The Unseen Battle of Advocacy: A Mother’s Story of Faith and Fight
The Unseen Battle of Advocacy: A Mother’s Story of Faith and Fight
No one warns you about the hard parts of parenting.
The parts that knock the air out of your lungs. The moments that leave you breathless, without a guide, without a manual. You figure it out day by day, doing the best you can with what you have.
But here’s the part no one tells you about:
The part where you become their advocate. The part where you fight fiercely and endlessly. The part where you pick up the pieces left behind by medical professionals who failed your child. When all they had was you to make sure they survived.
It’s a battle that stirs the trauma already lurking deep inside you.
And yet, instead of acknowledgment, you hear things like:
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“Good thing he has you.”
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“What about the other parents?”
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“Lucky you’re a medical professional and know what to do.”
But the truth is, I don’t always know what to do.
I didn’t know what to do when he was discharged in December with suboptimal nutrition management and no one to follow him. I didn’t know what to do while we waited five months for his care to be transferred to CHOP. But I did the best I could to keep him nourished and out of the hospital.
Today, I was told I did better than the so-called specialist.
When Advocacy Becomes Survival
I would give my life for any of my children. In a heartbeat.
There have been moments when I have sat on my son’s bed, listening to his pain, wishing I could trade places with him. But this is his story. And this is just a page in mine.
The last few weeks have been relentless, each day compounding on the next. Today was no exception.
On one side was relief—he didn’t have to replace an NG tube. On the other was fear—fear of what comes next, post-operatively. Fear of another layer of complications. Fear of not knowing if I had it in me to handle another hurdle. I am exhausted.
The tears flow freely. I am weary and restless. Holding it together in the daylight and falling apart in the shadows.
The Breaking Point and the Breakthrough
As I held Logan’s hand and prayed over him before they took him to the operating room, I prayed to our God who has gone before us. Who already knew what we needed. He knew what I needed. He had prepared the path.
For the first time in months, I felt like I could breathe—even if just a little.
We have an amazing surgical team caring for Logan postoperatively. I was able to share the story of the trauma we endured on December 3, 2024. I was able to express my exhaustion, my overwhelm, and my fear of going home to make it all up as we go. I shared the plan I created for him—because no one else did.
And they listened.
They got to work immediately.
Within 30 minutes of being on the floor, a nutritionist was consulted. A social worker began advocating for the egregious behavior of our DME company. A plan was formed to actually help Logan heal—one that works with his nutritional and ARFID needs rather than against them.
For the first time in months, I wasn’t the only one carrying the weight.
Faith in the Unknown
The truth is, Logan and I spend a lot of time together. And often, it is in the hardest of situations—alone, confined to a small space where he looks to me when he is scared. I hold a brave face until I can’t anymore. And sometimes, we just cry together.
But one thing remains true: I remind him every step of the way that we serve a God who already knows. A God who has prepared a way.
So today, amid the tears, the fears, the doubts, the exhaustion, and the worry, there was also relief. There was joy. There was praise. There was gratitude. There was love.
But most of all, there was faith.
A Final Word
If you are in the trenches of advocacy, exhaustion, or medical trauma, know this: You are not alone.
Whether you are a parent fighting for your child, a caregiver navigating an uphill battle, or simply someone who feels unseen in the struggle, I see you. And more importantly, God sees you.
If you need a place to rest and be supported, I invite you to join me at the Well. Because you don’t have to walk this road alone.
