SANTA FAIL

The thin line between providing our children happiness and spoiling them rotten is a tightrope that I think all parents stumble across. For me, this has become a difficult task when I am consumed with overwhelming desire to never have Ryan face anything remotely disappointing ever again, after all that he has been through. But it seems I should give him more credit. Just the other day he proved to be amazingly hopeful in the face of disappointment.

We were in the car headed to my sister's house for my niece's 3rd birthday just this past Friday.  Rowan was asleep within minutes as the hypnotic engine played her favorite lullaby. Ryan played with a toy and hummed happily. I was fighting off a headache (the start of my current cold as it turns out), trying to concentrate on the road as the commercial noise on the radio softly buzzed in the background. Then from the back seat I heard a sweet little voice.

"I had so much fun the other day opening presents!" he chimed so cheerily, kicking his feet rhythmically against the back of the front seat.

"Oh, you mean on Christmas?" I clarified more than asked.

"Oh yeah, yeah, yeah... on Christmas, " he corrected. "That was so much fun!"

"Yes, it was a very special day and Santa was so very nice to bring us so many wonderful gifts." I tried to continue on, mentioning something about how just being together was gift enough but I was abruptly interrupted by the saddest sound ever.

"Yeah, it was so nice, even if Santa did forget to bring me the super duper Lightning McQueen race car thingy that I really, really wanted."

My heart sank. I had dreaded this moment but I thought it was going to happen on Christmas day, not nearly a week later. You see, for the past month we ran into Santa several times at a variety of venues. And each and every time when Santa asked what he wanted, he would instantly reply with the same exact answer: A Super Duper Lightning McQueen Race Car Thingy. He sounded so much like the kid in A Christmas Story, the same enthusiasm and quick tongued matter-of-fact manner that it made me giggle every time.

Believe me, I tried to figure out what in the world that was. I asked other moms and relatives if they could decipher the foreign language of my child. I only got the same deer-in-headlights look I'm sure I displayed the first time I heard him say it, followed by looks of pity and the unhelpful tidbits of "Well, you'd better figure it out soon." I looked through sale ads asking him to point it out to me. That proved to be too overwhelming for him because he ended up pointing to each and every awesome toy in the ad that he wanted Santa to bring for him. But none were the Super Duper gift he so coveted. I asked him to describe it for me to which he responded with a "You know mom, the super duper one." Riiiiight. How silly of me. I scavenged the aisles of several stores, even daring to ask a pimply seasonal worker if he knew what it was to which I got a blank stare which turned into a suspicious look as if I were playing some kind of a hidden camera joke on him. I even typed it into Google hoping maybe it would miraculously show me the item I sought instead of the 1,240,000 useless results. I was even desperate enough to ask my cryptic four year old to draw me a picture of it. "Mom. You know." was all I got. Apparently I have impressed my children so much with my incredible mind reading skills that they automatically assume my powers transcend the Santa-Parent barrier.

I ended up buying a few items that I thought perhaps were cool enough to qualify as super duper though in my heart I feared the worst. I even held out hope that our foundation Santas had hidden the prize amongst the generous piles of wrapped gifts. (The presents were ALL so very wonderful, by the way! Thank you Secret Santas!)

"Wha?" I stammered reaching for the radio knob to shut off the noise. "You didn't... Santa didn't..." I was so glad he could not see my horrified face.

"Santa must've forgot to bring the super duper Lightning McQueen race car thingy I asked for." He then let out a huge sigh of disappointment and my heart broke. "That's okay. I guess the elves just didn't know how to make it." he concluded. I imagine he was shaking his hanging head.

"Ohhhh. Can you tell me about it please? What does it look like? I'm just so sad about this." I pried for more info.

"Oh no Mom," he reassured, "Don't feel sad about it. It's not your fault."

I couldn't even breathe let alone speak as I tried to stifle laughter and tears.

"It's okay, mom. Maybe Santa will remember to bring it next year."

So although Santa obviously failed, Ryan's positive outlook persevered and that is a win in my book.

