Today marks 18 months since we lost Rudy. The 25th of every month has an impact on my heart but today carries a bit more significance, for sure. A year and a half. It feels like a long time and, yet, it also feels like it was just yesterday. My mind and my heart can be transported to that ER in Guymon, OK in a blink and I am there with Rolf, the big sibs and our boy fully aware of what was happening as I experienced it unfold and in total disbelief at the same time.
I only see Rudy in my memories. Rolf is having new visions of Rudy in his dreams…comforting in the moment but heartbreaking in the wake of the dream as Rolf so eloquently describes in his latest poem:
This
Is where I see you now.
It’s all I’ve got.
In the last moments of the night
You’re suddenly there
I rush in
As if the yearning would ever allow me to take my time
So aware of the seconds
I pull you close
The warmth of your cheek
Your instant affection
your inability to stay still
The love of your embrace
For as long as you’ll tolerate the interruption in play
I drink it deep
Knowing it can only be a moment
Readily accepting the cost to come
Be it the flood of tears as light dawns
Or days fogged in stupor
Remaining motionless
I keep my eyes shut
Clinging to the lingering wisp of each sensation
The smell
The sound
The touch
The weight of your body that just left my arms
you were right here.
What occupies my mind today is the many ways Rudy prepared us for the journey we are on with ALS…the situations are different but the landscape is very familiar and there is a calm that comes with the familiarity. I still wish none of it was a part of our story…I wish Rudy was spared his medical frailties and a life cut so short…I wish I would be spared ALS and the family having to walk this with me. And yet, in the midst of my lamentations, I’m very much aware of our family’s “second-nature” response to life right now…there’s a certain level of “expertise” and confidence with which we are navigating ALS that can be traced back to our boy…part of his precious legacy, I guess.
We miss you desperately, dear Rudy! May you continue to feel the love in our longing for you today.
Thank you for your prayers and extra expressions of love today dear friends.
Rudy's Beat 
Precious sweet friend. You and your precious family are constantly in my thoughts and prayers. Sending love and blessings to each of you today. I Love You!
Sending you all Endless Love and Prayers!
I was so moved by Rolf’s poem this morning – thank you for posting it here. I am right with you on everything, dear one. Yes, you and your crew have learned about disability and chronic, even terminal, disease and it’s impact on a family system. And yes, that is a strange sort of legacy gift from your beautiful boy. But oh!! This is not a ‘gift’ anyone wants. How I wish it were not yours to unwrap. Yet, it is. And you all are facing into it with integrity, honesty, and a deep love for God and for one another. Every word either of you writes in this space or posts online is a gift, a true gift, to all of us. Thank you both so much.
What beautiful words by Rolf. and this brings tears too: 😦 so heartfelt
We miss you desperately, dear Rudy! May you continue to feel the love in our longing for you today.
I hope you feel Rudy’s presence with you every step of the way and see a hummingbird today.
Your words, Rolf’s poem and each picture – beautiful in their own way.
It’s a cosmic swirl of pain, joy, death, life, beauty – so much beauty – inside and out.
Sending tears, smiles and love from Joyce and John
I just don’t know how anybody can be prepared for ALS, but I love that you recognize the familiarity of a lifestyle that respects a fragile health condition! I wish too that this all has been a bad dream and that neither of these diseases plagued your family! But I love that you are holding on to the great love of God for you all…..Higher than the heavens and beyond this reality…. Love you all!!!