Times, Seasons, & Opposition in All Things

It's been a complicated past several weeks.  Lots of messy, human, selfish emotions.  My sister & her husband welcomed their first baby.  We were exactly the same gestation for our baby showers.  I can barely remember mine.  My blood pressure was raging & my brain was shutting down.  We did everything humanly possible to keep Tristan in, and fortunately my little sobrinha was too impatient to wait.  Born at 33+1, she outweighed Tristan, born at exactly 36 weeks, by over a pound.  Born 20 days earlier, she went home on her 17th day while Tristan spent 36 days in the NICU.  Some days it's seemed like we will never leave, like we never did, because everything that happened there has shaped nearly every second of every day since.

I share this recognizing these are such icky things to feel.  I share them hoping the others out there I know struggle with envy, grief, wishing they'd experienced similar miracles will know, you're not alone.  You're not a bad person.  You're in pain.  I am grateful beyond words for my niece's health, her miraculously swift transition from the hospital.  It's just that I wish we could have had that too.  I wish the expectations I had after working so hard to keep my son safe inside of me, knowing we got him so far, had unfolded the way everyone had every medical reason to believe they would.

I feel so many things, so much of the time.  Fear, joy, love, anger, confusion.  Most of the time they seem to settle far below the surface.  I'm grateful for that.  The early months and years, I felt so raw.  Now, I often find myself able to just accept that as my current reality.  But see, something happened last night.  Something I've pleaded for, choking the words out through streaming tears and gulping sobs more times than I can (or would ever want to) count.  Something that, again, no one had any medical reason to believe would ever happen.

I don't know if it's true for everyone, but for me and some of my friends who have been through similar situations, some moments, some words almost seem to haunt you.  Functionally blind.  Wheelchair.  Dead.  How do I tell people so calmly that more than half of my child's brain died before he was even a month old?  That my friends is compartmentalization, pure survival at its finest.

I have the privilege of supervising some absolutely incredible individuals as a counselor.  Something I discuss with them, frequently, is the question of how much information hurts versus helps.  As a mental health professional AND the mommy of one of the most special humans to ever grace this planet, I feel entrusted with trying to make the uphill path through this life with so many moments that seem to resemble the deepest levels of hell somehow.....less.

My son has been cared for by so many incredible individuals.  I would never entrust him to someone who doubted him, not for a second.  But somehow there seems to be this belief in the need for "reasonable expectations".  How that phrase fills me with fury sometimes.  My supervisees and I discuss the vital distinction between "your mental health may always require proactivity" and "this diagnosis means you will never live a healthy, stable life".  Somehow I've been blessed to avoid this experience in comparison to many, but I've found for some reason so many professionals feel it important to share their experience in a way I often see only do tremendous harm.

My son's neurologist was as wonderful in this delicate balance as I believe anyone could be.  He had to share with my mother and I truly horrific information.  There's no way to share that numerous cells throughout your tiny child's brain have died, without causing life-altering agony.  That's a ridiculous, unreasonable expectation.  He was honest about what experience, statistics, location in the brain predicted Tristan's life would entail.  But he also gave us the hope to which we have desperately clung these last (almost) 4 years.  While no one could predict the impact of our efforts, whatever impact we could have on his future would be determined by the intensity with which we attacked this challenge with intensive interventions.

I was so determined I was actually angry we left the NICU with phone numbers instead of appointments for his weekly therapies.  Tristan's first outpatient physical therapy appointment took place 3 days later, and for months after he had appointments nearly every day, often more than 1 or even 2.  So many his neurologist was later "impressed" and stated we were "doing everything", without realizing the record he reviewed didn't even include the weekly aquatic occupational therapy delivered outside of the St. Luke's system.

Tristan took his first step March 2nd, but it was only last week that he took a single step more than once in an entire night.  I experienced a lot of fear, worry, and heartache all those months since with no apparent interest from my son in a repeat, let alone more.  July 25th Tristan took 3 steps, his first consecutive set.  July 27th just before midnight his daddy and I were absolutely stunned to see him double his record to 6.  Today I witnessed him take 8 steps through our kitchen, and repeat his previously impressive 6 multiple times.

At last.  I see the light.  I've told a few people today.  It's as if I'm breathing for the very first time in almost 4 years.  And yet my chest doesn't seem to remember how to expand the way I need.  I couldn't look up.  I couldn't slow down.  I couldn't acknowledge for more than the briefest second how terrified I was that this day might never come.  That my son might never, even for the shorter time possible, ever walk.  I couldn't acknowledge doubt or fear, because it seemed the entire world was waiting for me to join the chorus.  And if I did, everything I ever wanted for my child would be lost.  I can't begin to describe it, this constant awareness of an anvil hanging over my child, the knowledge that everything I could possibly do to keep it from crushing him, crushing my dreams for him, might all come to nothing.

I know.  I know 6, or even 8 steps don't mean Tristan's cerebral palsy is gone.  It doesn't mean he will ever live independently.  It doesn't mean he will ever ace algebra, win state at football, get a black belt, master French, drive, get married, raise children.  But it means all those things suddenly feel a little bit more possible.  It means my refusal to ever believe he couldn't get there was more than a desperate avoidance of a reality that seemed waiting to destroy me.  It means my baby is every bit the miracle I have always steadfastly believed him to be, at least a little bit in the way I always prayed he would be.  

And that?  I can ride that for a lifetime.  I will never give up.  And the most beautiful part?  Neither will my son.  He doesn't know how.  And that?  That is more than a little bit because of me.  Wow.  How my soul sings today.  How grateful I am for never allowing myself to lose faith.  How grateful I am today to be me.  I can scarcely remember the person I was before that day.  I am the mother of Tristan Steadman Payne.  I am exactly who he needs.  Everything I have done, everything I have fought to enable my son to become, everything I have chosen to believe.  Today I will say it.  I am amazing.