Faith and Hope

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.

Spencer Sunshine

Spencer is such a funny guy at this age - he is changing so quickly, it's sometimes hard to keep up. He makes us laugh and smile all the time - whether it is busting a manic dance full of jumps, running and spinning or turning our legs and a random box into an obstacle course. He is so much fun and he is quickly telling us all about the world around him - saying "stroller walk" and insisting we go for a walk. "Mow outside" is another phrase we hear a lot. Tugging on his bib saying "done, down" then throwing his hands up in the air and saying again "all done" when we don't immediately let him off the hook at dinner...the list goes on. He is incredibly smart, clever and funny.

Today, every time he saw me he wanted to hug my leg. I'm not talking about a lazy, drive by hug ... I'm talking full throttle, beaming tooth-showing smile with bright eyes looking up at me saying "mom." I feel so blessed to have such a sweet, sweet little man.

Right now I am a little obsessed with Christmas present planning for Spencer. We'd like to buy him a piece of outdoor play equipment that he could play with inside in the winter. He loves climbing and he is quickly getting bored with all his indoor toys, turning our lamp into a stripper pole and the stairs into a jungle gym. No good. Any ideas on what brand/specific piece of equipment to buy from the moms and dads who might read this blog?

These two are my top contenders right now:

Step2 Panda Climber

Step2 All Star Sports Climber

Beautiful, Fleeting Life

It is a little too easy to get bogged down in the day-to-day grind, but I've learned anything during my time as a parent is to focus on the present -- as hard as that may be sometimes-- block out the noise and enjoy every magical moment. Cherish it. Chew it up, digest it and let it radiate throughout your body, making a permanent mark in your memory. That is life - the moments. The relationships. The experiences.

Sometimes I feel like that guy in American Beauty ... the world if full of beauty. Sometimes I feel like it is so beautiful that I will become consumed by it. It isn't a bad thing - it's actually a great thing, but it's a different type of overwhelmed. For me, it's the type of feeling that makes me want to cling to the moment ... never let it go. It makes me feel a sense of inevitability ... like I am enjoying the moment so much I am absolutely petrified it will disappear and I will never experience that joy again.

I know, inside my head can be a little intense.

Things I love and never want to forget:

the sound of Spencer's giggle - sometimes spontaneously erupting from him at the most unexpected times, like in the car on the way home from school

Brandon reading the "don't tickle the duck" book out loud to Spencer

the feeling of a hug with a friend or loved one after being apart a little too long

my snuggly baby, rocking, dancing, holding each other close

the pride of seeing your child learn something new ... small or large

the feeling of peace and safety sleeping next to my husband

the concentration on Spencer's face when he is coloring or building blocks and the exuberant "I found it" or "I got it" he exclaims after completing a task

the sound of the ocean

the feeling of the warm Hawaiian breeze blowing through my hair driving with the top down

the cottage in Kona where Brandon and I spent one of our best vacations

the pride of finishing a backpacking trip and the satisfying ache of my muscles afterward

the importance of great girlfriends in helping you navigate life's often tricky waters

my grandpa's blue eyes and the smell of his truck

my grandma's laugh and family parties

I could go on and on and on.

Life is beautiful. Screw the ugly stuff, it's not important. Living life is important.

Extraordinary Unpredictability

Nights like tonight are always filled with an odd mix of anxiety, restlessness and a feeling of both sheer adrenaline and exhaustion. It's a strange sensation ... like you are at the cusp of something monumental and inevitable. For me, it fills me with intense tension - I'm ready to spring, barrelling everyone in my path out of the way, holding fiercely two my little nuclear family as I propel us toward the finish line ... to the end of yet another procedure safely and without scary eventfulness.

I never imagined going through what we've gone through in the past two years. Its unfathomable to think about handing your precious child over to a team of anesthesiologists, nurses and doctors just one time - let alone eight. Tomorrow will be the ninth time Spencer goes under anesthesia ...

It amazes me that so many people have "normal" pregnancies. So many of my friends have had unexpected things happen in their journeys to become pregnant ... several had trouble conceiving, another was diagnosed with a serious personal health condition, another's child had major surgery, another had preclampsia and yet another was gestational.

Life is unpredictable, unfair and unexpected I guess. Fortunately, we've all come out the other end OK. Definitely a little pockmarked, bruised and perhaps a little wiser or more cynical ... but surviving and thriving, damn it.

Nutzo

I've decided working around science and medicine is both good and bad for my health.

It is amazing to me how my attitudes toward medical care as well as personal lifestyle choices have been altered during my six years in health PR. In a way, I miss my naivety ...now I worry about everything! Lead paint chipping turning to dust, triclosan and pesticides in hidden places, aneurysms, cancer, the list goes on!

That's my random thought of the day. Is it the weekend yet?

Mango Flavored Baby Kisses Are Even Sweeter

... ok, I guess Spencer isn't technically a baby any more, but he'll always be my baby. Tonight - after playing Lady and the Tramp with a spoon on mango sorbet (me with a two-sided plastic spoon between my teeth and Spencer eating off the other end), I got an impromptu, mango-slobber kiss.

Ah, these are the memories I never want to forget: Spencer, sitting on our living room smiling like he didn't have a care in the world, enjoying some a delicious Saturday night treat of mango sorbet.

It's easy to get wrapped up in all the hard stuff -- the ifs, the questions, the day-to-day obstacles, future fears. What is important is embracing the moments in front of you. I admittedly have periods of great success doing this and many other erratic periods of epic failure on this front. It's a flaw, I'm working on it.

After a meltdown on Friday (my most common meltdown day) during Spencer's dinner, the day after his second esophagus dilatation, we ended up having impromptu playtime in the backyard sprinkler while Brandon was watering the grass. It was so fun watching Spencer explore the sprinkler. I found myself startled by my own genuine laughter and smiles. It feels good to smile, to laugh, to truly be enjoying the moment without effort. If could bottle that feeling, I'd become a millionaire selling it.

Chatty, Dancing Man

Spencer is turning into quite the dancer ... not only does he do his patented fast riverdance/maniac run, he now has added a spin move. Spinning is very funny for everyone involved, including Spencer!

Spencer has also really begun to chatter with intention - the words aren't perfect, but he says mom, dad, this, dog, cat, out, drawer, bottle, treat, bird and some other things that we sometimes recognize. He is also a super helper. He helps us load the dishwasher, put clothes away and put things in the trash. What a superstar!

This weekend Spencer and I enjoyed our first play date with Hazel, Paula, Brayden and Sara. The little babies were absolutely fascinated with each other. Spencer was like " hmmm" boring, but enjoyed trying to touch them. He also gave Hazel a hug and a kiss the night before when we babysat her and rocked Brayden in his car seat. My big boy! Wasn't he just that small?