I've decided I have a problem with faith.
It's amazing how a life experience can rock your fundamental being. For me, that life altering experience was having Spencer, my little beacon of sunshine but also the source of my shift from Pollyanna Sunshine to Pissy Petunia.
I know most my sense of anger comes from fear, frustration and lack of control as well as a bit healthy dose of "why me?" What I am learning to change, however, is how those self-destructive feelings can be stopped. For a long time, I let them completely consume me ... eat at me, like an insidious bacteria starting at my core and spewing out through my every pore before I realized it was even there.
Some days, that still happens. And some days, I let myself feel angry and say something nasty or cry because it feels good to have a release. But I'm trying really, really hard to put that nasty Pissy Petunia back in her closet when she starts spewing.
Tonight she reared her head during Spencer's dinner. I could feel her sharp claws scraping at my insides planting thoughts of "Will he ever eat 'normal food? How much longer can I put on this dogged effort to get him to eat enough food to grow and be healthy ... if it weren't for that darned constipation issue it wouldn't be that big of deal. Who am I kidding? Of course it would - he has to eat GD-purees, for goodness sake. I just want to be able to give him a bite of my effing macaroni, which he is looking at so longingly right now."
Sigh. Breathe. Get a Grip.
Spencer smiles, eagerly reaches for Brandon's guitar as he is playing, smirking when he feels the cord vibrations. "Done, down" ... he is pulling on his bib and gesturing comically at me like: "Hello, mom. Are you listening?"
Ok. But just one more bite, pleaeease. No, it ain't happening.
I throw in the towel and try to pat myself on the back for being persistent and getting him to eat something other than milk. But it hardly ever feels good enough. That's probably the super-sized guilt I like to carry around about everything, large or small.
So, I let him down to watch Dad play the guitar and excuse myself from the room to get a grip. I soon hear "moooom" from the base of the stairs. I come down and am greeted with an exuberant leg hug and beaming, tooth-bearing smile. I return the hug, who can resist? When I sit down, Spencer bounds into my lap as if I had been gone two weeks not two minutes.
Ah, I want to have faith. I want to believe that his future is boundless, full and happy. It scares the absolute shit out of me to picture it any other way. Because dang it my kid is amazing. AMAZING. Resilient, happy, smart and oh so precious to us.
I can't explain how incredibly unfair it feels that he been given the challenges he has, the obstacles he's already overcome in his short 20 months of life. I also can't explain how completely broken, vulnerable and helpless this situation has made me feel at times. I feel like I have failed him in some way, though I know that isn't true. It's just easier to blame myself that accept that this is just what happened to him, to me, to us.
It will never be OK that Spencer has the medical diagnosis he has, but I'm determined to live with it in a way that shows him it's OK to be him. In fact, it's better than OK to be him because he is Super Spencer. I haven't met another kid I liked better and I'm sure I never will. :)
So, faith is hard for me. And faith gives people hope. The reality is faith is easy to have when things are going well and nothing bad happens to you or those you love. It's when times are hard that faith is bruised and battered.
