Unlimited Light

EC166FE2-6DD0-424E-9441-7840EF287104Justin still sleeps with me every night.

“Mommy, can you please leave the light on for me? If I wake up in the night, I am afraid of the dark.”

”Okay, sure.”

”Someday when I die, I will go to heaven with God. And He has unlimited light!”

”That’s right, baby, that’s right.”

Someday when I am already gone, please.

I love you, O Lord, my strength. Psalm 18:1 

 

 

 

Advertisements

Day 752–A Photo Gallery and A Question Answered

Justin is feeling his usual ups and downs since the start of another round of chemo. One minute he’s a normal kid; the next minute he is nauseous, wiped out on the couch or having a roid rage tantrum.

Recently I have been asked this question several times: why is Justin’s treatment so LONG? Leukemia is called a “liquid tumor” because it’s not localized and less complicated to pinpoint. Even after many rounds of chemo, tiny leukemia cells hide undetectable in the blood, bone marrow, spinal fluid and testicles. Long-term chemotherapy is a “mopping up” of these cells, while also acting as a preventative for new and more aggressive cells to form. This is my understanding based on discussions with Justin’s oncology team as well as my own research. If all goes according to plan, we have 13 months of treatment to go.

Here in the photos, we are making time for Nicky and Michael, which is always a challenge to find. Jeff and Michael are in Philadelphia for the Eagles parade while I crash Nicky’s recess.

Justin tries a Big Mac for the first time to satisfy a steroid craving and TV-commercial-induced-curiosity. Buddy loves to play with the boys, and has turned out to be a good fit for us. Even though we should probably now replace the living room carpet, and I am gagging over the smell of wet dog. Gross.

Thank you for continued support and prayer. God is taking good care of us.

Day 748

1BD751A3-DB0C-4EDB-BB67-4949994D43C3“Mommy, what does it feel like to die?”

Despite attempts to drown it out by mentally quoting as many scripture verses and song lyrics I could think of, I didn’t sleep much last night because of this haunting question. And when sleep finally came, I was stuck in a place where Justin was lost. I kept looking and looking, but could not find him.

“Um. Well. I don’t know. No one really knows. But I don’t think it matters very much if you are a child of God because He will handle it.”

This answer seemed to satisfy him.

I didn’t ask Justin why he was asking. I know why. He’s brought it up before. Experiencing a life-threatening illness has given him some kind of curiosity or sensitivity or heightened awareness of his own mortality. Something like that.

So I don’t freak out or give false guarantees. I just try to validate his questions by answering them the best I can.

And the dream? Well, experiencing your child going through a life-threatening illness, I think, can definitely mess with the subconscious. I try not to give it too much credit. It’s just a dream. It doesn’t need to be any bigger than that.

Things always seem worse at night. But in the light of a new day, everything seems…better. More manageable. Less scary. Definitely less muddled by fatigue. Clearer. Less complicated.

The steadfast love of the Lord never ceases; his mercies never come to an end; they are new every morning; great is your faithfulness. Lamentations 3:22-23

The reality is that Justin is feeling sick today, and, in pain as well, but he is here next to me explaining a video game that I totally don’t get. And I am drinking Diet Coke to stay awake and pretending to listen.

We are okay. God is with us.

2342FF24-7137-4E53-8DA8-2FD00CC609B8Thank you for continued support, encouraging comments and prayers. Grace be with you, my friends.

A Very Present Help

A day at clinic in photos: Another round of chemo. Justin’s support team. A playroom with IV poles and bags of poison. Me trying to make it all fun or, at least, just more tolerable. A look at Justin the day after clinic. And Buddy being a faithful nap friend.

Not pictured: me and two nurses holding Justin down as he was repeatedly stuck with a needle for his IV placement. Also not pictured: me sending Luke and Michael out of the room to save them from being potentially traumatized; then pleading with God for help while we took a necessary break. Also not pictured: the Holy Spirit, who, indeed, calmed Justin and worked through myself and Justin’s nurse to get the job done.

God is our refuge and strength, a very present help in trouble. Psalm 46:1

 

Day 741

We have managed to keep Buddy alive and well. Also we kinda like him.

Tonight it’s brownie sundaes with a friend  and tomorrow it’s another round of chemo, a physical exam, blood counts and liver screening as well as enough steroids to take down a large horse.

Yesterday, I re-read the story of Jacob wrestling with God (Genesis 32). I always thought this took major guts on Jacob’s part even though God was clearly allowing him to even come close to being a worthy opponent. In the end, Jacob said he wouldn’t let go until he was blessed. Of course, God could have just flicked him off like a bug, but He did, in fact, bless Jacob.

Now I am no theologian, but I tend to think it was Jacob’s tenacity which prevailed and not his wrestling skills. God blessed Jacob because he PERSEVERED.

Again I saw that under the sun the race is not to the swift, nor the battle to the strong, nor bread to the wise, nor riches to the intelligent, nor favor to those with knowledge, but time and chance happen to them all. Ecclesiastes 9:11

Thank you for continued support and prayer.

 

Doggies All Day

Okay, last night was far better than my poopy-scrubbing-wind-chime-busting nervous breakdown. Buddy stayed in his crate without messing from about 10pm to 5am. Yay!

There was definitely this crying, howling, barking combo going on. But we rode it out in our beds, equipped with fans, headphones and ear plugs.

He saw a puppy doctor yesterday who says he’s very healthy. No parasites or fleas (gross). And he’s big. Twenty-one pounds – yikes!

All the boys love Buddy. But, Nicky, in particular, has been amazingly helpful with walking him and taking him to the vet.

Thank you for all the kind messages of support. Yes, I’m extra achy and fatigued, but I know it will pass.

Justin and I are reading the classic story “Ribsy” together so it’s doggies all day over here.

Justin will begin a new round of chemo early next week. Thank you for continued prayer. All glory to God for His grace and caring about the details of our lives; for giving us exactly what we need and, indeed, even more.

 

 

Reflections of An Unlikely Dog Mom

The lowest point, thus far, came at 4am when I found myself standing outside on a lawn chair cutting down wind chimes with kitchen shears because I couldn’t reach the hook. Why do we even have wind chimes? Why would anyone have wind chimes!

The puppy was crying. Justin was crying because the puppy was crying. So I probably made the worst possible move and let Buddy out of the crate for a potty break. Only he didn’t make it.

So I found myself with two crying babies scrubbing doodie from the carpet. And the sound of the wind chimes…clang, clang, clang. That was just too much.

But, then, there is this…

51A5281A-A343-462D-919C-6111ED809B7D

 

Puppy Love

3:02am. Everyone is sleeping peacefully except the one who got up to let the puppy have a potty break. There’s something about frigid air stealing through a bathrobe that really wakes you up.

Maybe I should have avoided this whole thing by faking a dog allergy.

But, then, look at these happy faces…

Road Trip!

Shopping for supplies, check. Read Golden Retrievers for Dummies, check. Personally climbed in borrowed crate to clean it out, check. Here we go…I must be out of my mind.

Justin is very excited. 🙂