It’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!
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