I could tell it was morning because there was a bustling that usually accompanies shift change just outside our room. I had made the difficult but necessary phone calls and now it was just a waiting game. Justin had hardly slept. His high fever had not broken. He was still in pain despite several doses of acetaminophen.

The doctor came in to assure me the ambulance was on it’s way, her shift was over and she wished us good luck. Luck. I don’t believe in luck. 

I ignored my back pain, fatigue and hunger. Jeff had arrived with an ashen face and few words.

Justin intermittently cried and lashed out in anger. I tried to pray in my mind but the only coherent thoughts I could form were, “help me” and “please don’t let my baby die.”

I carried Justin to the bathroom. It was then we realized it wasn’t that he did not WANT to bear weight on his feet but that he COULD NOT. He sort of collapsed when I put him down in front of the toilet, but we caught him up and sat him instead. He wouldn’t walk again for four weeks.

11 AM. The ambulance arrived and I noticed the first of many looks of pity we would experience that year. The scene they walked into was certainly one of desperation. A half-naked screaming child. A tear-stained, dumpy-looking mom trying, in vain, to comfort him.

Something about being strapped down on a gurney sent Justin into a new screaming fit that lasted the entire ambulance ride. But, you know, there is protocol. There was absolutely no consoling him. Although every fiber in my body wanted to rip those straps off and hold him, I sat by, helplessly abiding the rules and the nauseatingly bumpy ride. But not the EMT woman’s chatter. That was too much. She asked me question after question. I turned and looked her in the eye. “I’m sorry. I cannot talk to you right now.”

Justin only hit me when I tried to console him so I gave up, closed my eyes and prayed. I think I will lose it if we don’t get their soon. I need this to be over. Help me. Help me. Help me. And then, after an achingly long forty-five minutes, it was.

We were met by a team of nurses as Justin was transferred to a bed upon arrival to Children’s Hospital of Philadelphia. More pitiful looks from EMT and then they were gone. Justin was screaming that his feet hurt. I interrupted a nurse who was asking me too many questions.

“Please give my son pain killers. They would only give him Tylenol at Virtua. He needs something stronger. He needs it now.”

She spoke in a disapproving teacher-like tone that sounded as if I had just given the wrong answer. “He can have something after the doctor sees him.”

“No! He needs something now! Do you understand me?” The light was so bright in that room. Everything looked white to me. I felt dizzy. Justin continued to scream and hit anything he could reach.

She looked at me all wide-eyed. “Mom, I understand but the doctor will be in very soon.” Why is she calling me mom and why won’t she listen to me? And why is she saying she understands? SHE doesn’t understand ANYTHING!

“No! NOW!” She left the room.

The doctor was there a second later. He put the stethoscope to Justin’s chest. Justin threw it off of him and hit the doctor’s arm. “He needs pain meds!” Now I was yelling. Minutes later, Justin found relief in his first dose of oxycodone. And, mercifully, he slept. (pictured above)

Then called I upon the name of the Lord; O Lord, I beseech thee, deliver my soul. Gracious is the Lord, and righteous; yea, our God is merciful. The Lord preserveth the simple: I was brought low, and he helped me. Psalm 116:4-6

Cancer did NOT keep us from laughing and freezing and having a great time sledding with friends today.

Justin started another round of chemo yesterday at clinic. Today he is feeling sick and listless.

I am too.

Along with the new round of steroids come Justin’s food cravings. Spaghetti and meatballs is a big one. So it was meatballs on my stove at nine o’clock last night and a jar of spaghetti sauce broken and spilled all over the floor. Note to self: don’t do the hit-the-lid-with-a-butter-knife-trick when you’re tired and unfocused.

A shard of glass pierced my finger as I cleaned the floor and tried to answer yes or no at the appropriate times as Justin rambled through naming foods he would like to buy at Shoprite. I told him to just make a list, already, but then spelling “Cinnamon toast crunch” was a problem.

I took a deep breath, sat down and helped Justin make a shopping list.

The kitchen will eventually get cleaned.

I love them that love me; and those that seek me early shall find me. Proverbs 8:17

Now I don’t do New Year’s resolutions and all that. I mean, really, there is enough pressure in life. But, like any other person, of course I wish for better times.

2016 brought cancer. A lot of it. We lost a friend, Drew Franklin, and our brother-in-law, Dan Gendaszek, to Lymphoma and Neuroblastoma. We continue to experience, daily, our six-year-old son’s battle with Leukemia.

The thing is, I don’t think a TRULY better life is coming on this side of eternity. I mean, we can hope and pray for better cancer treatments and cures for disease. Both are AMAZING gifts of grace. But, the truth is, in one way or another, we are all still dying everyday.

