring and grateful for everyone’s help.
He didn’t complain about the heat or headaches from the bleachers or
sleeping in a different bed or the long car ride home, or anything! It was 180 degrees difference once we took
him off that medication. Oh, he was
still having all kinds of symptoms, but his sweet, kind, humble and generally
positive attitude and personality was back! It took over a week to get an
appointment in with the urologist, and we went there praying they would be able
to take the catheter out and sure enough, he did. Who would ever think that
they would need to pray for the ability to pee?
Normally Huntington’s patients have the opposite problem, but when your
central nervous system, which controls every single body function, is on the
fritz, you just NEVER know. And there
are days our prayers are specific and weird and weirdly specific…or
specifically weird! But…add another 2
prescription medications to the mix.
Rob was slowly improving and getting out every day for a
walk around the block. A friend took him
for a ride to Ennis but when he came home, he was covered in hives and
scratching terribly around his neck, so I asked him if he ate chocolate covered
almonds – no of course not…but after a few hours of me stressing about “what
could be wrong now?!” he admitted to eating trail mix on their trip. I smacked him and said, “STOP EATING
ALMONDS!!”
August 2018- We tried camping one more time, but it was a
bit of a fiasco. We did fish the
Yellowstone and watch a meteor shower, but we spent most of our time trying to
keep Rob cooled down and warding off headaches the best we could. I also had more adventures arguing with the
camper and jacking it up to make it as level as possible. It was hard to get Rob in and out and up and
down the steps, and difficult for him to sleep, and not enough room around the
table. The camper was fantastic when the
kids were little but it wasn’t working well. It was hard for me to admit our
days with the camper were done. I
repaired it and fixed it up for the winter, but finally decided it was in my
best interests to sell it. Oh, the
memories of hunting camps and family trips in that camper! In August, I also completed my second HURL
Elkhorn 15 miler. It’s such a beautiful
trail, I just couldn’t resist doing it again and I know Rob will never get to
experience that trail, so I have to go do it for him. The ups and downs of the
mountain ridges in the middle 8 miles are pretty miserable, but so beautiful. I
put in my praise music and some sermons and just have 5 hours of talking with
God. Plus, I need to stay in shape to take care of him! Heidi and I wanted to go on a girls
backpacking trip and planned to pack in a tent and overnight it at a mountain
lake. The weather turned NASTY – like –
37 degrees and pouring rain – but God provided a last minute forest service
cabin. It required quite a hike in
through foggy clouds, rain and grizzly terrain, and was so heavily wooded there
wasn’t a lot of visibility, but we got in and out okay. It was cold and wet and
we spent a lot of time chopping and cutting firewood, but the cabin (though
tiny and in need of a good cleaning and exterminator) was dry and had a wood
stove. I heard a bear once and something
raided the outhouse (we could hear the door bang in the middle of the night). I may have slept with my bear spray and
pistol fairly close by. The tremendous thunder, lightning and rain lasted all
night and I was soooo grateful for that cabin instead of a tent! It was a
misty, foggy, cold and wet hike out the next morning but we had a great
time. It was around this time that Rob developed
IBS (irritable bowels syndrome), which is common in Huntington’s patients, and
was dealing with all of those issues. Again…that AMAZING central nervous system
that controls our bodies without us having to think about it…well…when it’s on
the fritz, anything and everything can go.
Fall 2018 Rob’s cognitive abilities and short term memory were
noticeably declining as his dementia increased.
He is pretty good being home alone but his balance was also getting much
worse. Some awesome guys from church came to remodel our bathroom to get rid of
the bathtub so we have a shower unit he can just step right in. Bless these guys – they got done just in
time, because I had a terrible time getting him in and out of the kids tub/shower
while they worked on ours. Now we have
lots of safety handles and no more trouble stepping into the shower. He still does not like to shower alone – he
is scared he will fall or something – but it is so much easier to get him in
the shower.
Fall 2018-Spring 2019 – Another school year down for the
kids – senior and freshman! It was crazy having a senior. There is so much to do and so many decisions
to make! She was Rotary student of the month in September, and active in band
and pep band again. She learned to
crochet for her senior project, and at graduation was the salutatorian and gave
a speech. My little girl, who used to
turn her back to the audience at the VBS program so she didn’t have to see all
the people looking at her, stood up there and confidently gave a speech. She was also awarded the MCS Citizenship
Award.
Cody had a typical school year for him…he took the fall off
from cross country again since he wanted to work on his basketball, so we spent
a lot of time in the gym, until it started getting too hard for Rob for us to
be gone in the evenings. Cody spent a lot of time at the local basketball
courts instead. I also attempted to get him out hunting as much as we could
manage. It was stressful for me to try finding a decent place to go. We hunted
hard, but were never in the right place at the right time. We found a lot of
great elk habitat and elk sign, but the elk were down on the private land. He was able to shoot a nice buck up behind
grandpa’s house. After switching to
drums last Christmas, he was thrust into the lead drummer for band. That made basketball season pretty interesting
to run from playing basketball to playing drums. He finished the year out with
golf season, as usual.
