BADLANDS NATIONAL PARK

We have arrived! We took 2 days to get to the Badlands National Park, stopping in a campground in Adrian, Minnesota on Saturday night and arriving in the Badlands mid afternoon on Sunday. We quickly set up camp, everyone scurrying to fill their role. Childhood memories immediately rushed to the forefront as I recalled many summer nights under the stars. I could hear the sound of crunching gravel under my feet and the crickets in the woods. Flashlights flickered across the pitch black sky. The campfire crackled and my fingers were sticky from s’mores. As long as I live, those will be some of my fondest memories. And now I hope my children will say the same.

After reviewing hiking plans for Monday, we enjoyed a nice sit down family dinner cooked in the RV (pre-made by dear friends for our trip). Then, we strapped on our headlamps, tightened our hiking boots, zipped up our warm jackets and headed out into the crisp, cool prairie for an evening program to learn all about the Badlands. Afterwards, we spent time looking through a telescope at the moon and marveling at its intricate detail. This is truly a place covered in God’s fingerprints. Peace and tranquility settled upon my soul, and for a small moment, everything was right. It’s good to be here. It’s good to be together.

Yesterday, Monday, we spent a full day hiking and exploring together. My eyes couldn’t quite comprehend the beauty of what they saw. Massive buttes, deep gorges, layered rock formations, steep canyons and towering spires. Strenuous hiking trials, including the infamous Notch Trail, were checked off our list and we reveled in a day of adventure. Evan was fearless yesterday and I allowed him to push the limits that I set upon him. Then, I quickly recalled the elite climber that he is and his steps are always well measured and calculated. He’s meticulous and knows his capabilities. Cole followed suit and conquered some amazing climbs himself. I love watching them explore and I will never forget how the grandeur of the Badlands made them both gasp in wonder as they summited climb after climb. I’d like to think that although they felt small and insignificant next to the towering buttes and steep drop offs, they built confidence in the great outdoors. It was truly a magnificent day. (Lots of pictures…blog continues below)

As evening approached, the sun began to rest behind the buttes and the brisk air was invigorating and awakened my soul. We gathered around the campfire and made s’mores while Jeff’s IV dripped. As the fire began to roar, sparks leapt off the wood and made a cracking sound. Oh how I love that sound. It’s calming to my restless and anxious heart. We replayed the day that we spent in nature with tales of adventures and misadventures. I feel so lucky to be surrounded by the people I love most, in a place that words cannot even come close to describing. It was a great day and I am grateful!

Jacks are up, van is tow ready and we are off to Mount Rushmore followed by Custer State Park.

HOMANS GO WEST!

homans_go_west.jpgIt’s been entirely too long since I have blogged.  3 months!  Summer hit, boys went to a week overnight camp for kids impacted by ALS, we moved into a new home, celebrated Jeff’s 40th birthday, went to the lake, went to rock climbing Nationals in Atlanta (Evan placed 9th in the nation in speed climbing), vacationed at the beach, celebrated my birthday, rock climbed in Red River Gorge, KY and decided 4 weeks ago that we needed to make a trip out west happen (details below)!  So, we withdrew Evan and Cole from school and here we are less than 1 week from departure and we are still planning and haven’t packed a thing.  When you’re living with ALS, stress is the norm unfortunately so bring it on.  We are capable of anything!

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ALS is a progressive disease so over the past 3 months, Jeff’s physical strength has continued to decline substantially.  He is no longer walking and he is quickly losing the ability to stand…which means full transfer is on the horizon.  However, just this week at Ohio State’s Clinical Trial, Jeff’s breathing test showed an increase by 1%.  I never thought I’d celebrate a 1% increase in anything.  “We’re running a 1% sale on this $200 North Face jacket.”  SCORE!  I saved $2!!!!!!  Nope.  Doesn’t excite me.  BUT, we’re talking about breathing…the very numbers that determine life.  So we will celebrate the small things, because the small things absolutely add up.

It’s been 15 months since the confirmation of a life changing diagnosis rocked our world.  We got to work immediately.  Financial planning, estate planning, attorneys, sold our home, sold Jeff’s car, built a wheelchair accessible home, eliminated the noise and unnecessary in life, medical planning, panic, stress and anxiety over the cost to live with ALS despite amazing insurance, fundraising, advocating, researching, clinical trials, new drugs, care taking, machines and equipment filling our home, working with an advocate who has devoted tremendous time and energy to help us, emotions of young children processing a terminal disease and much much more.  Through ALL of this, Jeff Homan remains the positive, faithful, gentle, hilarious, rock solid man I married 16 years ago.

