Hello, dear family and friends!

As I sit here reflecting, I’m struck by how far and wide you all are – scattered across the globe, yet still so close in heart. Technology, for all its quirks and frustrations, remains a powerful tool that keeps us connected. Wherever you are, please know how deeply grateful we are for you.

Medical Update

Alongside routine heart appointments, Eli recently underwent surgery to address complications with screws and plates in his jaw, plus an additional procedure. He’s recovering well, and we anticipate another surgery ahead. Post-transplant surgeries are more complex due to anti-rejection medications and other post-transplant care needs, so we’re hopeful to complete craniofacial procedures beforehand.

We remain on standby for the heart transplant call. It’s a surreal kind of waiting, knowing that life could pivot in an instant. I think about it in the most random places: mid-dental procedure, still numb, or halfway through a haircut, dripping wet and sprinting out with my cape still on. I’m sure you can imagine a few laugh-worthy scenarios!

While Eli is currently low priority on the transplant list and Kya is navigating the listing process, we’re working through complex care decisions. The variables are unpredictable, and with more than one child to consider, it’s a balancing act between individual needs and family well-being. I should also mention, they are no longer “children”, but young adults.

Caregiver Chronicles: Mom Mode

If you know me well, you know I don’t sit still easily. A recent personality profile confirmed a few things you probably already suspect:

• Momentum is sacred – I don’t tolerate losing it
• Repetition? No thanks
• Attention to detail? Limited
• Technical issues and delays? I married a computer guy for a reason 😊
• Problem-solving? Aggressive
• Impatient and stubborn? Allegedly
• A whirlwind of activity who occasionally pauses just long enough to rewrite the rulebook – yep

Now, here’s a snapshot of recent caregiving moments:

• Managing 30+ prescriptions, including insurance authorizations – plus three meds for the dog. 😊
• A 15-minute doctor visit took four hours door-to-door, including 75 minutes of driving and lots of waiting
• Juggling multiple medical portals and passwords (thank you, tech-savvy husband, for the password manager system)
• Constant Follow-up: tracking who I spoke to, when, their role, and next steps – then following up…again
• Coordinating care with 20+ active medical providers for Kya and Eli – not including Eric or me (or the vet for the pets)😊

Bringing it Together

Despite our decades of experience navigating medical care and professional experience as a Social Worker, I often feel wildly ill-equipped for this role – my personality often works against me. I’m often a raging, frustrated, ready-for-a-fight mom before I even make it through the clinic parking garage. Just writing this has me taking deep breaths. It’s okay to laugh – laughter is the best medicine.

This important role demands tremendous effort. I’m easily drained by details and thrown off by shifting appointments. The care system is brutal to navigate. I often think about patients navigating it alone, overwhelmed by financial burdens. I often feel helpless… powerless. I’m at the mercy of a system I can’t move or fix in the short term (if ever) and it breaks my heart.  

I’ve learned to be more gracious with myself, more accepting of how I function and what I need to balance energy in and out. We’re doing our best to meet needs while creating a meaningful, beautiful life. I’m deeply thankful for a flexible job that allows me to be present. We’re grateful for the possibility of transplant and extended life – but that doesn’t erase the grief of dreams deferred, or the exhaustion of endless logistics and complicated decision-making. Watching your children wrestle with physical and emotional burdens doesn’t soften the ache.

Dandelions and Sunflowers

We moved into a new house when Kenny, our firstborn, was five years old. He boldly declared we had “the best yard on the street!” His reasoning? “We have the most flowers!” Our yard was full of dandelions.

When Kenny died at 14, six-year-old Kya picked a handful of dandelions for him as we walked into the building where his funeral service was held. Over time, dandelions and sunflowers have become symbolic of Kenny’s bright spirit. I planted sunflower seeds this year, but not one survived the rain. Dandelions, though? They’re resilient, wild, and unstoppable.

The Dandelion
A dandelion breathes into this field
A thousand wishes waiting to be revealed.
A field of love and of possibility
An opening up to graceful vulnerability.
A dandelion cries in this field
A grief much too large to shield
A field of heartbreak and of sorrow.
Holding onto hope for tomorrow.
A dandelion in this field
Shows a strength we all can wield.
In a field of both sunshine and rain,
A dandelion can only create from its pain.
~ Shayna Rose Maharaj

Across the Wind

So here we are, balancing the tension between hope and heartbreak, between logistics and love. We’re still showing up, still laughing, still planting seeds even when the forecast is uncertain. Like dandelions, we rise through cracks, carried by wind and memory, rooted in the wild beauty of what remains. Thank you for walking with us, for holding space, and for reminding us that even scattered across the globe, like blown dandelion seeds, we are never truly alone.