On growing unafraid.

10.31.2022

 


So much of my anxiety stems from future dread. I, at times, can even begin to resent God for not bringing me peace when I ruminate over those future moments.


 I recently read "God doesn't give you the grace for the what ifs. He gives you the grace for what is." I wish I could remember who wrote it. 


In the past few months since this all began, I can affirm these words to be true. In the actual moments of suffering, he has been near and has sustained us with a weird okayness. My worst moments have been in anticipating future moments, not actually living them. Even the darkest nights have been made darker by fear of what lies ahead. But as Amelia Earhart has said"Fears are paper tigers." Right now they roar, but my worst fears are not yet coming true. Perhaps, Lord please, they never will. 


To all my anxious ones, and even to my own heart, if you know Jesus, let me remind you from this now familiar place: He'll give us what we need for what is actually coming. But we don't need to sort that out.  Some of you have reached out, and in honest admission, have shared that reading our grief makes you fear grief is coming for you or has exasperated your own anxieties....I get that fear....but that isn't how it works. Grief like this isn't contagious like that. Praise Jesus. 


And so, take heart. God doesn't equip us for the imaginative doom you and I so easily create in our minds. It isn't real. It isn't real. Friends, it isn't real. 


Yet it's stealing real energy and hope from today. And that means less energy to do the good work he's prepared for us to do. 


This is where obedience comes in with taking every thought captive. (2 cor 2:5) And if I can ask anything of you, it's to get on with it. Good overcomes evil because good keeps showing up. Fear makes it so hard to think straight, let alone do good. (Want to hear something crazy? The Bible commands "Fear not" 365 times. Why that number?)


And while this diagnosis and path is something I don't think I ever could have even imagined.  And at times I feel like God may actually grind us down to dust, I remember this: if he does....God took us from dust, and he can breathe new life into us if he decides to crush us completely. We're his. But his character has shown me he does not do such things. 


But here are some things He has done: He's walked thousands of kids and their families down this path... And while we don't know the way, he does. So many who have known cancer have told me. He frequents these halls.  He knows the effects of it all. He knows the world and her people groan at all the brokenness. And he works to make all things new. He's working to make my boy new. He's working to make my own heart new. Perhaps soon I won't be so afraid? And perhaps soon, my son will be healed. In Jesus' name. 


And while I wait,  a question comes to mind: how does one live through such unknowns?  So far, this is how I've found a way through: I wake up, realize God has continued to push air into my lungs, and I do the work of this minute.   While I do it at times weeping, I want to do it less afraid. And perhaps by reading this, you can do your work less afraid too. 


 Because we've always known living and loving was dangerous business...so, why are we acting surprised? We Christians know an additional truth: Christ knew our terrible situation and came to lift the heaviest burden we could never carry. The grave doesn't get the final say. He lived and loved us to death and back again....so that we never have to face the fear of our final breath. I don't have to fear my son's final breath. 


To truly live, we must do the same as he. We must love sacrificially as he, we must give up our claims to a future we never controlled and we must say "Your will be done." And just as he wept, so do we. We drink the cup we're asked to drink. 


But we also must remember, our Jesus laughed. 


Even knowing the cross was coming. Think about that. He laughed. When he knew the cross was coming. How? Perhaps  he was convinced the suffering allowed by His good Father would always bring joy. For our good. For his glory. Pain never gets the final word in Christ. He knew all the terrible things would become untrue. 


I don't understand it all, and right now pain seems pretty loud and there are lots of terrible things. But I'm getting a front row seat to see how it works, how he works, how he makes all things new.


So, courage, dear heart. We get to laugh because the cross has come. We get to laugh even knowing we may have to face a broken heart, body, mind...because even still what's coming after is even brighter than what's behind. We have good work to do. We have kingdom come..And our King tells us we can take heart. He's overcome the world and all the terrors in it. 


I'm learning this in this season. 

As one of my favorite quotes from Fellowship of the Rings goes: "


I wish it need not have happened in my time," said Frodo. "So do I," said Gandalf, "and so do all who live to see such times. But that is not for them to decide. All we have to decide is what to do with the time that is given us." 


We have good work to do. So we must get on with it. And perhaps in the doing, we'll learn how to do it unafraid. 


On Poetry and Presence

10.30.2022

 


I've heard it said that poetry is an effort to share reality, feelings or truth in as few words as possible. It works to connect the reader to the writer in a deeper way than mere storytelling may. Yet, with its brevity, comes a great chance for misunderstanding. How many times have I read poetry with another and one of us says "... I don't get it."?


But give it time and tragedy and joy, and I've found I can return to a poem old and read it new. The poem I didn't understand, I now weep through. 


