Not to us, O LORD, not to us, but to your name give glory, for the sake of your steadfast love and your faithfulness!
Over and over I read these words, “steadfast love.” I never dreamed in January just how God would choose to show me steadfast love. I would have buckled. I would have said it’s not true because it’s impossible. And yet here we are. And over and over again God shows me His incredible steadfast love ……. to give His name glory.
Friends and strangers alike have poured out so much love on our family, but especially Liam. God is teaching us so many, many things these months about himself and about his grace and mercy and sustaining power. But He is also teaching us about receiving.
I would way rather be giving. Whether it’s fixing a pretty bag of gifts or helping someone clean their house, I’d rather be on the giving end. There’s a humility that is learned in receiving. It comes with relinquishing control, of learning to live with humility because we truly can’t do it all. But it is also learning to live with gratitude when the gifts are so huge and powerful and we don’t deserve them and have no way of repaying them and often not even time to thank people personally. It kills me to get a generous check in the mail, put the address on my desk to send a thank you note, and then realize it’s not going to happen. So while we learn to receive over and over and over in a place of desperate need, we are also trying to learn much about giving so that when it’s our turn we can can give generously and well.
Two gifts in particular got Liam through the hardest stretch of chemo prior to surgery. One was the gift of a four wheeler to use for a few weeks. After being on crutches since August 5, it was the one thing that made him feel almost normal. Except for the fact that his mom didn’t let him go fast for fear the vibration would fracture his femur or tumor. I loved seeing his crutches thrown to the side in the grass as he gave the little ones rides back and forth, back and forth. He was suddenly flying through school to get outside. And best of all, the sparkle in his eyes came back!
The other gift was a friend, Marcus, who offered to take him hunting. Marcus had a friend who managed a large farm. He got permission to take Liam hunting there using his blind. Suddenly instead of sitting on the recliner, Liam was in the yard on a camp chair trying to practice shooting bow. Adam would run after his arrows and give him tips. I watch both boys with so much admiration. Liam for the way he faces a life threatening battle with an attitude I simply stand and marvel at. Adam for the way he faces losses and encourages Liam in so many ways that make him feel normal. Liam doesn’t often head to his keyboard on his own anymore, but Adam can suggest it in a way that gets him started. And Adam watches as he gets phenomenal opportunities like virgin hunting ground and simply cheers him on and helps him get set up.
Liam had one day to go hunting between his chemo sessions. I dropped him off and Marcus carried all his gear to the truck as Liam hobbled over on crutches. What followed next is nothing short of an answer to prayer. Liam and Marcus got settled in the blind, prayed God would send them a deer, and then watched a football game. Close to dusk several deer emerged right in front of them including a buck. Liam tried to steady his bow on Marcus’s arm, shot, and missed. The buck ran away, but their were too many pretty females calling his name. He came back, pawing the ground, and making a show.
This time Liam was positioned near the window and shot from a steady surface and got him! He thought it was a six pointer until he got there and realized it was an 8 pointer! Marcus said he’s never seen anyone move so fast on crutches! Virginia doesn’t grow many this size. We’re all sure he’s a direct answer to prayer.
A lot of people say they are busy and they are. I said it all the time. But you have no idea how much choice plays into that busy until you no longer have it. Most of the time, we choose our lives. Those activities and schedules we think we “have” to do. They’re choice.
When it all gets stripped away, you realize you had a choice. Obligations are still options.
This week I’ve been choosing to incorporate as many fun things as possible since it’s Liam’s best break week. Last time he had a break everything went crazy. He had a neutropenic admission and Zara had general anesthesia to get teeth capped at the dentist.
This week, it’s been possible to choose.
I chose to let go of the guilt of intentionally leaving my children again. My spirit had seen such lows and I was beginning to internalize what was happening far too much. My shoulders were so painful from tension that I didn’t dare to see a massage therapist. I woke every morning with severe jaw pain from clenching my teeth through the night when I couldn’t consciously remind myself to relax. I was going to have to take care of myself if I wanted to continue to care for anyone else.
It was a precious week. Tuesday night a took pictures of David’s brother and family. Wednesday afternoon my friend Rosy came and helped me pull weeds and clean up outside. That evening I went out for dinner with my friend, Rhoda. Thursday evening I took baby pictures on my front porch since I didn’t want to leave the kids again. The girls happily played peekaboo over my shoulder to make Grayson laugh. And Friday night, David and I got a date night! We get so little time together these days and nights!
Today I was reading Psalms and our situation seemed so similar to the Israelites at the Red Sea. We are literally at the brink of surgery. It should be happening right now. But we can’t get the doors to open.
