Reasonably Expecting Miracles

One of my children made a common observation recently as we watched the messages shared by the general authorities of the Church of Jesus Christ of Latter-Day Saints.  He noted how you never hear about the stories when miracles weren't granted, when brain tumors didn't disappear, organs didn't inexplicably repair, and agonizing symptoms didn't end.  Last weekend that was not the case, & my heart was so grateful.  We heard from a son whose father was not saved, someone who lost 3 loved ones to COVID, and a man whose cancer treatments have tragically shortened his life.  Yes, God can work wonders.  I know that is true.  I have seen it in the life & the heart of my precious niece Emery.  He continues to help her heart to heal itself, pushing a dreaded surgery farther & farther down the road.  I know, I know those miracles come.

Today was an even busier day than usual, with chiropractic adjustments for both me & Tristan followed by swim therapy and the gastroenterologist.  I was driving & for some reason thought about some heartbreaking things I read about a collision which made me over an hour late to pick up one of my kids, but more importantly resulted in the death of a young father.  I won't share them here because they aren't images I think anyone needs in their head.  They prompted some horrific thoughts, & then a miracle.  I had a flash of my precious, perfect son as an eternal being.  Running playfully, a loving smirk, this sense of "c'mon Mom.  You know I'm okay.  You've always known".  It was so powerful, I can't begin to explain it.  I cried, then and now.

My son is 25 months old today.  He is 0.9 ounces shy of 21 pounds, which has been incredibly stressful but we made a massive shift in perspective today.  We have been battling to get Tristan nice and fat because of various factors which weren't being considered.  When his cerebral palsy is taken into account, Tristan is in the 60th percentile for height and 25th percentile for weight!  Adjusting for how CP impacts his body's need for fuel, Tristan is, admittedly, at the bottom of where science says he needs to be with eating BUT it is clear he is listening to his body and progressing beautifully!

We have been working towards a very specific outcome for almost two years.  Tristan's neurologist, after breaking our hearts with the news of how severe his brain injury was and the many challenges Tristan was likely to face, told us reciprocal crawling was the biggest indicator of walking.  Last week his physical medicine doctor said the biggest indicator is getting to sitting independently and he "smashed that one out of the park!"  So we're not super clear on what predicts the future, if only because, well, we've learned that nothing really can.

After seeing Tristan's physical medicine doctor, I reached out to Tristan's physical therapist about an assessment the doctor had mentioned.  Among other things, she said it helped with "reasonable expectations".  Somehow that phrase just...irked the heck out of me.  Tristan works with an incredible team who absolutely believe in him, so that isn't to say I'm upset with her.  I just decided from the very beginning that no one, no professional, no book, no well-meaning loved one would ever tell me or my son what he could become.

I've struggled the past few days with figuring out what to say on this subject, how to say it.  I hoped for so long my son would be one of those straight-up miracles, his brain perfectly healed, his body mastering rolling and crawling and walking and running and jumping and learning as if everything in his life had gone perfectly right instead of horribly awry.  And as it hasn't, in some ways my heart has broken so many times I can't count.  But my son's life is made up of hundreds of little miracles, and massive ones.  Tristan is a miracle.

I told my boys that in my eyes, their baby brother is every bit one of those miracles we pray for and often struggle to recognize until after they've come.  The joy I feel every time Tristan signs or laughs or repeats a new word, as much as I ached to be a mother before I had this beautiful child, I can't fathom that joy could possibly have been so profound without the devastating grief.  Tristan is speaking so well we're expecting him to graduate speech therapy in February.  He is rapidly closing in on the average expectation of 50 words!

And this?  When I witnessed this?  It felt so profound, so obvious, so absolutely certain, so miraculously hard-won, there could be no doubt.  I always knew, but felt terrified to hope, but could never stop hoping and working and (mostly silently) praying because even saying the words out loud feels, and sometimes literally is impossible.  This miracle is so much more than the one prayed for over a few hours or days.  These miracles, the ones that only come after crawling, bloody and broken and begging, the hand up after hope seems lost.....  Well.  Those aren't words I've found yet.  If they even exist.

In the beautiful image of Yongsung Kim and words of Kenneth Cope:

He is always here.