Gap Fillers

Having experienced the front lines of two major health crises, I’ve grown in my understanding of and appreciation for our health insurance. We are blessed and I’m grateful but navigating the complicated health care system in general is never free of frustration or big gaps in coverage & care. As Rudy’s primary caregiver and now as a patient, I’ve shed my fair share of tears over denials and bureaucratic dead ends that just don’t make any sense and end up feeling like salt in an already wicked wound. The big gap we’re facing right now is in home health care. I don’t qualify for short term rehabilitative care, nor long term hospice care (yet) and government assistance through the social security administration based on my diagnosis is out of my reach because of my lack of work history. I don’t share this to whine or engage in a political debate about health care reform but simply to illustrate that no matter how hard we try to protect and take care of ourselves, there will always be gaps in the system…which is why “it takes a village” and why I’m so grateful for mine.

For the past year and a half, these lovely ladies have been on a regular daily rotation doing my house chores & errands and in recent weeks, have helped fill the gaps in my personal care! It is humiliating and sometimes uncomfortable but how grateful I am for the tender, hands on care of these friends willing to learn how to fill a feeding tube, wipe my dirty derrière or give my fatigued muscles endless massages with no promise of a payback!!! I am humbled.

What blesses me further is that these women represent a fraction of all the friends who have offered to help…and those who come alongside us in a variety of other ways too numerous to list. So, dear village, in case I don’t say it enough, thank you. Thank you for being the hands and feet of Jesus for me and encouraging a fragile heart in the process.

My favorite gap fillers of all!…

The more dependent I become, the more grateful I am for my peeps. But there is a flip side and the more dependent I become, the more I fear being remembered as “ALS Trish”. Rolf eloquently addressed my fear in his latest poem:

“I hear you singing
The melody dances
Gracefully floating
Spinning in the air above me

I hear you laughing 
From deep within
With head thrown back
Wind and sun in your hair

I see your eyes 
Focused and inviting
Drawing so many close 
Into safety, warmth and friendship

I see your hands
Nimble and skilled
Creating beauty
Patting a happy head
Bringing order
Gently soothing a troubled little body

I hear your voice
Softly reassuring 
Forging connection
Welcoming and connecting.

Committed to see what’s really you
Not the distortion before my eyes
The preciousness of each second 
Makes the robbery of so many days 
more gutting a crime

To think that love could ask this much
Yet leave me here with empty arms
Though tears may fill my eyes
They won’t be what floods my memories

I promise”

The dedication of the remodeled rescue mission on June 20th was so rich. The generosity of so many resulted in an overwhelming honor for which our family is deeply grateful.

9 thoughts on “Gap Fillers

  1. It’s extraordinary that amidst all you are going through you make paramount your appreciation of those whose honor it is to help you in any way possible but that’s who you are, and part of why you are loved by such caring and remarkable people.

  2. So grateful you have so many friends close by to help you do what those of us at a distance are unable to do. You look wonderful and I’m thankful you are blessed with so many of God’s helpers.

  3. Precious Trish! oh what a wonderful village of friends and family you have! You will ALWAYS be remembered for your grace, loving kindness, gentleness, strong Faith in the Powerful and Loving Jesus Christ and how you have been HIs hands and feet in all that you do! I love you and am sending blessings your way. Hugs to each of you!

    1. I am so very grateful for your team of lovely ladies…. Trish- it would be an honor to serve you if I lived close and I am sure that is what your ladies standing in the gap feel too!

  4. Rolf’s gorgeous poem was one of the best things I’ve read online in ages. I was in tears when he posted it – and your beautiful tribe is amazing! But I am so sorry to read yet another sad example of how broken our healthcare system is!!! Continuing in prayer for all of you . . .

  5. You are ever-
    Trish to me💞,
    precious friend!👩‍❤️‍👩

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