Hello you lovely friends and family.
In keeping with the holiday, Lissa and I would like to share some updates, love and our deepest gratitude to you all. Friends and family alike have risen to the occasion and we feel very fortunate to have such a wonderful tribe of people looking out for us as Lissa navigates through this new paradigm.
To Sonia, who created and monitors this site for us, we thank you.
To our family and friends who have shared the financial burden of this journey so far, we thank you.
To the dog walkers, meal providers, visitors, medical researchers, curators of CBD & THC and people sharing photos, stories and good vibrations, we thank you.
And to our Barn peeps who, love, walk, medicate, feed and groom our boy Smokey, we thank you all.
While Lissa is slowly losing her ability to walk and talk, we are both gaining strength in our ability to live through this storm in the best possible way.
Acceptance, not giving up, but an awareness as settled - in that we must live in the moment of her circumstances and face the daily evolving challenges. It is her strength, wit and grace that most days takes me by surprise. She is and always has been a fighter with strong convictions that have helped fuel her long career as a beautiful performer with a wicked funny bone. She draws great joy from making people laugh and is still a devilish expert in that arena. There are tears, but just as often there is a lot of laughter in the home.
After a denial by insurance for specific necessary features on her power wheelchair, we reached out to TEAM GLEASON for a grant. They are an amazing foundation set up to help ALS families obtain necessary equipment. I’m happy to report we have been approved for the grant and we should have her new chair in a few months.
Lissa is having more difficulty speaking so you may not be receiving as many phone calls of late. Her texting and computer skills are still working handily. I am researching communication devices for her in an effort to stay ahead of the curve.
I am in contact with ALS Golden West chapter and have joined a support group which was a humbling experience. Truly inspiring and helpful. All of the caregivers and patients are real warriors and incredibly giving and wiling to share their experiences and be a guide for us.
Our recent trip to Phoenix was a success, so some of the fears and unknowns around travel have been allayed. We are now planning a second trip up the coast with the dogs for our anniversary which we are both looking forward to.
The new normal is beginning to take root and we are getting braver and stronger in our convictions that we are still two people, very much in love with a lot to offer each other and our friends and family!
Love to you all!
You bunch of turkeys….