Our fathers when they were in Egypt, did not consider your wondrous works; they did not remember the abundance of your steadfast love, but rebelled by the sea, at the Red Sea.
Yet he saved them for his name’s sake, that he might make known his mighty power.
He rebuked the Red Sea, and it became dry, and he led them through the deep as through a desert.
So he saved them from the hand of the foe and redeemed them from the power of the enemy. And the waters covered their adversaries; not one of them was left.
Then they believed his words; they sang his praise. Psalm 107:7-12
I think that Red Sea is going to crack wide open before long — and just in the nick of time.
We had the best clinic day ever today!
We got out the door a little early and on a whim, stopped for donuts from the Donut Kitchen to take along in to clinic.
Liam lit up with happiness to be taking a fun surprise in for the people who love on us so much!
His labs looked great and he had energy again and no nausea.
Happiness can’t be bought, but buying donuts comes pretty close!
I felt so low today. I didn’t even want to have our weekly prayer and praise meeting. I didn’t know if I could even pray.
Only Justin and Naomi showed up and I felt relieved that no one else would see my fragility. Justin prayed that David and my faith would not grow weak. David prayed for our faith. I prayed that I could see God and His ability instead of the impossible circumstances. I felt so hopeless.
The fight to get insurance clearance for surgical consult was ridiculous. I spent hours and hours and hours and hours and hours on the phone with them trying to find someone who could make it happen, trying to expedite things. CHOP told us they were filing a complaint because of how difficult they were being. Our oncologist told us it was the messiest process she’d seen in ten years. I didn’t have time for any of it, much less this kind of fight. The time I should have been able to spend with our kids or taking a walk to clear my head was spent sitting in a quiet corner trying to talk humanity into a people group who had lost touch with their heart and had absolutely no organizational skills.
But I hadn’t only lost hope about surgery. I’d lost hope about his chance to live.
That night Naomi handed me a gift bag to take upstairs when I took two crying little ones into the house. Inside was a waymaker tshirt and a mug. I’d been wanting that shirt but just hadn’t purchased it.
The next morning my friend, Jennie, messaged me and said the song, “Waymaker,” keeps coming back to her for us right then. This is what God has done over and over when I hit a low or am getting ready to walk into an extra hard thing with Liam. He sends two people with the same song or Bible verse so that I know the message is truly from Him.
When I told Naomi she said, “I ordered that shirt for you awhile ago, but I wasn’t sure if you even wear that kind of shirt. I felt like I was supposed to wait to give it to you until the time was right. And the mug was the same way. I got someone local to design and make it for you because I remembered what you said about the butterfly, but again, I didn’t feel like I was supposed to give it until the time was right.
Last night I felt like I was supposed to give you both.
Living with cancer is like living in the desert. It’s hot as fire. Your body and spirit are scorched by the heat. Walking in barren places, hoping you reach the other side.
The desert holds its own strange, prickly beauty at sunset and sunrise. Just like there are moments of profound beauty you wouldn’t have experienced without the backdrop of cancer.
It’s not considered kosher to speak of our grief and despair. People tend to marginalize those who don’t stay in happy, positive places. We are “strong” when we stay positive and happy; “weak” if we are sad, broken, or in despair.
Yet God didn’t respond that way to the words of His children. In fact, He recorded them as divine legacy for the rest of us to read.
Sadness and despair and lament do not need to be “normalized.” They already are normal. We need to enlarge our minds to hold space for the full gamut of emotions God created in the human experience. There aren’t “good” and “bad” emotions. We find some of them pleasant and unpleasant. We have some choice in how long we stay in certain emotions. But we cannot choose not to experience certain emotions ever. To refuse to acknowledge them is dishonoring the God who created them.
The same people who don’t want to hear your loneliness and despair may want to read Psalm 102.
Hear my prayer, O Lord, let my cry come to you! Do not hide your face from me in the day of my distress! Incline your ear to me; answer me speedily in the day when I call! Because of my loud groaning my bones cling to my flesh. I am like a desert owl of the wilderness, like an owl of the waste places; I lie awake; I am like a lonely sparrow on the housetop ….
He regards the prayer of the destitute and does not despise their prayer.
Let the be recorded for a generation to come, so that a people yet to be created may praise the Lord: that he looked down from his holy height; from heaven the Lord looked at the earth, to hear the groans of the prisoners, to set free those who were doomed to die, that they may declare in Zion the name of the Lord and in Jerusalem his praise, when people gather together and kingdoms, to worship the Lord.
Tonight a small band from church held a concert in Liam’s honor. They invited the boys to open. Adam and Liam played three of their own songs and “This is where the healing begins.”
