I’d like to forget today ever existed if that could be arranged. My smile and Justin’s “funny face” pictured here were both very momentary. Another day of chemo at clinic but with an extra helping of difficult.

Justin’s port (pictured above on his chest) access and de-access did not go well. He cried in pain and fear while we tried to keep blood from pouring out of his chest. Aghast, he screamed, “there’s a hole in me!” And he wasn’t wrong.

His nurse said that, most likely, scar tissue has built up around the central line and was irritated today by the needle puncture. I felt like screaming, too, until I remembered I’m the mom and supposed adult in this situation. I pulled myself together and did what any loving mother would do. I held him tight and yanked the TV in front of his face until he was too distracted to scream.

Justin is exhausted. I feel drained. I feel nauseated. I feel heartsick. I feel irritable. I feel like I’m not going to leave this place on the floor next to where he’s sleeping even though I really need to make dinner. I feel like I’m ignoring my other boys.

All of this will pass. It will all pass into an intangible memory, yet our souls remain securely in the hand of God.

Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Philippians 4:4-5

I don’t have to like today. I don’t like today at all. But I still have joy. Yes, it’s a little more blurry than usual, like I’ve taken off my glasses or removed my contact lenses. Yes, I am struggling to grasp a hold of it. I have to keep saying to myself, “The Lord is near, the Lord is near.” He has not lost control. This all has a purpose. (Romans 8:28)

Today is Justin’s birthday. He is six-years-old. Last night I looked through his baby book and had me a good, joyful cry.

Today is also Justin’s 225th day in treatment for Acute Lymphoblastic Leukemia. Still in remission.

 Thank you, Lord, for saving his life.

Moments after a spinal tap, Justin is sleepily watching a movie.  Today was the first time he said, “My back really hurts.”

I sit close by tucking warm blankets around him, stroking his head, holding his movie screen for distraction until my arm aches.

I no longer see fear and distrust in his eyes, but something like resignation. He is adapting.

I don’t like this. Adaptation. To cancer treatment.

But God is here and His grace doesn’t fail to meet us in the mess.

Justin has prayed for his hair to grow back. We excitedly shampooed the first evidence of regrowth last night.

Sometimes waiting and hoping. Sometimes not seeing, desperately searching. All needlessly. Because grace finds us.

And grace is in the business of details. All the little stuff that gives reason for joy or gets us all kinds of frazzled.

Grace finds me when I’m tired and worn and not even looking. Finds me when my son’s single, giant tear falls into my hand as a needle punctures his spine. And grace has found me rejoicing in the bathroom over new  hair that makes all the difference to a young boy.

So we were notified yesterday that Justin has been granted a wish from the Make–A–Wish foundation. His wish can involve something he wants or somewhere he wishes to go.

Justin has been wishing to go to Legoland since he saw the commercial on the hospital television. I assumed this would be his wish.

But, curious if anything had changed, this morning I asked him. “Justin if you could do anything, what would it be? What is your biggest wish?”

He did not miss a beat. “To be a swimmer in the Olympics.”

Wow. Doubtful that the Make-A-Wish people could get us to Rio de Janero in time to hop in the pool with Michael Phelps, I asked again.

“Well, if you could go anywhere, where would it be?”

Again, Justin didn’t miss a beat.

“Heaven.”

Forget Disney World or a puppy, this kid dreams big.

What amazed me most about Colonial Williamsburg were the men and women who stood for hours – full costume, tights and everything – in the heat. And still managed to smile and say “Good day, Madame.” I was tempted to ask, “Do you really like this job? C’mon, be honest.”

My favorite stop was the Governor’s Palace, mostly because it was like Lady Mary Crawley (Downton Abbey) meets Scarlett O’Hara (Gone With The Wind). The palace had all the necessary elements of English and Southern snobbery. Although I don’t know why. They pooped in pots.

Other favorite moments included enjoying English fare at an authentic 18th century tavern and watching Michael mix clay with his feet. We learned that children in colonial Virginia worked with clay, making bricks, for up to twelve hours a day. What am I doing wrong? My boys complain over taking out the garbage.

We are back at the campsite now, and the boys are swimming happily. I’m hiding behind a deck chair trying to get a moment’s peace. Thank you for journeying with us.

Me driving the RV. Terrifying. Jolting and fish-tailing down 95 south, we made it to the Williamsburg campground without incident. Unless you count m pressing the gas pedal while Jeff was only half on-board, almost amputating his left leg. Well, almost doesn’t count.

After dinner at Cracker Barrel, where Justin exclaimed, “This mac and cheese is from Heaven,” we made camp under a clear, star-filled Virginia sky and sang with the cicadas.

Tomorrow we take in some colonial American history.

Justin’s doctor approved travel. It’s Hershey Park then on to Williamsburg, Virginia.

We’re going camping! The make up is off and the camp fire is on.

We have reached the seventh cycle of chemotherapy. A certain medication has been increased and is causing Justin foot pain that comes and goes. He says, “it feels like I’m walking on needles.” Rest, Tylenol and ice packs have been very helpful.

Day 197. This is a fifty day cycle with visits to clinic every ten days. Justin will receive the second of five chemo infusions today. His blood counts are exceptional as of today and if all is well, Justin will move into “maintenance” chemotherapy at the end of this current cycle. More on this to come…

Justin is thin and pale and without his signature thick, dark hair. Before cancer, Justin was willful and athletic, solid and robust.

Ironically, though, he seems stronger to me now. Because he is rising to the challenge of difficulty. We knew he was tough, but cancer is revealing his tenacity and forbearing spirit in the midst of great trial.

God is already honing and shaping strength in character at Justin’s young age. And He gives me wisdom to nurture and cultivate these characteristics.

Pushing Justin to be strong means I have to pull it together and step it up too.

Justin asked me last night if his “hair will grow back by the first day of school.” It’s the littlest things, sometimes, which threaten to get me down.

“I honestly don’t know, honey. But you don’t have to look like everyone else to be awesome. And you are.”

Are not five sparrows sold for two pennies? Yet not one of them is forgotten by God. Indeed, the very hairs of your head are all numbered. Don’t be afraid; you are worth more than many sparrows. Luke 12:7

Justin’s white blood cell count is up from 10 to 1400. He is no longer at high risk for infection and, no, we didn’t need to pack that bag for the hospital. As we wait for a spinal tap and chemo infusion, I am reminded that yesterday marked his sixth month of treatment for acute lymphoblastic leukemia.

Justin’s blue eyes now tell a deeper understanding of the darker places in this world that hurt but make us stronger. He knows of miracles, flooding steely grey skies with light and bringing us to our knees. He has seen firsthand what prayer and God’s sovereign hand touching the realm of modern medicine can do. And he has lived in step with a portion of grace that transforms hearts and changes stories.

Six months ago, his story changed. Our story changed. I have tried to share our journey with absolute honesty, conveying that is it hard and I don’t like it. Yet pressing on. Trusting God.

And this is what I cling to. Sometimes clawing by my fingernails to grab hold.

But still clinging.

Forget the former things;
do not dwell on the past.
See, I am doing a new thing!
Now it springs up; do you not perceive it?
I am making a way in the wilderness
and streams in the wasteland. Isaiah 43:18-19