An update.

 

(scroll down for the TLDR update. 🤍) 

Here is an attempt to answer the tricky question "How is Rowan? How is it all going?"

Tonight I was in my daughter's bed. As my oldest cried, we talked about how this is far worse than we could have ever thought. Yet, this is not at all as bad as we imagined. Both were fully true.  She asked if we could ever go back to the way it was. When I said we would-sort of-she rightly said "but I won't be the same." And there it was. Truth laid plain in the dark.  We can't go back, baby girl. Her insightful knowing makes me proud and breaks me into pieces. 

I can now control when and how much I cry. This is a skill I did not previously have. My husband, who used to pass out at the sight of blood, can help the nurses with the blood draws as my youngest screams in protest.  My son has grown a vocabulary for symptoms in record speed when he hardly spoke much at all before this. My older son has developed a knack for making legitimately funny jokes. My daughter is growing spicier and more clever by the minute, as any good preteen should. She also is beginning to test a faith she's been developing.  She's had such deep spiritual insights, I find I believe in God a bit more just seeing how he's caring for her. We all are changing leaps and bounds. 

We live in perpetual tension. We  hope for the future, while just doing the next thing. We have no clear end date, but we build schedules and life keeps going. Every hiccup feels acute. Yet, we have developed incredible skills of holding a fair amount of pain and sorrow. We cry at medicine and  laugh at the latest silly video all within the same morning. It always feels like something is fraying,  yet we feel held. Some friends have proven extra patient, others grow slightly sharper, fed up with the extra load. I get it.  Me too. I feel the sting, but I don't feel bitter.

And so, we walk a tight rope. Or perhaps we are the tight rope. Whatever it is, we hang in between two points of tension and are grateful neither has let go. 

Life is hard. Life is good. 

God is here. He hasn't taken us out of this. 

Our mouths can praise. Our mouths can groan

We try to show up for the kids. We feel maxed out. 

We absolutely believe. We absolutely need God to hold us fast. 

We feel anxiety and anger. We practice regular repentance. 

We're in a season of extra grace required. We don't want to require extra grace. 

Ben's parents are here and it's been such a kindness. Ben and I got to go to this last chemo together and we get to go to the next one too. This is incredible as next week we may have to sign a new treatment plan depending on the results of one last test. I'm grateful for God's timing in bringing them here, now. Come what may, we'll face it together. 

Chemo is going well. Rowans doing well, considering. Life feels almost easy-since we now define easy so differently. Easy being we made it a whole week without an ER visit! Or his blood levels are good so we don't have to weigh the possibility of a transfusion! He didn't kick the nurse during treatment! (P. S. My son can swing a proper fist and has in fact knocked glasses off a face. Bless you nurses. My skills of holding a child have improved. I'm both wildly impressed and ashamed of my child's knack for fisticuffs. If you're wondering, he 100 percent gets this from his mother..🙈) 

There's also the deep knowing in every other parents face on friday. When they say "have a good weekend!" there's an eery-ness. A low-grade anxiety.  Their knowing eyes send us hopefully on our way.   So many kids are facing so much of the same thing we are.. I've sat with 8 ethnicities in the same room. All holding the hands or the bodies of our babies. All smiling, holding. Knowing. Praying. Trying to sound okay. All going home to care for children fighting to live. All things considered, Rowan isn't the most complicated case. Cancer just had a tendency to bring quite a few complications. 

I hope I'm not making things sound too bleak. They actually aren't. Truly.  Certainly not bleak in the paradigm we live in. I suppose a better phrasing would be " We're getting used to it. " We get donuts on the way home and Rowan is getting accustomed to 'butterflies' in his port and teaching himself how to breath through nausea.  The bigs are getting clever with their entertainment and getting good at voicing their needs. We're taking time with each one and we're baking more together. We're outside a ton and we're all figuring it out bit by bit. Homeschool has been fun.  We're all eating and sleeping and dancing and crying and bathing somewhat regularly. 

Our capacity for it is growing. It's hard. It's good.

 The kids still laugh daily, so do we.  By Tuesday life feels normalish.  I'm learning to be like my husband and just focus on the next day and be faithful to it.  Rowan still lives for every 15 minutes, so chemo is old news by donut time.  I'm learning to hold Eowyn longer when she cries and laugh at Eli's jokes even when he follows me around the house while he thinks up a fresh one.  I've never spent more time snuggling each child every night. Asking hard questions. Making space for answers.  And perhaps that's the best part. I've seen my children better than I ever have before. 

 If we look at what's just infront of us: These rascals, this warm home, this good food and this homeschool, Ben's work, occasionally getting to go back to church when no one is sick, even chemo just on Fridays instead of daily....it doesn't feel so scary. It's just life right now. And soon life will be different. Even if it is never going to be the same. 

TLDR; update: it's been a good week! The best so far. Chemo went well. 5 left weekly. 3 left after. Maybe more, we'll see. Kids are still laughing, parents are too. Tears abound, but we were always big feelers around here. It's much worse than we thought.  It's much better than we imagined. God blesses through suffering. I'm convinced of it. And hopefully by the end of this, we'll laugh at the days to come. Right now that's a lot of work so we just laugh at silly videos and dark humour.