We are finally at a place where we need to slow down, rest and have the time of our lives!  As soon as Jeff was diagnosed, 2 co-workers asked him “if you could go anywhere with your family, where would it be?” He said “a trip out west.” They handed him an envelope and said “now go do it!” While it would have been ideal to go 1 yr ago (Jeff was still strong and walking) we were emotionally drowning and a 6 week trip was WAY out of reach.

A LOT of things had to fall in place perfectly for this trip to happen.  It was just 4 weeks ago (on a rainy beach vacation day) that we finally said “ok, let’s actually do this!  And we got to work.

Jeff’s brother (who moved to IN from FL 1 yr ago to help with his care) is coming with us!  His employer said “go!” Jeff’s work is moving mountains to make this happen (worthy of a separate blog post soon).  We are getting a double shipment of IV meds delivered for the trip (4 of the 6 weeks Jeff will be on a daily IV drip).  I learned how to access Jeff’s port so we don’t need a nurse or a hospital stop!  A brand new RV was loaned to us by Jeff’s cousin.  Yes, I’m driving it!  You see, my mama once told me “you can do anything!” and I believed her!  Evan and Cole’s school is supportive of them missing the first 8 weeks of school, Evan and Cole’s climbing team is cheering them on and my work (staff and clients) has gone above and beyond.  There so many others behind the scenes loving on us and cheering us on.  We couldn’t do it without you!

So…here we go, on a 6 week trip of a lifetime!  We are going to do hard things.  Hard things as a family and hard things to overcome individually…for Jeff, Doug, me, Evan and Cole.  It will take effort from everyone.  Team work.  Collaboration.  Celebrating small victories and even the BIG ones…from hiking a 14er, 12+ hour trek up Half Dome, rock climbing and rafting we will face physical limits and perhaps emotional limits.  It’s going to be epic!  Follow the details starting this Saturday, Aug. 18th.  You can find daily trip updates on Instagram @homans.liveoutloud and I will try and blog several times on our trek as well.  Thank YOU for being a big part of making this happen!

All our love,

Tara and Jeff

Fitness & Grief

Today had a rough start.  A restless nights sleep followed by a 5 am start to our day.  Jeff is no longer walking without full support.  This is a new development over the past month and he requires full-time use of his wheelchair.  Today was his first day in the office with his power wheelchair.  Can you recall the first day of a new job or even school?  The first day is always hard.  Fear.  Nerves.  Unwanted attention.  All of this coupled with the acknowledgement that something serious is taking place.  The words from Jeff’s neurologist still ring loud and clear in my mind “whatever is going on, you need to prepare yourself for something serious.”

So, on our first day out with the power wheelchair, we decided to make a grand entrance.  I pulled into the freshly painted “VAN ACCESSIBLE” handicapped parking space at Jeff’s office.  I tossed the keys and cell phone in the seat and shut the drivers side door.  I went to open the side door to release the anchors from Jeff’s wheelchair.  LOCKED.  I checked the driver side door.  LOCKED.  Frantically I checked the passenger door, trunk and side door.  LOCKED.  LOCKED.  LOCKED.  Jeff inside.  Me outside.  Jeff anchored down in his wheelchair and me standing helpless on the other side of the glass peering in.  Do I laugh or do I cry?!  Panic.  Fear.  Now what?!?!?!

Jeff was able to unbuckle the shoulder strap and shimmy his way to the front of the vehicle to unlock the car, which in turn set off the alarm that I was unable to disarm for what seemed like an eternity.  Perfect.  More fear.  More nerves.  More unwanted attention.  Roll out the red carpet (ramp) and sound the alarms:  The Homan’s have arrived!!!!!!

Deep breath.  We survived.  As I sat in the parking lot, fighting back tears while I watched Jeff motor into the building, I glanced down at my watch.  It displayed my resting heart rate.  Your resting heart rate is a measure of how many times your heart beats per minute while at rest, and is a good measure of how fit you are.  60-100 is normal.  A lower heart rate often suggests greater physical fitness. Mine is 47 beats per minute.  So despite how I feel…despite the hurt in my chest, the broken and bruised and shattered heart that leaves me feeling weak and inadequate, my heart rate monitor says otherwise.  It says I’m strong, healthy, capable and fit.

