A Vocabulary Lesson

I came across an inspiring video today some friends of mine were discussing on facebook. If you click on the link you can watch it - it is a speech given by Aimee Mullins - a record-setting athlete, model and actress who from childhood has been missing both legs from the shin down. She's beautiful, strong, and has wonderful presence in front of an audience, but it was her opening segment that both captivated and shocked me. She begins by saying that she recently realized she had never looked up the term "disabled." She has heard it all her life - and of course it's counterpart "disability" has made it's way into the daily lives myself of many of my fellow SB families. I've never taken offense to the word (though I may have rolled my eyes and thought "not really" when faced with that terminology in relation to my son) never taken offense that is... until I heard this woman read what a thesaurus had to say about the word "disabled" and only then did I truly feel the a catch in my throat and a my eyes start to burn. Here it is:

Main Entry:	disabled
Part of Speech:	adjective
Definition:	incapacitated
Synonyms:	broken-down, confined, decrepit, disarmed, handicapped, helpless, lame hurt,incapable, infirm, laid-up, maimed, out-of-action, out-of-commission, paralyzed,powerless, run-down, sidelined, stalled, weakened, worn-out, wounded, wrecked
Antonyms:	able, healthy

Can you imagine. Did you have any idea? The thing that got me the most were the antonyms - the things "disabled" is not - "able" and "healthy". I look at my son, I look at Aimee Mullins, I look at the beautiful faces of all the babies I've met with SB, down-sydrome, cystic fibrosis, and numerous other "disabilities" and though I know (like me) their parents don't see them AT ALL as "disabled" - the word is still thrown out there sometimes. And I think "Are they not ABLE?! Are they not STRONG!? are they not POWERFUL?!" You would never see their faces, and all they have done at so young an age, and all the lives they have touched since their birth, and think they were anything but amazing, empowering miracles. I was awakened by this discovery, stunned by it's implications, angered by it's misrepresentation, and saddened by it's insensitivity when I realized something...it's not the definition of "disabled" that limits our children - it's the word choice. We're simply using the wrong word. And now that I know the weight of the word "disabled" I am certain it will never be used in my presence to describe a child or any person for that matter - for there is no one out there (however suffering or challenged) who is not capable of greatness, who is not powerful beyond their disease or diagnosis, who is not able to change lives, touch hearts, heal souls, and give strength. And if you are ABLE do all this...no one... no one... can call you otherwise.

And to borrow a favorite phrase from a new friend and her blog...

The Naked Cowboy

You may think you've seen some good lookin' cowboys...

..but you've never seen one as cute as this.

Okay - so leave it to Daddy to think up this photo shoot. :) But when does Mommy ever pass up an opportunity to use the camera? Never! And with the especially warm weather yesterday, and this beautiful quilt just given to Jet this week (handmade with love and so special! Thank you Miss Lanetta.) We had no choice but to indulge out little model. :)

Could he be happier to be naked and outside? Let's just hope he's not always this comfortable with such public displays. :)

My All-American.

This first taste of warmer weather made us so excited for this summer to come. Don't get me wrong we're happy for spring to finally be here too. But Summer...ahh...

Daddy will be home all the time (a great benefit of teaching) and we can't wait to take our little man to the park, pool, backyard and all those fun places he slept through as a newborn last summer. :) So while I know we have a few rainy weeks ahead - and it's not quite as warm today - I look at this pictures and smile at the fun we will have and the memories to come.

Magically Delicious

No I did not prop his arm up like that....if you've been following the blog for a while you know this....but for those of you who are new, my son's got some major modeling skillz. :) lol

So cool. Giving off little demure smiles....

...then he throws in one of these.

What a ham! Haha. Keep 'em guessing baby!

uh-oh....Lady's not wearing green...

Happy St. Patrick's Day from our Lucky Penny!

Soccer Balls and Special Visits

David took these pics the other day of Jet and his newest toy - the soccer ball.