I think in many ways, the bible is poetry. It has literal poetry in its pages plenty, but I think the whole book has a poetic essence to it. When I consider the vastness of God and how he has contained so much of his truth in a book I can hold in my hand, I marvel we understand any of it at all. How many times have I read my Bible with another and one of us says... "I don't get it."?


But give it time, and tragedy and joy, give it his gentle leading and revealing and Holy Spirit's care, and I can return to its pages old, and read them new. The gospel, the parables, the tragedies I didn't understand, I now weep through. I see myself in them, I see how he moves towards us through them and most importantly, I see him and his character and his all encompassing goodness. He's the Blessed Controller of all things. 


It is something tender when a reader reads a poem we ourselves wrote. When they groan at the right parts, laugh at the right bits, nod at the deepest phrases, we feel revealed. Isn't it such a sacred thing to share our poetry with another and for them to see us deeper for it, to understand? 


 It's a sacred thing God has offered himself up so willingly, in his word and in Christ and in Holy Spirit, so that in our wanderings on this dusty earth we can understand him deeper, and yearn for him greater, and soon -soon-join him in a place where understanding comes easy.


His parables- poetic patience, His word- a gift of healing, Jewish and Gentile history- to see there is pain in our past and pain in our future but soon soon, soon, there lies an invitation. Soon we will go where we always belonged and where poetry is not needed to understand one another's deepest parts. He gives us his words, himself, his presence and his beauty in the fullest measure our bodies here can hold. Can we even imagine what it will be like when those limits are gone? 


I understand my God's poetry a bit more because of this heavy season. And perhaps that's enough. To see a bit more clearly where we've been, where we're going, and the most cherished reality-to whom we belong. 

An update.

10.14.2022

 


(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. 






The Care and Keeping.

10.02.2022

 


I found this on our table after my daughter had worked long and hard on it and it has kept me teary eyed. 🥹 The word choice. 

We've been working hard to talk with our bigs about all this. There's a lot of studies coming out about how siblings of a child with a cancer diagnosis tend to feel like "the forgotten children." The effects of this reality can follow them well into adulthood. 

While this can cause anxiety in me at onset, it also makes sense. This past month has been a blur and it can be hard to hear every emotional bid our children offer when our heads are swimming in "what ifs" and medicine routines...but Christ can equip us to do this too. Every good work. This work is ours to do. So we've been working. Working to fight against numbing out and being non-responsive, working to talk with the kids and help them process again and again. Working to go back to the source of strength when we want to tap out. 

And as we show up to this day,  I think the bigs will be alright. And I think this is in large part because we follow our Christ. 

Being a believer changes the tides. As a Christ follower, we are called into the act of seeing. But in seasons of grief, we become so acutely aware of our limitedness. And while I, as a follower of Christ, am called in to seeing as he did, fellow believers are called the same. I can't fully see my kids as I need to. I know this. But my children are seen by so many more than just me and Ben. There are no forgotten children when a church loves their little lambs.  And what's more, the church keeps looking when others look away.  Seeing each other in the hard places is holy work. And I don't think you can keep doing it without Christ. It is too hard. 

Yet, because Christ saw our deepest dark and still moved toward us, he equips us to go and do likewise. 

I've been seen in more vulnerability in this season than I ever have before. There is no way to put a bow on this. And yet perhaps this is the best gift in suffering... When a friend prayed with me and wept and lamented " God, WE hate this. " I fully knew it was not just my family that carries this diagnosis. 



I was trying to explain to Eowyn that she doesn't have to hold us together as a family ( a common fear/idea big sibs carry from this) and that her dad and I can carry her big emotions too.  And she paused and said "but who carries you? Don't I have to a little?" And I told her no, because God has me. And she quickly replied "God carries ALL of us. " And I teared up because she spoke gospel to me. I'm not the only one caring for my girl. Or my boys.  He's carries us and he sends his people to make sure we know it. 

I think, if a ten year old girl gets a front row seat to how God carries an entire family so she doesn't have to, if she understands that this diagnosis can use words like "care and keeping." If she can look at this dark thing and walk away more nurtured and bright....this tells me something. 

God only wounds to heal. Like the surgeons working on my son, he only wounds to heal. I keep saying it to myself, He only wounds to heal. 

My little girl may walk away with wounds from this. But we know the healer. And she will know she's not forgotten. She'll be able to say "You are the God who sees me." Because she's being seen by his people and her God. 

He only wounds to heal. I may not see the fullness of that healing but I know him. And I know he deals gently with us. I know his heart. And now my girl is getting to know him too. She is in his care and keeping. 

"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28