The Night Before

Today was good.  We went for several walks outside and around the oncology unit.  We played and interacted with other patients and their families that we've gotten to know.  We watched Netflix and the Cubs game while Ari was napping.  We've babbled back and forth with Ari.  We've changed Ari's dressing for his central line.  We've given him his first sage bath in preparation for surgery.  And, we've sat many times anxious for what tomorrow means.  Ari is scheduled to go into surgery at 12:10 p.m. to remove the newly visible nodules and drain the fluid from the left side of his brain.  We are frightened beyond what we can sensibly comprehend.  Our frame of reference for this type of surgery comes from his surgery that took place on February 27th of this year to remove the original tumor.  That was the day that our son began his journey to regain all that had been lost neurologically.  That was the day we began this journey to battle this awful beast that is represented by four letters, AT/RT.  That was also the day we learned of the strength our son possesses. Our little guy has been through status epilepticus, multiple brain surgeries, eating difficulties, and intractable vomiting from chemotherapy.  Yet, tonight, he babbles "momma" and "dada" while rolling from side to side and mimicking his squeaky giraffe toy.  He smiles.  He crinkles up his nose as we tickle his belly and squeals.  It is so good.

Honestly, I fear losing those things.  I feel we have our son back.  I feel like he fully recognizes Jenny and I as mom and dad again, and I want that to stay.  My fear can be crippling sometimes, and I'm not exactly sure how to deal with it in times like these.  My mind keeps jumping back to the verse in Philippians that I've posted here before, instructing us to be anxious for nothing but in every situation, by prayer and petition, to submit our requests to God.  I want so badly for that verse to answer this fear directly.  I want it to somehow wash away everything that I feel.  But, honestly, I think I truly want it to take away all that is happening to our son.  As I was meaninglessly perusing YouTube today listening to music videos, I stumbled upon a song from John Mark McMillan's latest album.  Here are the first couple of lines to the song.

You hold the reins on the sun and the moon

Like horses driven by kings

You cover the mountains, the valleys below

With breadth of your mighty wings

I just kept replaying this part.  And, I cried.  I sat there in front of my computer with tears.  It wasn't because this is a sad song, but that was it.  The same God that the passage in Philippians was instructing to submit our requests to is the same God that holds the reins on the sun and moon.  Wait, what?  He's that big.  He's that powerful.  He cares for us that much.  I wanted comfort to come in the form of understanding and knowledge, but comfort came in the form of a re-realization that God is mighty and cares for us.  He cares for Ari.  Quite frankly, more than I do (which I don't really understand).  He knit Ari together in Jenny's womb and breathed life into his lungs.  

I'm comforted by this truth tonight.  Does that completely wipe away my anxiety or the thoughts of my son going in for a 6-hour brain surgery tomorrow?  Simply put, no.  But, I know that this is the door we must walk through tomorrow at 12:10.  Luckily, we continue to be accompanied by a God that loves our son, and us, more than what our minds and hearts can comprehend.  We invite you to continue to journey with us through this season.  Your continued thoughts and prayers for our family are felt and much appreciated.  We will try to post updates when Ari gets out of surgery.  We love you all.