Speaking of Santa fail... This morning Daddy came downstairs with a box he found in our bedroom. Inside were a few small gifts that Santa had forgotten to put under the tree. D'oh! Hopefully Santa will have his act together next year!

We hope you all had a wonderful holiday and here's to a prosperous New Year!

ONE YEAR

I remember the day Ryan was born.
I remember how he struggled to take his first breath.
I remember hearing his voice for the first time.
A little over three years later, I watched him struggle to breathe once more.
I saw machines breathe for him.
I grieved the loss of his voice.
I watched him hang on to life.

Last year
I could not imagine a single tomorrow.
I was trapped in a moment,
an instant of fear, worry, and grief
that lasted an infinity.
Any hopes, dreams, worries or fears I once had
meant nothing from that moment on.
There was only one thing that mattered,
only one thing that infiltrated my every thought.
It didn't exist in the past 
and did not allow me to imagine a future,
not a single minute past the one I was living in at that moment in time.
But each moment passed,
each minute expired,
each hour gone,
and every day moved on.


A year has passed.
In a year I have seen life drain before my eyes 
And I have seen it restored
In a year I have witnessed a body deteriorate 
And I have seen it grow
In a year I have been lost
And I have been found
In a year I have experienced profound sadness
And have embraced joy
In a year I have forgotten all that I know
And I have learned so much
In a year I have worried
And I have renewed confidence
In a year I have lost hopes and dreams
And I have gained new direction
In a year I have wanted nothing more
And I have gotten everything
In a year I have watched my baby grow into a little boy.

Today I celebrate the life of my child.
I am overwhelmed with emotion.
Joy, Elation, Hope, Worry, Fear
A loss for words
Swallowed up by the emotion 
a knot in my throat
Tears flow freely
followed by joyous waves of laughter
that wash over my heart
I grieve for what our lives were
and celebrate the life that is now.


Today he keeps talking about when he turns five, 
just weeks after his fourth birthday.
He circled toys in an ad for Santa to bring him.
He told me he wants to go back to the beach.
He has hopes and dreams for a future.
And now, so do I.

disappearing me

I spent so much time working on "who I am", defining my existence, making a niche for myself in this world.  It was important to me.  It was a driving force behind all of my decisions.  I wanted to stand out, be unique, an individual, a rare example.  It turns out that none of it mattered.  I was selfish and didn't know it.  I know it now.

Not everything changed once I got pregnant.  That's when it started, but I was still over confident.  I thought I had it all figured out.  I could continue working full time.  We could live comfortably in this cute little house I bought.  We would be healthy and happy and want for nothing.

When I first held him in my arms I became a mama bear.  Nothing mattered except him.  For the first time ever, I was focused on someone other than myself.  The intensity of this feeling overwhelmed me.  The sight of him had me grinning uncontrollably.  I cried tears of joy at the very thought of him.  I forgot all about my needs, desires, and comfort and spent up every ounce of energy into giving myself completely to this tiny ball of life that I created.

Suddenly who I was, and who I used to be no longer mattered.  The only thing that matters is who I am now.  My children do not know or even care about who I was.  They only know me for who I am now.  I try to be the best mom I can be for them.  I try really hard and some days I feel like I failed them.  Other days I don't try at all and I feel successful.  I do it all for them.  I am focused on them instead of myself.  I let the old me waste away.  She's no longer important.  Her dreams have faded and instead have been replaced by the new hopes and dreams of what I want for my children.  I want them to be happy, healthy, and good.

When you have a critically ill child, this feeling intensifies a hundred-fold.  Nothing else matters but him.  It is hard to even think about simple things like eating, sleeping, & hygiene.  There are a zillion other things to worry about and stay focused on.  And time is precious.  Why waste time doing stupid, non essential things when you don't know how much time you really have.  It is frustrating.   

I define myself now by my children.  Who they are, is what I am.  I am nothing without them.  The thought of losing him... it would be like losing myself.  Who am I without him?  I would be nothing.  I am scared.