David & I feel so lost in grief this weekend and our boys are singing of faith in front of crowds. So often, their words and music lead my heart back to Jesus. Maybe this is what Jesus meant when he said, “A little child shall lead them.”
It’s been a little over two months since Liam’s initial Xray.
Tonight we went to a birthday party. It was our first normal social event since cancer. The big kids immediately dove headlong into a tackle football game while Liam watched. David and I sat in disbelief and sadness. I don’t know why I expected that after not seeing him for two months, they would give up one evening of playing running games, but I did. The reality of this being his life forever is so hard to bear.
Even if he gets the least invasive of the three life altering, invasive surgeries, he will never run again. He’s not interested in rotationplasty which would amputate his leg, but let him run. And if he saves his leg, running is out. There is too much risk of breaking the donor bone or rod and / or splintering the ends where it attaches into his own bone.
The grief and sadness was so heavy.
Then I heard in conversation that the rest of them were all talking of going to the beach and, of course, I wasn’t included. Again, my new normal. But such a fresh, realization of the depth of the valley we were in.
You get marginalized when you’re in painful situations, not because people don’t care about you, but because your life no longer fits the puzzle. Our world stopped and everyone else’s kept on spinning. And when you get an hour or two to re-enter, you realize you don’t sync.
Moms are clucking over their teenagers tackling each other to the ground over a football and worrying they might get hurt and you’re watching your son hop on crutches wondering if he’ll have to have his leg amputated.
You don’t get invited to anything anymore because everyone knows you don’t have time. When you finally feel safe to leave your child for an hour or two, none of your friends are available because their lives are a scheduled whirl of normal.
You long to have a normal conversation only to find yourself triggered when it happens. When someone talks about how busy their week is because they have appointments to get the rugs shampooed and they want to repaint the house you don’t even know what to do with the emotions rising inside of you. That is their life. It’s a necessary busy. But you’re in over your head researching cancer therapies and outcomes and your brain has trouble finding space for even ten minutes of listening to someone go on about the details of their house.
You just don’t fit anymore. And sometimes, that’s the loneliest part of it all.
The Lord reigns, let the earth rejoice; let the many coastlands be glad!
Clouds and thick darkness are all around him; righteousness and justice are the foundation of his throne.
Fire goes before him and burns up all his adversaries all around.
His lightnings light up the world; the earth sees and trembles.
The mountains melt like wax before the LORD, before the Lord of all the earth. Psalm 97:1-5
No one wants a stormy God.
We want a God of peace and blessing, but God also works in fire and lightning — the God of brimstone, horrific storms …. and cancer.
Today, this is my prayer for Liam:
He preserves the life of his saints; he delivers them from the hand of the wicked. Light is sown for the righteous, and joy for the upright in heart. Psalm 97:10-11.
Oh, Jesus.
Be present with every mama who is reading more about her child’s cancer type and gasping for air all over again. For the mama who physically sucked in her gut because she feels like someone punched it again. For the mama who can’t cry, because the tragedy is so deep, but the fight is so intense, and her family’s needs so great there isn’t room. She has to breathe and eat and sleep and carry on because she is so desperately needed.
Carry her uncried tears in your bottle and hold her safe in the future when the time comes to fall apart and release.
Day two of the same brutal mixture.
It’s so horrible beyond words. Liam is still so nauseous from day one and then we have to give him the same round on top of it all. Jesus, have mercy! I thought I can usually find words, but there just aren’t any for this kind of thing.
Worse, we’ve opted to do a rescue med to protect his hearing. The sodium thiosulfate happens six hours after the cisplatin is finished and it will make you vomit. It doesn’t matter how many drugs you take for nausea, it will make you vomit. Because of the timing, it happens during the middle of the night.
At least this time I was prepared and asked the nurse to wake me before administering it so I could sit behind Liam and help him instead of waking up to projectile vomiting. Liam hates how the nausea meds make him feel and usually opts to do as little as possible. He’d rather throw up some than feel so stoned and lightheaded.
But after an hour of non-stop dryheaving he said, “I can’t do this anymore.” Mercifully, the ativan knocked him into a medicated sleep.
On Saturday, he wretched all day long. At first it was every five minutes. Around noon, it spaced out to every fifteen, and finally toward evening every thirty minutes.
When night fell, he slept. Thank you, Jesus.
On Sunday he begged and begged to go home. “What do I have to do to go home? I’ll even eat broccoli.”
It seemed too soon. We have fluids and zofran IV at home, but if we go home too soon, we risk needing to return to the ER. The ride home wipes him out completely. But I couldn’t bear his tears. Let’s go home. We’ll figure it out.
Kytrell, Benadryl, Ativan, Dexamethasone, Emend…. they’re all good drugs; but nothing compares to the feel and smell and taste of home.
