The Present Light

64_large-thumbnail_lone_cottageLying in a mostly dark room with only a night-light casting shadowy figures on the walls. This was my terror. I liked to stay with Me-Me and Pop-Pop, where I left the door ajar and listened to the voice of legendary announcer, Harry Kalas, calling the Phillies game at a decibel only comfortable to someone with a hearing problem. But this voice of normalcy somehow made me feel a little safer from all the evil that, I was sure, lurked outside every door.

I used to be afraid of the dark.

Now I am afraid of a dream.

Sometimes, in my sleep, I go to a place where I cannot find Justin. I look everywhere desperately. I yell at people and refuse to give up. But I cannot find my youngest son. He is gone.

The same God who was beside my Holly Hobbie quilted bed now stands beside a night table laden with chemotherapy drugs and a bed, which sleeps a tired mom and chronically sick little boy. This is a Presence I know and recognize.

I still fear the dream. I may always fear the dream. But it drives me to a deeper understanding of the evil that does, indeed, lurk at every door and our critical need to be rescued from it. And the dark stillness I used to fear, I now realize, only serves to make me more acutely aware of the present Light.

In the stillest, darkest, quietness of night, what do you fear? Grace be with you, my friends.

 

 

Where The Day Finds You

Or suppose a woman has ten silver coins and loses one. Doesn’t she light a lamp, sweep the house and search carefully until she finds it? And when she finds it, she calls her friends and neighbors together and says, ‘Rejoice with me; I have found my lost coin.’ In the same way, I tell you, there is rejoicing in the presence of the angels of God over one sinner who repents. Luke 15:8-10

Maybe the day finds you tired, ill, lonely, stressed, over-worked, grieving or life-hacking it through until 8pm when you can put your kids to bed and finally get some peace and quiet.

Maybe you are just plain LOST.

There is Someone who searches for you earnestly.

Go to Jesus, and be FOUND.

Day 545

This and That 

IMG_5696Marine biology camp. VBS. New life Kids club. This week, I am mom, cancer mom, taxi driver, teacher and VBS volunteer. This week, I am tired. And grateful.

Special Thanks

IMG_5640Justin was visited by Marian Newell, author of The Sacred Ripple, which tells the story of her son’s battle with cancer as well as her journey with God. She and her husband gifted Justin with a new Kindle and a promise to ask their friend, a member of the crew on Air Force One, about a possible private tour.

The clothing company, Lands End, kindly surprised us with a large box of gifts in response to a tweet I posted recently. There were gifts for Michael and Nicky as well.

Tweet: Cancer mom confession — my favorite Lands End shorts are now a bit snug due to salt and vinegar chip binging. #ChoosingLaughter 

I think they knew better than to send me shorts in the next size up. Thank you for continued support and prayers. Grace be with you, my friends.

Day 540

I am happy to relay that reducing Justin’s dose of Vincristine has made a significant difference. In fact, he hasn’t complained of foot or leg pain at all since the start of this chemotherapy cycle. His next CBC will show if he can continue on the lower dose, and we are praying for that outcome.

This week, Justin, as well as Nicky and Michael, have enjoyed being part of our New Life Kids summer Bible club and selling water ice after church to raise money for our missionaries in South Sudan. Justin volunteered to read in front of the class, kept up with the other kids in a game of tag, and scooped water ice at our stand.

 

A course of steroids has left Justin tired, moody and craving all kinds of meat. And, of course, nausea is an ongoing problem. But, with the absence of pain, especially in the middle of the night, Justin and I have both been given some relief.

God continues to carry us, but not because of who we are. Not because Jeff and I lead a Bible club or raise money for missionaries. Because of WHOM GOD is, we are lifted up, sustained and restored.

Your righteousness, God, reaches to the heavens, you who have done great things. Who is like you, God?
Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up. You will increase my honor and comfort me once more. Psalm 72:19-21

 

Day 533

IMG_5582Today was spent in clinic for a check up and chemo infusion. Justin requested McDonald’s breakfast on the way. I pictured myself buttering hot cakes on the freeway.

Sure, I can do that. I AM MOM.

Hot compresses and epsom salts failed to clear an infection on Justin’s foot. Another course of antibiotics was added to this cycle.

Dosages of Vincristine are sometimes reduced in cases of severe CIPN (chemo-induced peripheral neuropathy). I told Justin’s doctor that the time has come. He agreed. I am hoping his foot pain is somewhat eased.

Justin’s veins failed to cooperate for the first IV placement. He took two needles today, one in each hand. There was shaking and sweating and tears, but we made it through.

Justin surveyed the damage. “Now I have a mark on both hands. Just like Jesus.”

Sobering. Precious.

Tonight it is steroids and fatigue and nausea and spaghetti with meatballs. And here we go again.

A very special thank you to a friend who gave up some of his summer vacation time to come along today. Benjamin was gentle and funny and supportive and exactly whom Justin needed. God knows.