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There is tremendous benefit when it comes to combining fitness with grief.  There is something transformative with sprinting, climbing, lifting weights and flat out emptying your tank.  I can feel the pain wash over me and the endorphins energize me, uplift me and encourage my soul.   A good heart pumping, sweat session is a great place to release the daily emotions that come with grief, stress, anxiety and fear.  Intense exercise has emotional benefits that reach far beyond physical fitness.  I can sweat out toxins and process the hurt and pain.

You see, grief doesn’t just visit you on a memorable day or holiday.  It moves in, unpacks, resides and puts down roots…and worse, it never leaves.  As long as you have breath, it exists.  Without warning grief makes an unwelcome appearance and it devastates the landscape of your heart, leaving you bruised and breathless and weary and then you have to rebuild it again…and again…and again.

You are forced to face your inability to do ANYTHING but feel it all and completely fall apart.  There is nothing I can do to change this.  This is our road.  Its long and hard.  This is not a momentary detour, it’s permanent.  There is no way around it.  Grief has interrupted our plans, changed relationships and rewritten the script for us.

Exercising (and even instructing classes) requires intense focus while giving me a sense of control.  My life feels wildly out of control right now and I can walk into the studio for an hour and take back the reins.  Exercise increases blood flow to your brain, allowing it to function better.  It promotes feelings of calm and well-being.  And…my absolute favorite… it also releases endorphins, which are powerful chemicals in your brain that energize your spirits and make you feel good.  Endorphins = the FEEL GOOD drug.  I need it.  I crave it.  Oh, I still grieve.  Tremendously.  I still want to launch that cereal bowl against the wall, but now I can throw a punch in class or bicep curl a 20 pound weight or feel my lungs gasping for air and my legs burning after 60 seconds of all out burpees!  Yes, I still grieve tremendously.  I’m just stronger both physically and emotionally.  My endurance, perseverance and grit are well developed.   I can face life better, function well despite terrible odds, and LIVE.  Growth is hard.  It hurts.  Building muscle is hard.  It hurts.  Giving your all is hard.  It hurts.  Pushing your absolute limits is hard.  It hurts.  And life is hard.  It hurts.  But…You’ll come out better and stronger.

LIVE.  For “TODAY, is the best day.”

Tara

LIVING ALS OUT LOUD

May is ALS Awareness Month.  It’s also exactly 1 year after we received a 2nd opinion confirmation from the Mayo Clinic regarding Jeff’s diagnosis.  Life has changed quite drastically over the past year and we have literally gone 100 mph making plans and preparing for what lies ahead of us.

Jeff recently said to me “TODAY” is the best day we’re going to have.”  Let that sink in.  Powerful.  Today.  Today is the best day.  So as we rise each morning, exhausted from the restless night before, and before our feet even hit the floor, we will engrave this on our hearts and minds: “Today is our best day.”  And that’s how we will choose to live.  It’s a blessing to do life with this man.  Untitled-1ALS AWARENESS:

Many people have sent me private messages such as “Jeff looks great in the photo!”  He absolutely does, but what people often don’t realize is that he was lifted out of the wheelchair for that image.  Or “I read your blog and I see the words written, but it wasn’t until I saw it with my own eyes that I started to understand what ALS does and what you are going through.”  “What is ALS?”  “Tell me about your day?”  “Does it hurt?”

Jeff and I agreed from the beginning to LIVE ALS OUT LOUD.  To “live out loud” means to live with purpose.  Our desire is to be genuine, authentic and to live with passion no matter our circumstances.  As you know, ALS is an incurable disease that slowly robs the body of its ability to walk, speak, swallow and eventually breathe.  It is always fatal.  Jeff  has painful muscles cramps in his hands and feet, but other than that, there is no pain…he just can’t move.  His mind is sharp, but the messages from his brain to his spinal cord to his muscles are slowly short circuiting (or dying).  When messages are not sent, the muscles gradually weaken, twitch and waste away (atrophy).  Eventually the brain loses its ability to initiate and control voluntary movements.  Most people die of respiratory failure within 2-5 years from when the first symptoms appear (we are almost 18 months from the first symptoms, which was shoulder weakness).  Our purpose is to create awareness.  Without awareness, there is very little funding.  Every 90 minutes someone is diagnosed with ALS and every 90 minutes someone loses their life to ALS.  We must help create a world without ALS!

