Symphony in Chaos
The collision of emotions and events is almost too much to explain. How is it possible to feel thrown into the worst kind of abyss and simultaneously feel so carried by grace? How is it possible to feel as though e.v.er.y.thing has gotten disrupted and in other moments shake your head at how many things are already in place?
The girls are struggling so hard with the disruption of our staycation. We’d all chosen one fun thing we wanted to do, but the truth is, we were all looking forward to all of it. Now our Monday work day felt off. We’re so painfully aware of Liam’s limp. He was in so much pain from swimming and basketball on Sunday. Activity always exacerbates the pain. The lump that had been soft and palpable has grown hard and almost visible.
Obviously we’re not hiking Humpback today. Liam is on the couch with advil on board. But everything is up in the air. Should we still go to Ravens Roost to watch the sunset? His biopsy is tomorrow. Will it hurt him to be out late at night? We’d already been planning to take family pictures during this staycation (that was my fun thing and no one else except the girls was looking forward to that one. Go figure.) There was a huge rainstorm last night so pictures are tonight. The night we should have been meeting my family for dinner at Ravens Roost instead of hiking. But now the bumped plan is getting bumped. Most times we try to get a few family pictures on our own or I’ll set up the tripod and have a friend come by to get the kids attention and click the shutter, but suddenly I realized I didn’t have time for a redo. We had one shot on this before chemo started and it was last minute. My friend, Jessica, graciously jumped in and took photos for us.
Suddenly you are so aware of living life fully without holdbacks, but you’ve also got someone sick to think about and how do you live fully in ways that don’t leave him unable to live fully the next day?
Zara cries so much about the losses of the week. It breaks my heart. The boys are so bummed, but the overarching loss is so great the smaller losses make sense. Zara and Bella know he has cancer in his leg and that he has to get sicker before he can get better, but none of it makes sense to them. They’re just watching their camping trip and hike and pontooning at the lake go up in smoke. Even though we knew it would get late, we met my family at Humpback Rocks to watch the sunset after our family pictures.
Harrison is blowing us all away. He had delays orally and physically. We saw physical therapy for months for generalized low muscle tone plus left sided weakness. He’d seen a neurologist and developmental pediatrician. No answers. Just more therapy. Because of his physical delays he was still 98% breastfed at seventeen months. He hadn’t gained weight in months, but every time we tried to feed him anything he gagged and vomited. Not only was he breastfeeding almost every hour and a half throughout the day, he was so intolerant to so many foods I was on an incredibly restricted diet.
The day after Liam’s Xray he had a speech therapy appointment. She evaluated him and Harrison sat there listening to us talk and taking it all in with that way he always has. I was sure he understood almost everything we were saying. Because of Liam’s diagnosis and how overwhelming life was about to get, she sent me home with suggestions, but no follow up visit unless I felt like he needed it.
We got home and Harrison started reaching for food and saying num num about everything in sight. I couldn’t believe it. The child who fought food was eating! God is literally paving the way before us.