The Good, the Hard & the Beautiful

October 4, 2026

The Good:

Not much this week with Lucas and that is a good thing. We received his 5th grade school picture - so handsome!!

Also, Damon & I have been discussing forming a non-profit organization over the last few weeks to specifically help children with early-onset FSHD through support, awareness and advocacy. What started with one child is becoming a mission to help many! Stay tuned as we watch God unveil this mission and reveals the lives He intends to touch through it.

"Fearfully Made. Fiercely Loved."

The Hard:

We finally got off the waitlist for another day of physical therapy. Yay! 🎉

I originally planned to put this in "The Good" section of the blog, but then... insurance.

Our insurance only covers 35 PT visits per year, and we have just 6 covered visits remaining with 3 months left in the year.

Right now, we pay about $50 per visit out of pocket. Once we reach our annual limit, the cost increases to $150 per visit. That means approximately 20 additional visits this year could cost us about $3,000 out of pocket instead of $1,000.

Here's what we're doing:

✅ Requested additional PT visits through insurance (denied based on plan limitations)

✅ Obtained a Letter of Medical Necessity from Lucas's PCP supporting ongoing "maintenance therapy" to prevent functional decline, increased pain, reduced mobility, and other complications

✅ Submitted the letter to insurance for reconsideration

Now we wait and pray. 🙏

If anyone is facing a similar insurance challenge, I'd be happy to share the medical necessity letter that Lucas's doctor provided.

Sometimes "The Good" comes wrapped in a battle, but we're trusting God with the outcome. ❤️

The Beautiful:

This week I spent time in Isaiah 41, and these verses could not have come at a better time.

Isaiah 41 reminds us to:

• Trust God's control over our circumstances, even when life feels uncertain.

• Reject fear and self-reliance, remembering His promise to "hold your right hand" (Isaiah 41:13).

• Remember that God's power is not limited to what He has done in the past. He is actively working in the present and preparing the future.

One verse that especially stood out to me was:

"Do not fear, for I am with you; do not be dismayed, for I am your God."Isaiah 41:10

When we reach the end of our own strength, we discover God's strength. His Word promises to uphold us, strengthen us, and keep us from falling.

As we wait to hear back from insurance and navigate the unknowns that come with FSHD, I am reminded to trust God's timing. The journey may be long, and the answers may not come as quickly as we'd like, but our hope rests in His faithfulness.

When we cannot see the way forward, God is already working behind the scenes. When we feel like we're holding on by a thread, we can take comfort in knowing that He is the One holding us.

And for that, I am grateful. ❤️🙏