The Beginning of The End

I think I've got the "Christmas" side of the struggle of this season worked out in my head now.  I know the "right" way to look at it, I've processed and know what I "ought" to remind myself as we move through this special season in respect to the holiday. I've learned, though, that doesn't mean every day my head and heart will be in a place of peace and joy about it, but that I feel better overall that I can handle it.  That I'll be able to make it through, remembering the real reason for Christmas--celebrating the birth of my, and Drew's, Savior.

But now I'm left with the other side of why this is a difficult season for us--because of where we were in our minds and hearts during this season last year.  It will be a year tomorrow when we had the scan that told us whether the trial was working or not.  It was, in our minds, our last chance.  I wrote in my personal journey that I never wanted anything so badly in my life.  That I felt sick that whole week, I actually hurt, as I anticipated what the verdict would be.  And then the day came, and some many stood behind us in support, joined us in prayer for positive results. 

A friend came with me for the scan that morning, but the day seemed to go all wrong from the beginning.  The wrong scan was taken, Drew's bone marrow biopsy was difficult--they had to puncture the socket in his hips three times on both sides, and still didn't get a very good sample.  Drew woke up hard from that procedure.  He was upset for quite a while, and it was so hard to see. My friend snapped this picture. I'm amazed at how many times I've asked her for it (I kept not saving it).  I don't want to remember that day, but it's like I have to see it.  I have to see how bad it was.

And then finally, the results later that day: bad news.  The cancer was continuing to grow, and spread.  It was around his heart now, and in his lungs.  The doctors were fighting back tears themselves as they told us to take him home and enjoy Christmas together, go on that Make a Wish trip, and do it quickly.

We went home that night and went straight to Molly's school concert, that that same friend had to get her ready for because we were so late after all the delays that day in Rochester.

I could feel the eyes on us at the concert, since so many were praying and waiting for the news too.  But I couldn't tell them, I couldn't see their faces as their spirits were let down, like ours, with the news.  We watched her and left, trying to keep it together, but I remember tripping and falling hard down the back stairs.  We bribed Molly with a Culver's sundae to-go so we didn't have to face anyone at the reception following the program.  We came home, and I took a hot bath, and cried.  And then sat down, posted the awful news, and went to bed.  Feeling like we let everyone down.

We had to make a decision at this point, a year ago.  And it was the hardest one I hope to ever make.  God knows we would have done anything, ANYTHING, to save our Drew.  But it was time to think about Drew, not ourselves. 

Earlier that week,  after a difficult dressing change, a feeding tube replacement, and still sick from chemo, Drew looked up at me in the clinic with the saddest, most heartbreaking look in his eyes.  Without saying a word, I seemed to hear him pleading with me "no more, please".  I tried to cheer him up just after taking selfies with him, but instead I just captured the look that I'll never forget anyway:

After all that he went through, bless his heart, I only saw that look a few times during all of treatment.  But especially this last time, I knew I couldn't see it again.  I couldn't ask any more of him.  I couldn't pack him up and ask him to endure anymore without being convinced it would help.  And we weren't convinced anymore.

Josh and I decided together that week that when it was over (because we understood it was when, not if), that we'd regret what we put him through more than what we didn't try.  We knew that watching him suffer anymore, seeing those sad eyes one more time because we couldn't let go, wouldn't accept "defeat", would cause us more guilt and remorse than wondering if some phase one trial in Texas would have bought us another 3 months.

And so, despite how much we personally wanted to "keep fighting", we stepped back.  We took our hands off, and put Drew into God's.  We scheduled his central line removal, and made no plans to do any more kind of treatment--palliative chemo was declined.  I learned a year ago this month, that sometimes the hardest thing in the world to do, is to do nothing at all.   To sit back and watch, completely out of control...

We knew what it meant.  We hoped and prayed for the miracle like everyone else.  But I felt God preparing us for what was coming.  We knew it was our last days together.  And indeed, we had just over a month left.  In His power, he gave us the strength to say, "we will enjoy this time together.  If there is a day coming to be sad, we will be SO sad, but today, we will choose joy".

 It was our last Christmas as a family of 4, and it was amazing.  Surprise after surprise for our family.  A gift on our step for each 12 days of Christmas.

Of course Santa coming on his sleigh to visit:

High school students coming with more gifts for the kids than we had bought them! 

Gifts from so many in our lives--the babysitter brought them a fish, the oncology receptionists gave him his first combine of the season:

So much joy, so much to be thankful for, and we hadn't even done the Disney trip yet!  Drew was very much himself.  Very much "just" a two year old boy, a  little brother, enjoying Christmas.   I watched it all, took it all in.  Feeling a little like Mother Mary, "Pondering these things in her heart", fighting off the despair, trying not to think about what was coming.  I knew as I watched that this was the Drewy I was going to miss.  Not a Drew hooked up to machines and struggling to breath, I somehow understood how I could let that Drew go...but this Drew.  Oh!  I just wished I could have bottled  him up.  Frozen time.  Snatched him up and ran away somewhere that cancer couldn't find us.  

Through God's strength, we were able to enjoy it, enjoy him, last year.  But now, that day has come for us to be SO sad.  It's like my heart won't be cheated.  It was promised it's time to cry if only it held off so we could enjoy our time together.  And it did.  But this Christmas, he's gone.  It's over.  That Drew of a year ago is not coming back to us.  And we are left with that deep disappointment, that frustration and confusion, that huge sense of loss. 

This year has shown me that grief can't be avoided.  Our feelings won't be ignored forever.  And the longer they are held off, the more they hurt coming out.  Each step of our story this year that I've relived in hindsight, I've had to deal with the emotions that I set aside at the time.  And that was fine, thank God He empowered us to do that!  But now is the time to feel them.  And this season, these feelings, are the hardest.

How am I going to get through this side of Christmas time?  I think I'll just have to feel it.  I'll just have to remember the desperation, the disappointment, the deepest hurt I buried last year and lean in to God as I let them pass.  Rely on Him, who has gotten us this far.

I am beginning to suspect that even if I know all the right things in my head, my heart will probably never truly understand, never be "okay" with what happened.  I'm trying to change my heart's prayer from, "Why?? Convince me this is okay!" to "Give me peace about it".  Lord, let my heart be okay with it just sitting there as it is, ugly, seemingly unfair, and not making sense. Allow me to be able to leave it alone, chalk it up to something I trust I'll understand someday.  Because I think not doing that, trying to convince my heart it's okay Drew died will be a lifetime of work that I'll never finish.  But through the Grace of God, maybe my heart will be able to say, "I'm okay with not knowing why, and it doesn't make sense to me, but I trust it will someday because I know God loves me"

This is why this season is so hard.  Because it's not JUST about Christmas without my little boy, which is hard enough.  I have all this emotional baggage around this holiday, all these emotions associated with this time of year-good, bad, and awful.  But, with many prayers and the strength of God, I know I'll get through it.  Because He's gotten me through so much already.  Row by row ❤