Summer 2019 – Heidi spent the summer working full time and
converting her bedroom into a dorm styled room with a loft/desk and fresh paint. Cody was busy with Driver’s Ed, mowing lawns,
golfing and shooting hoops. He also re-roofed my shed with his friend Riley. We did get out on an ATV ride in the Crazies
with the Hagers and another in the Tobacco Roots – we even got Rob all the way in
the half mile hike to Sailor Lake. He did so good that day! (then slept for 2
days afterwards) I was ridiculously busy
at work and tried to get caught up on some stuff around the house.
Fall 2019 – Cody is having a great sophomore year so far. He
is busy drumming for pep band (all 7 or so kids) and is just now starting
basketball season. I am extremely grateful for our school and the kids in his
class. He is blessed with the best bunch
of friends. I joke about Cody being my latch-key kid, because some days I just
can’t get to Churchill but he is always at “someone’s” house. I’m sure I owe a month’s worth of dinner and
groceries to several families for always taking him in as one of their own.
Cody and I also did a lot of archery and rifle hunting this year. Rob was very
supportive of us getting out to try to put an elk or two in the freezer. We
hunted HARD but were always just behind them. I think their tracks were still
warm some days! We did spook a big sow and cub at close range and had a
suicidal squirrel jump out of a tree and splat right in front of us (he was
okay). Unfortunately, all the elk we saw were always on the wrong side of a
fence.
I had another bout of anxiety, panic attacks and depression, but I seem to be getting it under control.
Rob’s symptoms continue to be a roller coaster. He is easily (understandably) frustrated with
daily life. He chokes every time he eats,
and his nose has been running for 3 years.
It can take him an hour to eat a bowl of cereal, so every morning I make
him smoothies with protein and probiotics. It’s getting harder to understand
him when he talks – partially because he slurs his words and mumbles, but also
because he doesn’t always make sense any more. He loves to tell stories from
“back in the day” but it is very difficult to keep him focused on the present
and maintain a conversation. It’s a
delicate balance to fight his depression, but the doctors are doing a pretty
good job at changing or updating his prescriptions. He struggles daily with his IBS problems,
which often keep him at home. His
involuntary movements are MUCH worse, but so far he refuses to go back on any
of the meds they make for that – the majority of them are all dopamine blockers
and come with side effects of depression and suicidality. Why give someone a medication that worsens
the symptoms they already have from their disease?! Forget it! We thank God we live in a school
and church community who love him for who he is and don’t care about his
involuntary motions. However, by controlling his involuntary movements, it might
make it easier for him to complete some regular life tasks. Hard to know which
is better or worse.
His balance is worse, and he weaves back and forth down the
sidewalk, but he is still walking on his own, unaided. Two years ago the doctors told him he needed
to use a walking aid, but he’s still going it on his own. His headaches are a little worse again, but
he is only taking 2 pain pills in the late afternoon and at bedtime, so we are
managing them. His temperature regulation is off, so right now he is always
cold. I can be outside in shorts and a
t-shirt and he is in 3 layers plus his winter parka and stocking hat and still
cold. His dementia, cognition and reasoning is also worse. There have been
numerous times he is angry at me for things that did not happen, but I don’t
take that personally. If I wake up early and get ready, he is mad that I “never
came to bed last night” or I get up, shut the bathroom door to pee, come out
and he thinks I’ve been gone for hours. Some
days he is furious at me because I didn’t take a nap – at work - ??? I remember
he isn’t really mad at me, just confused.
Even though he is cold all the time, he has TERRIBLE night sweats, which
make him even colder. His feet are always cold, so I rotate him through
moisture wicking smart wool socks every afternoon. His short term memory and
sense of time are off. He doesn’t have a filter or any impulse control so he
blurts out some unkind things or gets angry or interrupts a conversation to
demand a snack. We try hard to say,
“it’s the Huntington’s, it’s not Rob” but there are days when it is hard to
separate our personal feelings from what his disease blurts out. We all miss our Rob…we don’t see him very
often…but sometimes he shows up. He has a hard time having a real conversation but
I get at least 10 thank-yous for each morning smoothie I make, so at least I
know he is grateful and appreciative.
The poor guy is doing the best he can…I need to try harder. God gives us strength every day…
He is still home alone during the day and has his little
routines. I get him up at 7:45, shower
him, then go out and make him a smoothie before I rush off to work. It takes a
little longer each day to get him up and ready, so he gets breakfast about 9:00
now as I head out the door. At 10 he has
snack time of a yogurt and protein shake.
