A Different Dream

My son has cerebral palsy.  The child I've dreamed of my whole life may never walk.  My baby who loves the water may never be able to swim.  I've done everything I can possibly do, and it wasn't enough to outrun this diagnosis.

We've known since that first month that cerebral palsy was not only possible, but probable.  After the second MRI in the NICU, my mother and I met with Tristan's neurologist who told us he could be functionally blind, and would probably need a wheelchair.  We learned that essentially half of my son's brain had died, other parts were injured, and we would probably never know exactly what combination of low blood sugar, oxygen deprivation, and poor blood flow changed absolutely everything, forever.

I feel sick, flushed, tearful, trapped, terrified, so many different things when I take the time to sit with this knowledge.  How did this happen???  I had arguably the easiest possible pregnancy, a few weeks of swollen feet, and suddenly I was on bedrest.  Jason and I can pinpoint almost to the minute my hypertension started.  I left work, got in my car, and called him to discuss plans for the weekend.  I couldn't quite think clearly, pausing for words, just not all there.  It was bad enough Jason commented, but teasing.  Neither of us thought much of it, but I felt funky to the point I thought I should check my blood pressure while at my parents' house that night and simply forgot.

I was out of it through my baby shower the next morning, not fully able to connect thoughts and experiences.  We spent some time with Jason's family and once our children went back to their mother's house we finally checked my blood pressure.  My midwife immediately sent us to triage, and within a few hours I was on bedrest with a steroid in my butt to strengthen Tristan's lungs.  I was 32+2.  It never occurred to me to fear for Tristan's future.  I didn't want my child anywhere but in my arms post-birth, but I was in my third trimester!  He was safe!  I was so absolutely certain!!!!!

I ended up spending 12 days in the hospital, and we were successful at getting my blood pressure under control.  I had biweekly stress tests and I aced the last one at 35+5, but when my doctor mentioned doing fetal movement counts I said I'd never felt Tristan that consistently, which I had always attributed to my anterior placenta.  He did an ultrasound and told me "it's time to pull the plug on this baby".  My mother took me home to pack, and I was induced that night.  

All throughout my labor I was laughing, watching Lindsay Lohan's "The Parent Trap" from middle to end, and then beginning to end (or maybe middle?) because it's cute, entertaining, and Jason had never seen it before.  We were certain I'd be able to go without an epidural, and then Tristan started to struggle.

Tristan was born roughly 22 hours after they broke my water, but the whole time I felt so confident my baby was safe.  I didn't want him to go to the NICU, but I just knew he was okay.  I'm grateful I was spared the trauma my husband suffered, watching all the medical efforts to save our tiny son.  I'm eternally grateful for my incredibly attuned doctor, who induced me believing my child weighed over half a pound more than he actually did.  He saved Tristan's life.  How we adore him.

We'll never know when Tristan suffered his brain injury.  We'll never know if we could have done anything to prevent it.  Jason remembers frenzied activity from the professionals who read Tristan's blood sugar results, and my second image of my baby (after the painfully distended, flattened alien view from between my legs) was him wearing a giant oxygen mask.  

We'll never know why, after getting him SO FAR SO HEALTHY, everything completely fell apart.  My records show Tristan was perfectly normal and on track until my hypertension hit in week 32.  Tristan's NICU roommate was born in week 31 and is beautiful, healthy, running around jabbering and giggling and eating whatever she wants.  They're barely 2 weeks apart chronologically, and gestationally Tristan had 5 more weeks to cook.  Everything I've learned anectdotally about intrauterine growth restriction (IUGR), it seems to usually be a problem pretty early on with lots of warning signs and precautions taken.  Yet here we are.

I'm so grateful for that sweet girl and her parents, and my comparison isn't in any way to say "it's not fair!  They should've had these problems!"  But medically....my baby just doesn't make sense.  At most he should have needed a few weeks to get fat.  Instead part of me feels we never have, and never will never leave the NICU.  The rest of our lives are, most likely, doomed to physical therapy, occupational therapy, and appointments with specialists of all sorts.  

As Tristan grows, it is likely every vehicle purchase and move will center around how we can best meet his needs.  Every time we evaluate the future, what we'll drive, where we live, we hit a brick wall.  We have no idea if we can have a home with multiple levels, because we refuse to live anywhere Tristan cannot access every area.  We don't know if we'll need a wheelchair-accessible van, because it seems we are fighting like hell every second of every day to make sure our little boy crawls and walks and runs and jumps and does absolutely every single (use to seem) tiny thing we always imagined he would.

I'm so afraid.  All the time.  It's always there.  I have been so blessed that most of the time I am able to maintain perspective.  Even after the diagnosis was made official, I texted Jason, picked him up from work for a quick lunch, and drove to Tristan's next appointment.  On the way I called my parents, and I don't even know how many times I choked without getting a single syllable out before I finally told them the hammer had dropped.  That's the thing about hope.  You cling to it, until the very.  Last.  Second.

I'm so angry.  I'm so sad.  If I'm not attentive, I feel bitter and betrayed.  Jason and I have worked so hard.  We have come so far.  We did everything right to build our family on the strongest foundation possible.  He especially walked through fire to be my husband and Tristan's daddy.  He has lost so much time with our older children, for absolutely no reason.  And now we may lose so many things we dreamed we would finally have because we finally figured it all out.

When I'm rational, faithful, level-headed, I recognize all the reasons we thought we'd caught a break are exactly why Tristan had to be ours.  This beautiful little angel boy needed a family that would move heaven and earth to give him the best future humanly possible.  We have done and will continue to do that, whatever may come.  It's 4:43AM and I'm at work (and have been for the last 10 hours) because I will never let anyone but me and my husband raise my child.  I won't allow him to grow up without a strong, constant relationship with his father and older siblings.  I will sacrifice my sleep to pay off ridiculous legal bills and prevent him from losing any more time with his daddy than is absolutely necessary.

Jason and I have had a lot of hard conversations since Tristan was born, trying to picture and prepare for the future.  It feels insurmountably intimidating.  Both of our families love the outdoors.  We love to hike, boat, swim, camp, take off on grand adventures.  I don't know how we do all those incredible things if our worst fears come to pass.  But I told Jason the other night, if there is anything in this world that I know he and I do well, it is loving our children.  We fight for them.  We never back down.  We do whatever it takes, for all of them, to know they are so amazing and wonderful and powerful and capable and cherished beyond all description.

So.  Here we are, broken, but never beaten.  We never stop working.  We never stop fighting.  One day I know, the time will come we'll stop crying.  If this is what it takes for this precious, perfect soul to be mine, it's worth it all.  Right now, in this moment, with so many fears and so few promises for what this mortal life holds, it is worth it.  Because all day, every day, for the rest of eternity, all this cheese is alllllllllllllllllllllllll mine.

The future is long, and hard, and almost all uphill.

But this beautiful baby of mine?

He's better than every unspoken dream.

And he is mine.

Forever.