Yes Daddy bought one (for Jet's birthday... but somebody couldn't wait to give it to him) and Uncle Daniel sent the other. The Penny Boys are avid soccer fans and Jet is getting an early start. His Daddy can't wait to kick around the ball with him outside (but isn't quite sure he's up for him playing high school soccer - I guess being a coach is one thing...but to think of your little boy all grown up playing rough with the big boys is a scary feeling.) So we'll see...for now Jet prefers "licking" rather than "kicking" the ball.

He got to show off his new toy to the perfect people - Grandmother and Grandpa Penny who know a thing or two about soccer as well. :) Jet loves seeing his grandparents and performs so cute when they come over. I just know they'll be at every game should Jet ever take to the field.

Look at Jet's serious model face! :)
They all matched too! It was coincidental but that's definitely a Penny tradition.
Love from Grandmother.
See you soon Grandpa and Grandmother!

The Good, The Bad and The Ugly

Okay - so don't panic. There is really nothing "bad" or "ugly" going on here (aside from the yucky bronchitis Jet has had the past few days now ( cue collective "aww poor baby"). ) I merely reference the familiar phrase as inspiration for this post. While watching sesame street on the floor one morning last week, I was playing with the camera (yes - I know - but there are still buttons I don't understand on this thing) and I noticed the array of Jet's toys scattered about. There are so many (some I'm not even sure where they came from) and as I looked at them all I decided to pay tribute (and give titles) to a few...

This colorful cow (once a frighting toy to our Jet) plays music and vibrates - moving itself across the floor in an attempt to lure your baby forcing him/her into crawling after it. lol. Jet is not so easily fooled and is content to watch it then pick it up when it comes to him ( i.e.when mommy caves and points it in his direction or flat out hands it to him). But he loves it. And it is only second to the stacking rings as far as favorites go. Jet is a pro at the stacking rings.

Yes. The paci. Once used for car rides, naps and quieting noisy moments in church - now serves as a great discus or boomerang that only comes back to you when somebody fetches it. Most of the time - it is ignored.

Do you ever outgrow a soft stuffed animal? I hope not. Jet is the King of Cuddle and still loves all things soft and furry. Including unwilling furry toys like our cat.

Which brings us to our final cateogry...

While there is a lot of unsatisfied reaching done by our little man - none are so earnestly sought after as the "forbidden." These tokens of temptation are rare and wonderful commodities for two cubby hands and a mouth of drool. (Yes. I'm talking about Jet all you funny people who will comment on that pretending I'm referring to David or something.) :) I've almost given up on jewelry entirely (almost) and I've certainly learned the value of drawstring sweatshirts and scarves with fringe or tassels. But when I can't stand to be pulled and chewed on anymore - I can always count on this toy to serve as a suitable distraction.

The Bongo Drum.

Great for hitting, lifting and licking.

I am very proud at how he's figured out when the music stops to hit the drum and get it going again. He's destined for greatness I tell you.

I mean - he's got the whole "crazy professor" hair going on already.

And he is so curious.And pensive.
And aggressive. lol.
Is this a King Kong reversal or what?
Love his smiling eyes.

And this cracks me up. I can't tell if he's saying "speak into to my good ear" in his old man voice or "say what?!" in his cool teen voice or " I can't hear you!" in his pep rally voice. But whatever it is....it's too funny.

And of course. Those little miracle toes. They were always looking at those little feet on the ultrasounds. I will never forget the doctor saying "feet look remarkably well." And though his right foot (below is his left foot) is a little weaker and has one little toe that seems to stick out farther than the others (lol. it's true)...they will always be perfect to me. And they will forever be a reminder of how blessed we are to have a baby with such "remarkable" little toes.

We're so Funny!

There's nothing so funny as a baby faking a laugh.

(And proud, thankful Mommy moment - look how crazy he's bouncing in his seat?!)

