Ask and You Shall Receive

My darling Lizzy,
Papa wrote this on July 31, 2025, after one of the longest days we had been through in a long time. Mummy and Aunt Susan sat with papa at Northwestern Hospital for nearly six hours while doctors told us hard things. But even on the hardest days, there were gifts. A breathing tube we didn’t even know to ask for. A researcher who promised to keep watching for us. A care team that expected to see someone much worse than the man who walked in. Papa learned something that day that he wants you to carry: ask for what you need. Ask God. Ask people. Ask the world. You will be surprised how often the answer is yes. As the Bible says — ask, and you shall receive. I love you my beautiful girl!

Originally written on July 31, 2025
Chicago, Illinois

Yesterday was a long one. The kind of long where you look up and the light outside has completely changed.

Grace, Susan, and I spent nearly six hours at Northwestern Hospital with the ALS care team — from noon until 5:30 PM. It was a full agenda. We met with nearly everyone on the team:

Neurologist
Pulmonologist (Dr. Coleman)
Nutritionist
Respiratory Tech
Occupational Therapist
Speech Pathologist
Cara from the Les Turner Foundation
Researcher from the Clinical Trials Team

These meetings are emotionally exhausting. If you’re in that room, it means one thing: either you have a devastating disease, or someone you love does. And with ALS, the conversations are never about getting better — they’re about slowing the decline.

That’s the reality.
A tough pill to swallow.
And a marathon to sit through.

I was in my wheelchair most of the time, completely wiped by the end — physically, but also mentally and emotionally. Thankfully, both Grace and Susan brought food and drinks so we could keep our strength up.

We did another Pulmonary Function Test (PFT). The results weren’t easy to hear: my lung function has declined by 10% in just three weeks. Stephanie, the respiratory therapist, adjusted my BiPAP settings — raising the pressure from 9 to 12 and extending the duration of each breath. In simple terms: the machine is pushing more air into my lungs, and that’s what my body desperately needs.

My lung capacity has fallen below the minimum threshold for any clinical trials at Northwestern. I’m at 46%. The current trial for which they are recruiting requires 65%. That explains why even a short walk from the couch to the bathroom leaves me winded — like I’ve run a marathon.

But there was hope, too.

We spoke to the researcher running Northwestern’s ALS trial. Though I’m currently ineligible, they’ve built a proactive system — he’ll monitor any changes to the trials or new studies that may open up. We’re on their radar, and he’ll reach out directly when — not if — something becomes available.

He made it clear: I don’t need to do the legwork. He and his team are watching for us. That, in and of itself, felt like a gift.

Stephanie also gave us a new nasal cannula with a daytime breathing tube — something lighter and more comfortable than the full BiPAP mask. Dr. Coleman told me to treat it like a best friend: use it often. It won’t weaken my lungs — it will help give them a break. That encouragement mattered.

We also got more clarity on occupational therapy. There are things I can do to make those sessions more effective, and I’m determined to follow through.

And here’s something beautiful: we didn’t even ask about the nasal tubing. Grace simply inquired, and boom — we were handed one, free of charge. Grace put it perfectly in her update that night:

“Also managed to secure a free nasal cannula for daytime use for Cecil so he doesn’t have to use the full mask. As the Bible says, ‘ask and you shall receive’ 😂”

That is my Grace. Even on the hardest days.

I’m incredibly thankful that Grace was able to escalate this appointment. Originally, we weren’t scheduled to see the team again until late August — a full six weeks from our initial meeting. But based on how steep the decline felt over the last three weeks, she pushed hard to move it up.

And here’s something interesting: while Grace and I felt things had gotten significantly worse, the care team was surprised — in a good way. They expected to see a much more debilitated version of me. From their clinical perspective, I looked better than anticipated.

That was encouraging.

But maybe that’s part of why these meetings leave me emotionally drained. In the world of ALS, the definition of “good” is simply that things haven’t gotten worse. Stability is victory. Getting to equilibrium is the goal.

So I’m resetting my expectations.
I may not get better than this.
That’s hard to accept. But I can fight to hold the line. I can work to stay strong mentally, emotionally, spiritually — and do everything possible physically to keep my body working for me.

I’ll lean on the medical team, but also on my incredible network of friends and family. On Grace. My everything. My anchor.

A Prayer

“God is our refuge and strength, an ever-present help in trouble.” — Psalm 46:1

Dear God,
Thank You so much for another day.
Thank You for how far You’ve brought me.
I’ve been through a lot in my life, but I’m still here.
I may not be where I want to be, but I’m not where I used to be — and that is a miracle.
Your word says, “Do not despise these small beginnings, for the Lord rejoices to see the work begin.” (Zechariah 4:10)
God, I’m at a place in life where I have a lot to be grateful for. Progress is still progress, even when it’s slow. I won’t let discouragement win. I won’t let the devil take my joy. Show me how to be proud of the steps I’ve already taken with You.
Thank You for never leaving me. For shaping me. For still making all things new.
I trust You with all of my heart.
In Jesus’ name, Amen.

“The path of the righteous is like the morning sun, shining ever brighter till the full light of day.” — Proverbs 4:18

“I can do all things through Christ who strengthens me.” — Philippians 4:13

GO ADVENTURE ◆ GO TRAVEL ◆ GO LIVE