This video will give you a small glimpse into our daily life.  As I have mentioned before, it’s difficult to watch (or read updates of declining health) and even more difficult to live it.  Our days are very challenging…we run the gamut of emotions but our family draws strength from our solid faith and trust in our Lord and Savior, Jesus Christ. We hope to encourage you to be a light to others.  Life is full of hills and valleys.  We will all cycle through them all.  Link arms with someone, strap on your hiking boots, and go for the journey with them.  Change someones life, simply because they know YOU.

 

All our love,

Tara and Jeff

ALS Phase II Clinical Trial

Jeff and I travelled 6 hours round trip to Ohio State University today for a Phase II Clinical Trial. We spent 3 hours with a medical team who evaluated his total body muscle strength, breathing capacity, drew blood, and administered round 1 of the drug AMX0035.

Preclinical studies with AMX0035 in animal models of ALS showed that the drug combination can effectively inhibit nerve cell death and inflammation of nerve cells…essentially slowing down the progression of ALS. This is not a cure but hopefully steps towards slowing down the disease.

Jeff will drink a foul tasting powdered drink every day for the first 3 weeks and then twice a day for the duration of the 6 month trial. We will go to OSU every 3 weeks for evaluation. At the conclusion of the trial, Jeff will have access to the drug for 1 year while it remains in clinical trials (this is called Open Label Extension).

Medical Update:

We agreed to be vulnerable with you and to help create ALS awareness. While daily life is challenging, we live each day to the very best of our ability. We laugh more than we cry and we savor the little moments. Even just lying in bed while his IV is dripping has become my favorite place to be…we’re together. Driving…we’re together. Watching our boys rock climb…we’re together. I realize the update below is hard to read. It’s harder to watch and even harder to live. It’s a progressive disease so each post will generally reveal decline. AMX0035, here is where you come in and stop ALS in its tracks! There are brilliant minds working towards a cure and we hope and pray we will see the efforts of their relentless research. As I have mentioned before, we experience loss daily. To survive the fears of the day and the fears of our future, we focus on the good and we are committed to living extraordinarily well. Jeff makes me laugh every single day! He is happy and draws his incredible strength from his family, friends, and primarily from his Heavenly Father. I love doing life with this man! He loves me fiercely and it’s so easy to reciprocate.

In the past 3 weeks, Jeff has declined primarily in lower body mobility. He stopped driving 2 weeks ago because reaction time is declining. We turned in his sedan and are down to 1 vehicle. We will be purchasing a wheelchair accessible van ASAP. Walking is extremely difficult and he can only stand unassisted for short periods of time. He needs complete assistance standing from a seated position 100% of the time now. His ability to chew, eat, swallow and breathe still remain strong, however attempts to cough are very weak. Abdominal muscles are used for coughing (rectus abdominis, internal and external obliques, and the transverse abdominis) and Jeff’s are very weak. His core (including hip flexors) has atrophied and therefore he can not sit up in bed, roll over in bed, get up from a seated position, get into a car, buckle a seatbelt, put on sunglasses (headphones, a hat), carry weight, etc. Fine motor skills are suffering and therefore he needs complete assistance cutting food, opening bottles or food packages, getting dressed, etc. Using utensils are becoming increasingly challenging and getting his arms to his face to eat is strenuous and utterly exhausting. The weight of a cup is too much, so he uses a straw to drink.

His mind is sharp but his body just won’t flipping move! A former marathoner, cyclist, triathlete, skier, and adventurer, now can’t fold laundry, help with dishes, get dressed, drive Evan and Cole to rock climbing practice or wrap his arms tightly around me.

Heavy stuff.

On the bright side (we have many reasons to be thankful).

1. We just returned from a week in Colorado. I will blog about our amazing ski/mountain retreat soon. The views were breathtaking! We absolutely loved our time together with dear friends. We didn’t want to come home!

2. Our new home in Westfield, IN is ready for dry-wall and should be finished late May/early June.

3. We are in the midst of planning a summer full of dreams…Jeff’s 40th birthday on July 4th, hopefully a trip to the National Championships in Rock Climbing, and a 3 week vacation out west to explore National parks, introduce the boys to big wall rock climbing and Tara wants to summit a Colorado 14er. We have a lot to live for! And so do you. Get busy living!

All our love,

Tara & Jeff