Every Day is a Reason... 4-1-2004

This anniversary always makes me frantic.  It's a paradox... A contradiction...

It brings me the greatest amounts of Joy and Pride and Happiness...

It brings me as close to Hell as I ever want to be... It makes my brain shut down and brings all of my fears back to the surface...

6 weeks before Bean was born, I was told by our peri-natologist that a possible diagnosis was "Trisomy 18".  There would be no clear diagnosis until she was born because I was already so far into the pregnancy.  I told no one.  I couldn't bear having anyone else have to go through the anxiety.  I didn't even tell my husband.  I spent the next 6 weeks with thoughts of tiny caskets and how long would we have and what songs should we play at her service...

Bean was born at 34 weeks after a very traumatic labor.  She came out fighting and on her own terms.  She was diagnosed, but not with Trisomy 18.  She was diagnosed with things that we could handle. 

Her first surgery was at 4 days old.  She stayed in the NICU for 1 day shy of 6 weeks.  While there she had her second surgery and a blood transfusion, among many other procedures.  I was surrounded by a shroud of anxiety.  There were no flowers and latex balloons and bunting on the wall.  It was all about scrubbing in before you got to see your child and holding her only as long as it was tolerated.

We came home and slowly started hitting (some) milestones.  Bean could put a smile on anyones face.

Don't get me wrong- we had rough patches before this day...  Surgeries, Feeding Issues, Respiratory Issues, Speech Issues, PT, OT, ST...  Everything in our life was just about moving forward.  And we were...

Until that day 7 years ago today.

I looked at my  daughter and everything became surreal in that moment.  I couldn't tell if it was really real.  As a parent, you are never supposed to look at your child and realize their mortality.  But, I did... She was blue and cold and dead...

In that split second, I became Uber-Medical Mom.  I barked out orders. "You- Call 911 and tell them this..."  "You- Help me with CPR.  Breath, Breath, O2..."

And she was breathing again.  Not conscious, but breathing...

It took several days of medically induced coma to have her brain scans improve from "sluggish" to "sleepy" to "She's coming around"...

For almost two years I carried a picture around with me.  About a week after we were finally discharged from the hospital, I took Bean to a local park.  She couldn't do anything, but I thought that she might enjoy the swing.  Her features had dropped, she was bloated and unresponsive.  Dead behind the eyes... Kind of slumped over in the swing...

It took months of OT and PT to get her to sit up unassisted and to hold a crayon in her hand... She started learning sign again.  She smiled again.  She laughed again.

Then, not only did she smile and laugh, but she did Karate and Gymnastics and Dance and Batons and Horse Back Riding and Hula Hooping!

As much as I re-live the Hell that we went through- It makes every milestone that much sweeter.  EVERY day is a blessing.  Every day is an opportunity for hugs and kisses and random silliness...

I know that my girl will never be a Smartest, Most Popular or Prettiest- But she will ALWAYS be One That Survived!

EVERY day, EVERY moment- is a Reason...

Reason # 14,687

I'm laying here, stressed because I cannot sleep... Stressed because I let other peoples emotions become mine today... Stressed because I became angry about letting other people influence my emotions... Stressed because I have to deal with so much shit in so little time and I feel like the clock does not belong to me...

And then I see the date.  I realize the the anniversary is so close and it forces me to pause... To take a step back... And I stop...

There is nothing in this world that is that important that I should feel that I have to rush... Because we have this time...

I will not rush the kids to get ready for school.  If we are late- so what, we are late.  But, we are there...

I will not rush them off to bed.  If it's past bedtime- so what, we are there...

I will not let the random hug or cuddle or kiss or giggle go by unrequited... They will be returned with mass abundance...

I will not speak of that day in this note, because it deserves it's own voice.  But, I will reaffirm my gratitude for having this day, this moment and all of the moments that lie ahead...

I'm taking a huge guess at this Reason #... Reason # 14,687... Wow... That makes me pretty old... But I'm gonna stick with it...

The Reasons Why I Love...

