Cracks

Although Amy was only with the kids for a short while because of Jonah's fever & neutropina, she managed to snap at least one picture of each child that captures their essence.  Here we have Julia, a little spicy sweet and silly all rolled into one.

Noah, posing cooperatively, responsibly ready to go, becoming a man right before our eyes.

Anna, a bit more reflective, observing from the outskirts, but ready to warm you with her smile and deep caring.

I love that boy so much, I could kiss the top of his head endlessly. There's a sweet reminder on his head these days - fuzz is growing back.  Cycle 6 should see to it's departure again, but for now, it's an anchor to the hope of days ahead.

Many posts ago, I mentioned the Beads of Courage program that Jonah is participating in.  This is what his bead collection is shaping up to look like.  Yellow for nights in the hospital, green for TPN, red for transfusions, light green for tests like MRIs, CTs, etc.

Skinny cowie is an ever faithful friend to Jonah and always close by.

This is the type of friend these girls are - the "put your feet in my lap so I can sit on the bed with you" type of friends.

These girls have known Jonah since before he was Jonah.  They've watched him grow up and love him deeply.

These faces, these hearts - I don't know why God would bless me with such goodness, but I'm thankful He has.

This is hard - this journey that we're on - and I hate that every post seems only to serve as an outline for a different angle of hard.  I guess that's the truth of it though.  This journey isn't something that you adjust to and recalibrate your norm to - it's always raw, always heavy - even when you find your groove, the pain and challenge of the journey are just below the surface.  It's amazing to me the new facets of the journey that trip me up with their scariness, their hardness or their sadness.

This past weekend, my good friends, Amy & Laura, from Boston came to visit.  It was a beautiful visit - filled with laughter, massages, at home Zumba, meals together and great connection.  We connected over the things good friends connect over - life and kids and hobbies and then we connected over the last 6 months.  We talked about the things that you don't say or ask over the phone, we shared the burden of pain and glassy eyedness of tears, we marveled at the progress Jonah is making and the resilience the other children demonstrate, we wondered together about the future.  It was a visit that filled my soul and surprised me with the hard.  These are some of the friends that we really "do" life with - we laugh together, talk about things that matter and play hard together - we never waste our moments.  Their physical presence in our story was both encouraging and another reminder how real this is.  In the past, when we part company we all go home.  This time, when we parted company, they went home and I stayed at the hospital, my new home.  I wouldn't trade a minute of their visit, but it did remind me that pain and promise are often hand in hand.

One of the layers to the pain and promise juxtaposition that the visit brought up, is that these friends are Avalon, NJ friends.  I have long referred to Avalon as my favorite week of the year, the chance to be with friends so dear in such a special place.  As our love for Avalon is not unique, now is the time that we have to commit to our annual June vacation. But we can't.  Even though Laura's son, Sam, and Noah spent 40 minute on the phone plotting how to spend vacation together, we can't.  Everyone else can, but we can't.  Between now and June there are too many unknowns with Jonah that make committing impossible - where will he be in the radiation cycle, which is dependent on when radiation starts which depends on both when the stem cell cycle starts (which is dependent on how his counts recover now) and how quickly he recovers.  Then of course we have to wonder about his physical capabilities - will he be walking or in his wheelchair, how will he manage stairs, can he get wet (central lines cannot get wet and he currently has a central line), will he still be on IV feeds overnight, how do we manage transportation over sand?  Around and around we spin and always land on the realization that we can't commit and my heart breaks in a different way.  Avalon is a part of the rhythm of our life, and our rhythm is all out of whack.

As I said though, hard is at every turn, so that is not the only hard.  We are days away from our final pre-stem cell MRI & lumbar puncture (January 28th).  These are the last hurdles to qualify for the mountain of stem cell transplant.  This is also where our friends, Noah's family, had the bottom fall out, when they found tumor re-growth.  I want to be stoic and rational and let it not be a big deal, worried that his family will feel inappropriate guilt about impacting our experience.  I am deeply grateful for their continued friendship as they keep walking with us when it would be easier to bow out.  The challenge though, is experience and exposure are fast teachers in this world, and these weeks will be peppered with times of anxiety.  It is during this time that I again lean into the words of Joshua 1:9, "Be strong and courageous, do not be afraid, do not be discouraged for the Lord your God is with you wherever you go." (rough paraphrase)  I am afraid.  I'm afraid we won't make it to stem cell.  I'm afraid we will make it to stem cell and it will be as hard as everyone says it could be.  I'm afraid of the radiation that waits beyond stem cell transplant. And I'm afraid of what is beyond that.  I know I shouldn't be, as God keeps showing up in our story, as if to say - "Hey, I told you'd I'd be with you all along", but I am.  There's no pretty bow to tie on it, and it feels messy, but it's honest.

This is a lot.  I wish I could say that these are the only hards of the moment, but that's not how this season is.  These are the two biggest and heaviest hards right now though and they're ultimately both about letting go.  Letting go of control that is only imagined and never real.  I cannot make Jonah well enough to ensure we can go to Avalon.  I cannot make Jonah sail through stem cell and radiation.  Let's be honest, if I had that kind of control we'd never be here in the first place.  Instead, my one bit of control is to rest in the truth that God is God and I am not. It is the sovereignty of Christ that knows our path, will walk it out with us, wherever it goes and will see us through to the other side of these hards.