Tldr: The first step on my journey to support medically complex kids and their families is a certificate in Parent Coaching. It will cost $5000. I need to raise $2500, kinda quickly. Read below for a story of a time I could have used parent coaching in my journey as a medical parent for a snapshot of one of my “why”s.
I knew it was the right thing to do, but I was too tired, too worn, too angry at a system that didn’t support me, too alone to access the things I knew.
Have you ever felt this way?
Like there’s something hard right in front of you. And you know, somewhere deep inside you, how to step up and do it. But pain, isolation, and self-doubt paralyze you?
This is how I felt last year when my daughter was writhing in pain, needed meds, and needed her distonic body in a safer position than what she had moved herself into. At not-yet-seven, her muscles had superhuman strength, built up by her brain sending them messages to tighten, tighten, tighten. And to break the pain, she needed them to fold, release, let go. And to do that, she needed me to move them for her, against all the pressure her injured brain was putting into them.
I also needed access to her J-Tube port, which she rolled onto. And I needed her to roll onto her side to keep her from aspirating.
She needed all these things from me.
And, more than any of them, she needed love, guidance, and partnership in an unimaginable journey.
But I was tired. I was alone. I was grieving. I was mid-trauma. (My husband and I were diagnosed with PTSD but we always said, “We’re still in the middle of it, so it’s not PTSD, it’s just TSD).
…So I was triggered.
What I needed, in order to be who she needed, was to step back.
Take some deep breaths, recenter, reclaim, and regulate myself. Let her live in that pain for just 30 seconds to one minute, so that I could meet her in that pain well and with love.
But how could I step back and breathe when she needed me and was in pain? But how could I meet her need if I didn’t step back and breathe? But how could I step back and breathe when she needed me and was in pain?
I fought her dystonia and positioning with my body as I fought a cycle of mutual suffering with my soul.
Eventually, I found my way to doing the things I needed. But not before weeping and saying,” I just can’t do this…”
Lately, I’ve been wondering how this journey might have been different if I had someone to coach me through it. To help me access the things I know how to do. To implore me to take the 30-60 seconds to find myself before helping her. To give me sincere and knowing permission to take the 30-60 seconds. To make my eyes acquiescingly roll at the repetition of a tired but true oxygen mask metaphor.
Parent coaching is a thing. But what parent coach could possibly have understood my reality in a way that gave me confidence that I could stop trying to explain and instead rest into their wisdom and partnership in this difficult parenting journey? Unless you’ve stood trying to self-regulate in the presence of a choking child in pain, how can you understand how very very almost nearly impossible that is?
Lately, I’ve been reflecting on how others have received gifts from the ways I parent. And I’ve been wondering if this deepest call in my life: to parent well, and with love, and toward a loving world, might be a gift I can share with others.
So, starting sometime in December or early January, I’m pursuing a parent coaching certificate. The goal is to offer free or very low-cost parent coaching to parents of medically complex kids or kids with life-limiting diagnoses. As someone who has been – not exactly where they are, no two journies are the same – but as someone who has been on an adjacent path and understands a rare and lonely terrain.
And it needs to be free or very low cost because our medical and economic system keeps most medically complex families at or near the poverty line. We were told that if our income dropped below the national poverty line (which is way below the local poverty line) due to her needing my full-time care, social security would kick in just to get us right at that national poverty line (which, again, is way below the local cost of living). So, while paying for parent coaching is a worthwhile investment, parents of medically complex kids are already as invested as they can afford to be.
The parent-coaching program I’m starting costs about $5000. To keep my services at low or no cost, I need to not add debt to my family’s financial load.
Will you help me start this journey of spiritually informed coaching for parents in hard spaces?
I’ll be working on setting up a nonprofit that can take donations. But until we get it up and running, the best way to partner toward this goal is to “gift” us via Venmo (@Rebecca-Sumner-8) or Paypal (@rebeccasumner1). We have matching funds up to $10000, so to get to that initial $5000 for the first leg of the educational journey, we only need $2500. Ideally in the next week or two.
Rebecca Sumner 