Sin broke the world and ushered in the inescapable reality of death. (“Therefore, just as sin entered the world through one man, and death through sin, and in this way death came to all people, because all sinned—” Romans 5:12)  There is only one salvation, and His name is Jesus Christ. (“And there is salvation in no one else, for there is no other name under heaven given among men by which we must be saved.” Acts 4:12)

So, yes, I will hope and pray and continue to advocate for better childhood cancer treatments, cured disease and good health. But my eclipsing prayer for 2017 is that many will come to know Jesus as their one TRUE hope, who can pull us from the inevitability of death and set us on a course toward new life and light.

Yes, our physical bodies will eventually fail. But, if our faith is in the One who conquered death, then we will not be dying unto death but dying FOR life. Our death will not be an end, but a beginning!

I know, I know. We’re supposed to eat lots of good snacks and wear funny hats on New Year’s Eve, not think about our mortality. Well, as long as I am grounded in truth, I am okay with not being popular or following the norm. Although I do love those mini hot dogs.

There is no lasting hope in the turning of the clock. And it makes us…well…older. But, in Christ Jesus, there IS hope in a world without end.

Now unto him that is able to do exceeding abundantly above all that we ask or think, according to the power that worketh in us, unto him be glory in the church by Christ Jesus throughout all ages, world without end. Amen. Ephesians 3:20-21

The boys received a night at Great Wolf Lodge in the Poconos for Christmas. We are very grateful for many fun memories and time together as a family. We swam, treasure-hunted and enjoyed watching snow fall on the mountains.

Even though we had to bring Justin’s chemotherapy medications, childhood cancer and all its complications did NOT get to come along. For twenty-four hours, Justin wasn’t a kid fighting cancer. And Nicky and Michael weren’t siblings trying to carry the weight of an extremely needy brother, overwhelming stress on their parents, and often feeling lost in the struggle that they can’t fully understand. They were kids just being kids.

Last year, Justin slept a good part of Christmas Day, which we attributed to a very late night and a very early morning. Twenty-one days later, I carried him to the hospital and received a cancer diagnosis.

This Christmas Day, he stood in church, his voice floating up to my ears. “O, come let us adore him!” With all his little might, he sang words that seemed to come from a place in him that knows things.

I bawled out my mascara and, again, thanked God for saving Justin’s life. Here’s a little peek into our happy Christmas chaos. (The paper crowns are a British tradition Jeff brought from London on his latest work trip). Grace and blessed hope be with you, my friends.

May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit. Romans 15:13

Sunday School Christmas party.

To every thing there is a season, and a time to every purpose under the heaven: A time to be born, and a time to die; a time to plant, and a time to pluck up that which is planted; A time to kill, and a time to heal; a time to break down, and a time to build up; A time to weep, and a time to laugh; a time to mourn, and a time to dance; Ecclesiastes 3:1-4 

People often say they think I’m strong. I’m not. God is strong for me. Most of the time, I feel like the spider in Charlotte’s Web; fading, fading, fading. Until I think I’ll be all gone.

I’ve been carrying Justin and holding him up for 332 days.

The nightmares are hard. Acute leukemia means it comes on really hard, really fast. Behind closed eyes, I see a child burning up with fever, screaming in pain, refusing to eat or talk, needing another’s blood to save his life. And that child is mine.

So I am all warrior on the outside, wounded within. An almost year of treatment has gone by quickly, yet the days drag at a maddening pace.

And there is no choice but the horrors of a treatment that tortures Justin but saves his life.

Then Justin claps sincerely for children singing Christmas songs that he should also be singing. I can’t smile and take photos and wave to him like the other parents because all he can do is lean on me.

I’m all in an inner conflict with envy and he is not phased one bit, just happy for his friends. And I think…what character! But I also think of the cost. I’m so proud and so broken-hearted, I’m afraid some strange noise might come out of me. Something like a scream.

Then I think of Jesus. And the greatest warrior mother  of all time. She labored alone on a cold floor to bring Him into the world. She fed and clothed the Son of God despite poverty. She watched, helpless, as her son was disfigured and tortured unimaginably. She must have turned her face often, but she did not leave Him.

How she must have ached over the wounds in the body she once held and bathed and kissed. How she must have despised the soldiers who mocked and tore his flesh with a sword. How she must have longed to cover his nakedness and protect Him from shame. How she must have wished it was she on the cross in His place.

This is too much for a human. A young girl with a feeding trough for a cradle. A mother standing at a cross that hung her child. It was God holding her up, giving new life to each of her senses when they couldn’t take more. God chose her for this task, fully prepared to do the heavy lifting.

Mary wasn’t perfect. Mary wasn’t superhuman. God did the heavy lifting for her.

And when I am all spent and faded, He also does the heavy lifting for a nobody like me. This is Grace.