He listens to Dr. Dobson and either Truth for Life with Alistair Begg or
Know the Truth with Philip DeCourcy (I’m not sure which one). At 11, he “works
out” which is some of his physical therapy exercises to keep his balance and
leg strength up. At noon its lunchtime already, and that takes him at least an
hour. By then, he is completely worn out
and takes a good nap. He is usually
awake by 2:30 or 3. The afternoon
stretches out pretty long for him if we don’t try to be home by 4, but we
aren’t able to do that most days. I have been super busy at work as well, so it
is harder for me to take off and work from home. My boss has been awesome about my schedule
and allowing me to work from home as needed, but so much of my job I need to
physically be in my office and it is busy and sometimes stressful – especially
if I know Rob is having a bad afternoon or is hungry and looking for dinner and
I’m in the midst of school stuff or shuttling kids. Thankfully some ladies from
church made us a bunch of freezer meals to help on my busy days and now Heidi
is around to help on days she is feeling up to it.
I am ready for snowmobile season, but not sure what that
will bring. Last year I only made it out
3 times and one time I broke down and had to sit in the parking lot until
everyone else was done. Rob has been
very supportive and even comes out to help me back up next to the house or hook
up to the trailer. I’m happy to see him
out there waving me in multiple directions at one time, because he is out there
trying to be “the man” and be helpful and caring. He wants to go riding this year, but that’s
going to be a stretch. He can’t wear a helmet and struggles with basic motor
skills so not sure how he will control his throttle or steering. I’ll try it
though, he may surprise me and do great.
It’s definitely an adventure, that’s for sure. But through
it all we have been SO blessed by the Lord through those around us. I could not begin to list the kindnesses and
grace and helpfulness and mercy we have been given by so many people in our
church and school family. Gift cards arrive. Bills disappear. Hamburger is delivered.
Bathrooms are remodeled. Hugs are given
and tears are shared. Meals arrive just
when I need them the most. Prayers are repeated and repeated and repeated – and
they give us strength and endurance and peace and love and even joy. We continue to pray that somehow God can be
glorified through this experience. That
is easy to say, but hard to do. People
say we are strong – but we are weak. Any good you see in us is Jesus covering
our weaknesses and shortcomings. There
are down days and ugly moments and wanting to escape. But…we do know, that God works all things
together for the good of those who love him.
And we love him. And we know he
is good. And we know he has a plan and
loves us and wants the best for us, his children. We know he does not make mistakes, and that
we are dealing with the consequences of a fallen world. I don’t ask why – that is not something we
struggle with. The why is sin and disease…it’s as simple as that. But…sometimes the difficulty lies in the
stress of getting everything done in the right time frame and trying to be the
kind of caregiver Rob deserves, and Rob trying to persevere through a daily
existence of ridiculous symptoms.
But, thanks to the Lord and all of you, we are “pickin them
up and puttin them down” as Rob used to say when we would trudge out of the
mountains after some crazy adventure.
One step at a time. Knowing that in the long run, we’ll reach a glorious
destination…and trying not to fuss and complain along the journey. Oh, I fuss
and I complain, but every once in a while I remember to look up and enjoy the
view. I see life as a long journey, down
a difficult trail, with highs and lows and beautiful vistas, and green
pastures, and still waters, and dark, deathly, terrifying valleys, with easy
stretches and rocky scree fields to cross, with smooth paths and rough
stretches of switchbacks, in heat and cold and trees and desolate deserts…and I
trust the good Shepherd who leads us down the trail. He knows the destination
of this journey, so we do our very best to willingly follow His lead. Oh, sure, I complain a plenty when I stub my
toe on a rock, or I get tired of walking in the valley of the shadow…but then
we can just look up! There we see the Rock who is greater than all, who is
lovingly and kindly leading us and we remember the only important truths that
matter. God is good. God loves us – SOOOO much more than any one of us will
ever understand. He has a good and perfect plan for us. He works ALL things together for the good of
those who love him. We love Him…so He
can use all of this for His good. I
don’t need to know why. Why is stressful. Why is painful. Why is too hard. I prefer to think that why is also easy – why
is this: sin entered the world long ago and now we are still all suffering the
consequences of that sin…but HARK!! Halelluia!
CHRIST has been born! He was
born, took the sin of the world upon his shoulders, and paid the price of my
(our) death in our place, then conquered that death when He rose again! Hooray!
And He is coming again one day soon to rescue this world from its
present darkness! Then there will be no more sorrow, no more pain, only love
and peace and joy! To God be the Glory.
And may we somehow, someway, glorify Him with our story.
It’s a journey, for sure, but it’s a journey the Lord put
before us, and THAT is the only important thing I need to know. He’s got us.
He goes before us. He’s taking us
somewhere amazing. I might sit on a rock and complain about the trail ahead of
me…but…then I see the good Shepherd, and I stand up and I just keep pickin ‘em
up and puttin ‘em down. To HIM be all
the glory!
Thank you, so very, very much, for being one of our loved
ones walking along on this journey with us.
Many- so many – of you have shared our burden and helped carry us over
the rocky stretches when we stumble and fall and struggle to continue. Thank you so very much.
We love you all more than you could ever know. May you be
blessed this Christmas and throughout the coming year. We wish you a very, VERY, Merry Christmas!
With all of our love!
No comments:
Post a Comment