Reasons... 10 Things that I learned this weekend...

Camp songs are fun.  Even though you feel like a fool, when you look around and see that everyone else is acting like a fool, too- you realize that you're just having fun!

Packing an extra sweater really is never a bad idea.  Apparently, everywhere north of "South Florida" experiences a 40 degree temperature change after the sun goes down.  Your Mom was right on this one.

When you forget to pack your daughters hair stuff and their are no stores around, you get to discover that Silly Bandz are the BEST ponytail holders EVER!

The boy in the wheelchair really is the best dancer on the floor.  He has the charm and enthusiasm that can be measured by few.  And, he can totally rock the Ludacris verse on "Baby". 

Seeing the face of a child the first time that they have gotten on a horse is incredible.  Seeing the look on their parents face is priceless.

Children are far more courageous than adults, but our "special" kids are just fierce.  I can never really tell if I'm laughing so hard that I'm crying, or I'm crying so hard that I'm laughing.

Sometimes, a hug from someone that you only met an hour ago is just as comforting and powerful as a hug from someone you've known your whole life.

Assumptions will only hold you back.  When you see someone and you think they have it all together, it's only because you haven't heard their story.  Make sure that you listen.

We all have a story to tell.  Until you find your voice and tell you're story, you will never realize that similarities are not only things that should draw us together.  Differences are just as important. 

Volunteers are the most incredible people ever.  I feel like I owe a years worth of "Thanks" to the volunteers I met this weekend.  Not only to give so selflessly of their time to our families this weekend, but being reminded that they will repeat the process over and over again on many other weekends and helping many other families.

I had such a great weekend with Bean.  Never once did I have to fear encountering "What's wrong with her face?" "Why does she look that way?" "EWWW!".  It was an atmosphere of fun and caring and compassion and safety.  I'm so grateful to have had this experience.  Bean came to me at least a handful of times over that weekend just to hug me and say "Thanks".

These are the Reason Why I Love...

Reason # 3,260

I call it her "machine gun" laugh.  It reminds me of the loud, violent, all-encompassing 'bat-bat-bat-bat-bat-bat' of a machine gun... I wish that I had a better way to describe it.  You really need to hear it in order to enjoy the hugeness of it...

Background:  Bean was trached at birth and her vocal chords were, essentially, by-passed.  I did not hear a sound from my daughter for years.  I didn't hear her cry.  I didn't hear her laugh.  I didn't hear her speak.  Not because she wasn't doing those things, but she had no voice... I could see her cry and laugh, but she was silent...

The first time I really heard her cry, she was 2 1/2 years old.  It is a memory that I hold very clearly.  I can't tell you the first time that I heard her laugh.  My mind has blocked it.  I think that my mind chooses to believe that she has always been laughing... And I've always heard her laugh...

When she was younger, I used to have this recurring dream... The setting was always different, but it always played out the same way.  We would be going along in silence and she would suddenly burst out in some crazy, smart, beyond her years knowledge kind of stuff...  In the moment, I am stunned, shocked.  The dialogue was always the same...

"Ellie, You can talk!!!!!"

"Mom... I've always been able to talk... I just didn't have anything to say..."

And I wake up... Smiling.... Because *that* is my girl...

Tonight, we sat here watching this really silly movie, and she kept sprinkling the air with her "ha-ha-ha-ha-ha".  Her face contorts with joy and her entire body heaves with such joy and abandonment...

Watching her tonight just filled my heart with joy and it reminded me of how far we have come...  

I love you, Beanie... Reason # 3,260

Reasons # 3,255 and 1,007

All of our kiddos have things about them that make them who 'they' are... I love these little moments that bring the special parts of their personality to the forefront...

Took the kiddos to my parents house today and we decided to take a walk around the neighborhood.  We took the umbrella stroller with us, just in case one of them got too tired on the way back.  A few blocks from my parents house is a hill that the kids go and hang out on.  We've driven past it a million times, but have never actually gone to it...

