So Complicated

Thursday, May 18, 2023

Lying here in bed wishing I could enjoy this rare free time because wow, I desperately need a nap.  But instead I'm crying.  The last entry I made referenced an incredible opportunity I had discovered for Tristan which is now just over halfway through.  We have weathered the storm well so far, despite many intimidating obstacles including one we never imagined.  But I dread tomorrow & the week ahead without Jason.  Tristan adores his daddy, & it's very hard for him to be apart.

We are in Orem, Utah at the Now I Can Foundation.  They offer 3-week physical therapy intensives, 4 hours a day every weekday.  Finding an opportunity like this so close to home, let alone that it exists anywhere, is absolutely miraculous.  We are seeing Tristan's physical and emotional confidence grow before our eyes.  We have the support necessary to make this work.  Even the loss of my grandmother, our planned backup for week 1, knocked us down but not out due to my mother's loving support.  Juggling work has been challenging but manageable for me and for Jason.  Being apart has been brutal, especially for Tristan, and with a full week of separation ahead I'm praying his great-grandma stays closer than ever to our sweet little boy.

Adjusting to early mornings has had some bumps, as Tristan & I are not morning people.  This morning he was up over a half hour earlier than necessary, but he's working so hard he wants food all night long so Jason & I were exhausted.  We laid down to take a nap, and I started to think of what I might miss seeing on the amazing cameras they have to support parental interest without the distraction of being present.  I thought of my stated goal of at least getting a few independent steps before we go home.  I realized like so many other firsts that have been stolen from me, my child's first steps will most likely happen without my presence or even my witness.  And I felt sick.  And I felt shattered.  And I cried.

Friday, May 19, 2023

My husband is gone.  And I feel broken.  In a half hour I go to check in with Tristan, feed him, change him, & spend a half hour dodging the question "Daddy?"  But it won't end with that half hour.  If I'm lucky, he'll transition into the rest of his session calmly.  But this week every time Jason has stood up, gone to the bathroom, left the room, Tristan has called for him.  He adores his daddy.  And I'm so grateful.  I chose him so very carefully.  But right now it's just too much, & there's a long weekend ahead with no one nearby to tag in.

I miss my bed.  I miss my other children.  I hate being put in the position of choosing.  I hate that I can't do and be absolutely everything for everyone every second of every day.  I hate that this feels so heavy.  I hate that I can't just be grateful and power through.  I hate Hate HATE that I was already afraid of this experience, how massive it would be, and then my grandmother is taken too???  As far as kicks while you're down go, WOW.  I hate that I'm so afraid to return home and start to figure out normal without her.

I hate that what I want most from these three weeks, a cure for my son's cerebral palsy, his brain injury, his many challenges, is impossible.  Every day is a struggle between feeling thrilled and disappointed.  He is working so hard.  As per usual, everyone loves his huge smile and wonderful attitude.  He has them all trained to sing "DuckTales, woo-oo!" with him over and over and over again.  And yet I have to constantly fight this belief that all of his efforts, all of mine, will never be enough.  And manage the knowledge that for what I want more than anything in this world, that is true.  Nothing I could ever do will be enough.  Ever.  Not for what I want.  And fighting back that feeling of defeat is just....too much alone sometimes.

Please understand, I've had numerous moments of tremendous gratitude.  No problems with work.  No one getting sick.  Our accommodations being absolutely incredible.  No car trouble.  Jason taking Tristan so I could visit my cousin & have her do my hair for the first time since before we got married.  Jason driving an hour with Tristan each way so we could have dinner with my cousin & 2 of her children.  My mother uprooting her life to fill in for my grandma, knowing she'd be doing it all over again a week later.  Getting so much time with my surviving grandparents and other family.  Tristan's confidence and skill with his gait trainer improving.  The gorgeous mountain views outside the facility.  Tristan transitioning beautifully into treatment independently with only one hard time out of the seventeen we've done so far.  So many good things.  But sometimes, it's not a question of quantity or comparison.  Sometimes one thing just overwhelms all the others for awhile.

I know the instinct to offer comfort is strong, and I'm grateful so many people care.  Please, don't say you know how I feel.  Please can we just remove that phrase from our vocabulary as a society.  I saw someone say it recently to a college friend who has lost multiple children, has surviving children with lifelong challenges, and is in the NICU again with another child.  You know how that person feels???  Is your well-meaning self absolutely INSANE?????  No.  Just put it away.  "I love you.  I'm praying for you AND I'll keep checking in on you because I don't want you to forget".  Those are the kinds of things that convey the same love intended, but don't presume to have any idea of the grief and struggle the person may be in.

My cousin and I got to talk a lot about how people can fall into a tendency of assuming we do hard things (hers are very different from mine) because we are some special breed of person who can handle that struggle.  We're unique.  We're different.  Yes, we are.  But not because we somehow have the fortitude to do what we are doing.  Because we are doing it anyway.  Because we aren't giving up.  Not because we feel we have a choice.  There are many, many hard things in this world we all do.  Sometimes we make a hard choice only because the alternative is even harder.  That's technically a choice, but it's still very easy to feel powerless.

So for now, please, rather than any "this too shall pass" junk, please just cheer for my son.  Cheer for me.  Love us.  Whether we're down as low as it seems we can go, or riding a fabulous high.  This hard will ebb and flow and have good days and bad, or even hours.  It won't pass.  It will evolve.  And we will evolve with it.  And sometimes that means we're the caterpillar in the big gooey melting mess.  Love us anyway.  Let us weep.  Let us know that's safe.  That's what we need.  Please.

This entry evolved from grief over a fear my son's first steps will be with virtual strangers and I'll miss it all, to the bigger overarching grief that this is hard.  So hard.  So tired, all the time.  So sick of everything being so complicated, so bittersweet, so messy.  I expected more pauses in all the hard.  The cycling is a lot more rapid than I think I can handle.  But we keep going.  And no hard on this earth would make me trade this kid.  But boy, I hope I can get a nap before he's done for the week.  This mommy needs some rest.