Perspective

I've been watching a lot of Sesame Street (Mom's do you hear me? :) ) and everyday there is a "Word of the Day." Kind of like a vocabulary lesson for the genius kids out there who can actually pronounce words like "exquisite", "quest" and "marvelous". So in honor of my new past time....I'm introducing my own Word of the Day - it's really more like the Word of my Life.

Perspective

There's something about the word "perspective" that can bring about positive and negative feelings. As an emotional teenage girl (as opposed to the emotional adult I am now? lol.) I used to hate when my mother would talk about "perspective" when I felt I was in a crisis. She was always right, but who wants to admit to that? And what child hasn't heard "there are starving children who would love to eat your broccoli" and then silently begrudge those words and think "I honestly don't think they would love broccoli."

Over the course of my life I would occasionally witness something that brought perspective to mind. It was an "on-again off-again" relationship - more of an acquaintance than relationship really. But last January 2009 - I was reunited with "Perspective" - and I will tell you - it was a wonderful, welcomed reunion. Perspective was looking amazing (is that the same Perspective I knew in high school? Boy, had she changed.) and I was shocked at how much I appreciated seeing her again (yes - Perspective is female - can you really be surprised?). On Thursday January 8, 2009 I truly met Perspective for the first time. She graciously appeared at our doctors visit that Thursday morning and (after the horrifying appointment the Wednesday before) she was like a cleansing breath of fresh air...well, first she was a wave of shock...a gaping mouth...and a sputtering crazy woman saying "what? but the doctor said...? What?!"...followed by a deep sigh of relief... and the biggest smile in my heart I've ever felt. It was Thursday, January 8th and we had just been told our baby had spina bifida in the lower spine. It was a fairly large opening and could affect his walking, bowels, bladder and maybe some other gross motor skills. It was the most common form of S.B. and we would need to meet with a neurosurgeon soon to discuss the closure surgery which would take place soon after he was born.

It was Thursday January 8th...and I was so relieved.

I was so happy.

This was a miracle.

("HUH!?" You might be thinking...unless you've heard this bedtime story before...)

That's were Perspective came in.

The day before (at our first ultrasound appointment) we had been given the heart-breaking news that our baby was likely (I'll never forget the wording) "incompatible with life". That the type of spina bifida they saw on ultrasound was rare and devastating and that we should consider our options (i.e. terminating the pregnancy). We were told our baby might not live. And if he did survive birth he would not have much of a life without breathing tubes, feeding tubes, every possible assistance to do EVERYTHING. He would be on life support entirely.

So, on Thursday January 8th - hearing THIS news - that the S.B. was common - that we didn't have to worry about him breathing or eating on his own -That he would LIVE without constant medical attention and support - was beautiful news.

Perspective at her purest.

Relief at it's sweetest.

God's hand at It's clearest.

To this day the memory reminds me to thank GOD for the miracle He performed. For saving my son and holding my hand through it all.

For turning tragedy into blessing - grief into gratitude.

And though there was still a hole in my baby's spine, the gaping hole in my heart - at that moment began to heal.

Since that day Perspective and I have been close confidants. We go to every doctor's visit together, watch every crawling baby together, post every blog post together...now like all relationships ours has moments of weakness...I'll forget to invite her to go shopping with me and I'll see a toddler walking and I feel anxious, envious, or saddened by the uncertainty of my own situation...Perspective's absence has that negative side-effect. But thankfully she's never far...and she always finds me again soon with a "Why didn't you call me?" and a "Well I'm just glad we're together now." She shows me how things really are - and not how I'm afraid they will be - and reminds me of that day we met...really met for the first time. She humbles me with how quickly I forget sometimes. And uplifts me in the form of the amazing new friends I have met.

And then I feel better.

And then I feel stronger.

And then I feel grateful.

Thank you God for teaching me.

For loving me.

For helping me.

...with this comforting, humbling, edifying friend - Perspective.