As we walked, we passed a few boys- just at 'that' age... Too Cool, Pre-Emo, Don't-Look-At-Me-And-We-Wont-Look-At-You... Baby Boy had something else in mind.  He loves to say "Hi" to e.v.e.r.y.o.n.e.  If we go through a drive through, I must roll his window down so that he can yell "Hi".  If we are walking past a parked car and he sees someone inside, he jumps up and down and yells "Hi".  He says "Hi" to everyone in the grocery store, at church, at daycare, at the park... And it's not just "Hi", it is Baby Boys sweet, high pitched, sing-song, infectious "Hi"...  

He skipped and waved and sing-songed "Hiyeee!!!!  Hiyeee!!!"  The boys shifted uncomfortably, with their hands shoved deep in their pockets- just waiting for us to be far enough away to resume their coolness... Baby Boy was unfazed...

We kept walking and got to the hill.  Ellie eagerly ran to the top and momentarily disappeared from my view.  JJ and I followed along the sidewalk.

Ellie came running back into sight and yelled (both in voice and sign) "Mom!  It's sooooo BAD up here!!!!"  I immediately began to run up the hill- my heart sank into my stomach.  What could she have seen that was so bad???  My mind raced... It must be something terrible to have gotten her so upset so quickly... As I got to the top I saw...

Ellie picking up empty, discarded plastic bottles and cans that had been strewn everywhere.  "We can't leave these here! Who would leave garbage here?  We need to fix this..."  We filled up the umbrella stroller with bottles and cans until it was over-flowing.  I promised her that we would bring it all back to Nanny's house and put it in her recycling bin.  That made her very happy.  She diligently picked up every single bottle and can...

We started walking back to Nanny and Poppy's house and passed the same group of 'Too Cool' boys again...  JJ began his waving and yelling "Hiyee!!!! Hiyee!!!"  Each of the boys looked up a little.  One smiled, ever so slightly.  One took a hand out of his pocket and waved at waist height.  The last boy actually said "Hi" back... Then they immediately turned back to their head down, slightly scowling huddle...

As we continued to walk, I silently said a prayer... Thank you for giving me the best Reasons...

Reason # 3,247

I know it's the weekend... I know we bend bedtime rules on the weekend... We eat too much sugar... We watch too much TV... We play too many silly games... We stay up later...

"Alright, Beanie, it's 9:30... You really need to start getting ready for bed..."

And she does, without argument... Teeth are brushed, PJ's are put on... I climb into bed after her to kiss her goodnight and she simply asks... "Mom, please sleep with me..."

At first, I say "No"... It's late... You need to go to sleep... All of the usual answers... (I'm tired... I have laundry to fold... It's way past your bedtime)- but, all of a sudden, my answer changes to "Yes"...

My beautiful girl folds her arms around my neck and holds me close... One last kiss on the cheek as I hear her breathing change into the deep snore of slumber...

I know that my girl has fallen asleep satisfied and happy... I carefully move her arms and untangle our embrace... I take a loving, long look at her sweet sleeping silhouette...

I promptly fall on my middle aged, out of shape ass while trying to climb out of the bunk bed...

But, I do it with a smile on my face because I know that she is enjoying sweet dreams...

Reason # 3,247

Reason # 996

Recently, I talked about how Baby Boy is not a cuddler...

In some weird turn of events, he has become my cuddle boy!  Don't get me wrong... He is not clingy... He does not *need* to be held and he still handles separation the same way... But, all of a sudden, he wants extra hugs... extra kisses... extra cuddles...

Before, when we rocked at bedtime it was just him on my lap... in the same chair as me... but, no cuddles...

Now, we rock at bedtime and he snuggles his cheek into my cheek...

Before, when we said goodnight it was just "Night Night Mommy"...

Now, he holds his hand to my cheek and draws me into his sweet, little neck and coos "I love you, Mommy"... "I love you, John John"... "I love you more, Mommy"...

This boy... He is going to be a heartbreaker... Lock up your girls, because my boy knows how to make your heart melt...

Reason # 9996...