A friend is loyal at all times and a brother is born to help in time of need. Proverbs 17:17 (NLT) 

 

 

There is Always Grace

Justin moved from crime scene level bleeding to a cold, mouth sores and an infected toe. Chemotherapy. A necessary evil.

“Mom I just wish I could feel regular again. Like normal and not sick to my stomach everyday.”

“You will, baby, you will.”

“Yeah but it’s so long, mommy. I have a year left, which is 365 days, then a bunch of months, which is a lot MORE days.”

I pull him close. There’s nothing I can say to make this all seem less cruel to a six-year-old.

But this is what I think: just stay ALIVE for me.

On a more positive note, Michael is enjoying parkour camp. (Parkour- the sport of moving along a route, typically in a city, trying to get around or through various obstacles in the quickest and most efficient manner possible, as by jumping, climbing, or running: his amazing parkour skills. Origin of parkour. French.)

He logged in many hours on the monkey bars in preparation for this week. This is all part of Michael’s intensive training to someday appear on American Ninja Warrior.

Today he met one of his Ninja “heroes” who competed in the women’s finals in Las Vegas. If she works out just a little harder, her arms MIGHT someday look as toned as mine. I mean, she can try.

She was super awesome. Michael was all smiles.

This has been good for relieving Michael’s anxiety, and, for that, I am grateful. There are going to be hard times. This is reality. And, yes, when things are difficult, they CAN actually get worse.

But.

There is always grace.

 

There Will Be Better Days

IMG_5531The bleeding finally stopped and Justin’s red and white blood counts are stable. He celebrated with a cheese steak. (To my international friends, this is a classic in Philadelphia — a sandwich made of chopped steak and melted cheese. Yum.)

Of course, we’ll need to keep an eye on this if the bleeding should start again because blood loss is a tricky thing for a child on chemotherapy. But we are able to monitor him from the comfort of our own home.

God has answered our prayers concerning all the possibilities that tend to run through the mind when a leukemia patient doesn’t stop bleeding. Yes, He does allow us to go through deep waters.

But never alone.

When your child is in treatment for cancer, your life is made up of many “todays” even if they are responding well overall. There can and will be bumps in the road. As adults, Jeff and I can process this and manage stress pretty well. (Aside from my personal Oreo crises, that is.)

Not that I never experience fear, but it is Justin and his brothers who really struggle with it. The unknowns. The interruptions. The chaos. Please continue to hold the three of them in prayer.

A very special thank you to our friends who spent the day with Nicky and Michael. Also, to my mom for tackling our very unappealing, sand-soaked beach laundry.

I didn’t love today.

But.

This is the day that the Lord has made.

This is it. This is the day we got. So I will find joy in my hope in Jesus, believing there will be better days. I will also scrub blood from a favorite Ninja turtles t-shirt and “the blanket” which we are never without. Grace be with you, my friends.

 

 

Thoughts From an Emergency Room

Blood flowed from Justin’s nose on and off throughout the night. For leukemia patients, this can be a sign of needing a platelet transfusion.

There is terror over the needle that will be stuck into Justin’s hand shortly. I managed to keep him calm for now. But they are calling in a child life specialist. I think his screaming protests were heard down in the graves.

Please hold Justin in prayer from the store, pool, car, park, kitchen, office, laundry room, wherever you are.

Though an army encamp against me, my heart shall not fear; though war rise against me, yet I will be confident. Psalm 27:3 

Day 524

 

Justin is the most content and pain-free that he has been in a long time. He loves the sand and sea. The break from routine.

Michael’s anxieties have been relieved or, at least, held at bay. I am rested. Well, until the post-holiday ascent of Laundry Mountain begins.

The Lord your God is with you,
the Mighty Warrior who saves.
He will take great delight in you;
in his love he will no longer rebuke you, but will rejoice over you with singing. Zephaniah 3:17

The MIGHTY WARRIOR — yeah, I’m with HIM. Grace be with you, my friends.

Thoughts From A Beach Chair

IMG_5491Three days by the sea and I am emptied.

No more is there me.

Just a nameless mass of melted muscle and darkening skin.

Just a tiny dot on the coast held in position by the weight of wind.

Just me being held by the sea.

It’s the sea who calls to me.

First few steps are ice but I don’t mind the pain.

With strong current, the sea pulls me into its endless space.

Just me being held by the sea.

I am floating away and there is nothing to stop me.

No one to ask anything of me.

No sharp edges or unrelenting disease.

Just me being held by the sea.

“Mom, I am hungry!”

An invisible cord pulls me backward too quickly.

I land hard in a chair.

“Mom!” I blink salty air.

A face comes into focus, outlined in sky.

I am the center of two little eyes.

I am mom. 

I fumble around until my fingers land

On a special ordered sandwich of mustard and ham.

More faces suddenly around me like seagulls swooping down on a discarded crumb.

“I must have fallen asleep.” But nobody pays attention.

Brilliant whitecaps push in to set me free.

Soon the moon will pull the sea to me.

Then pull me and my chair to the sea.

And I’ll ride the tide in my chair out to sea.

Just me being held by the sea.