Fragility

I’m not the praying type, but I find myself desperately pleading with God these days.

I am so scared all the time, sometimes that fear comes out as anger, other times uncontainable crying. I start to let myself be happy, feel solid then something cracks the fascade, revealing the reality below: A 33-year-old woman who feels a bit broken, like a wound that won’t heal because she is absolutely petrified she will lose her son. My amazingly funny, smart and energetic little man, almost two and ready to conquer the world … just if his body will keep up.

The unknown is what is so hard. Right now, the big unknown is how well his kidney is functioning. We had testing done earlier this month and now his urologist is out of the country, unavailable to give us answers, until after Christmas. In the meantime I called to see if the nurses could tell me anything … the only thing they could tell me is that our urologist wants us to get a urinalysis and have further evaluation with a different nephrologist than we typically see.

Waiting, waiting, waiting. Getting as many hugs and kisses as I can get, showing him all the love I can muster and praying desperately for him to not be taken away from us prematurely.

I am trying so very hard to accept the things I cannot change, have the courage to change those I cannot and the wisdom to know the difference, all while keeping my anger at bay. But sometimes it is a minute-by-minute battle.

Skipping

Spencer has graduated from mere walking and running to skipping -- and he thinks it is absolutely hilarious. He sings "skip, skip" as he does it. He is learning so much every day, I have to stop and really listen and watch to absorb it all.

His imaginary play is soaring. He loves cooking at his new kitchen (pouring spices into his dishes, serving up coffee to Brandon and I, etc.) and he will rock a baby doll and give it a bottle. Last night, we were playing with play doh and he made a circle then turned in a circle to further illustrate. Today we were at a lunch and he suddenly wanted me to know that he was my baby, grabbing my arm forcefully with a beaming smile and hugging close saying "i your baby" -- again and again.

Ah, bliss.

Joy!

So fun! Spencer is so fun, despite his masterful toddler tantrums.

Tonight,we boogied to the "chew, chew, chew" song I made up for dinner time, played ring-a-round the rosey, row-row-row your boat until you tip ... capped off with big pucker-up kisses for both Mom and Dad before sweet little man snuggled up for bed.

Ah, joy.

Being “Inspirational”

A friend said something to me last night that took me back a little. He told me that Brandon and I were inspirational. As our friend said this to me, I was looking down at my son – hugging my legs, laughing and giving me a big toothy smile and I thought: Spencer makes this a lot easier to deal with because he is such a beacon of light and good in our lives.

I’ve always wondered if our friends thought we were a little crazy (because we can be) or neurotic (that’s a given) but I’ve never thought of us as inspirational. To me, it’s our son that is the superstar … how many of us could be as resilient as he in the face of so many challenges … again and again? We are the parents just doing what has to be done - making the hard decisions, worrying and fretting, tricking our son into eating, crossing our medical Ts and Is.

“Parenthood” has definitely been an unexpected journey. One thing has become clear to me: Nothing is guaranteed. Life is unpredictable in both a painful and beautiful way. I’m learning to embrace this, despite my “good/bad, fair/unfair” way of thinking. It is a very, very hard thing to come to terms with.

I read an essay in the New York Times today that really resounded with me. Clearly, this family is facing something very different than Brandon and me. But the idea of a dragon parent makes so much sense to me – fierce, loyal, ready to jump at any minute to protect, love and comfort our“young.”

Read the article, but only if you want to cry and re-evaluate your own perspective on life. Either way, I expect everyone to begin to referring to me as dragon mama from now on; B would prefer dragon dad.

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.