Reason #... I don't know the number...

Reason #... I don't know the number...

I've always assigned a number to the the date, but for this one it's just a projected date... a maybe... a hope... a promise... that I don't know will be fulfilled...

Bean is handling her re-trach, physically, with flying stars...

But, emotionally, she is a wreck... I'm a wreck, too...

She cries to me to be able to swim and dance and just be back to herself... She equates herself as a 'baby', because only babies need to have these things...

I assure her that she is still the amazing, dancing, foolish, outgoing girl that is 'Ellie'...

But, she's not totally buying it...

I've sold my soul to the devil and promised her that she will be swimming again by the end of summer, but, I fear that may not be the case...

She will be seen by the BEST team to make this possible for her, but... she is unique...Even within her syndrome, she is unique... and 'unique' often ends up in dissapointment...

We are the case that defies definition...

When I was young, I thought that I wanted to make my mark at being unique, but now I curse it....

I long for typical...

I want my girl to have all of the god-damned typical things that she deserves...

I hate having my girl fall asleep feeling like she's missing out on all that life has to offer her...

I hate falling asleep being bitter that my awesome girl is feeling inadequate and secondary...

I know that in the end, we will perservere and be strong, But In this moment, Im just Bitter Mom...

Reason #... I'll get back to you with a number...

Reason # 1,375

Reason # 1,375....

I wish that I had videotaped this moment, but I really didn't know that it was going to happen...

After 8 days of the kiddos being apart, wih the exception of one visit and many videos back and forth, I was able to bring Bean home.   We went to JJ's day care to pick him up and his reaction was priceless...

"Ellie!  Ellie! You were in the hospital and you're home!!!!"

They hugged in the way that only soulmates do...

He lifted her face in his hands and proclaimed, "Ellie... Home..." 

He has this incredible compassion and sensitivity that I've never seen in a 3 year old... They came home and played and loved on each other...

He never once tried to touch her trach or g-tube or owwwwies...

He just knew that it was Ellie...

His sister was home and all was good in the world...

Bedtime tonight had lots of extra love and hugs and kisses....

I so love this Boy... He never skips a beat... His outpouring of love is phenomenal...

Beanie is so Blessed to have him in her corner.  They have a bond that surpasses this world...

My beautiful Baby Boy...

Reason # 1.375

Reason # 3,612... Part 2

Reason # 3,612... Part 2... RockStars...

Bean had Field Day at her school today... 

I played hookey from work part of the day so that I could be there with her...

AMAZING.

The interaction that she has with the kids from her school... Her peers are loving and patient and protective of her...

This was something that I really needed to see after yesterday...

Thank you to this awesome group of kiddos that are not "Little Bastards"... You guys are Freakin' Rockstars!!!!!!

Thank you for being a group of kids that I am confident will become the type of adults that I want to see in this world...

Reason # 3,612... Part 2

Reason # 3,612

Reason #3,612.... Those Little Bastards...

Had another one of those moments yesterday... One that broke my heart...

Had to run some errands at he mall.  Decided to let the kiddos run around in the indoor play area to have some fun and let off some steam before heading home...

Bean was doing backflips and JJ, as always, found a group of boys to clown around with...

I let my attention lapse for a few minutes, and when I looked up, I could not see Bean.  I stood up and started to run around the area calling for her.  I finally found her curled up under a waterfall structure... Crying... Sobbing..

I pulled her out and tried to calm her down.  I asked her what happened... Did anyone say something or do something to her???  She just sobbed and said that she "made the other kids scared."  She told me that the next time we come to the play area, she will just go under the waterfall structure so that the other kids don't have to see her...

I looked around to see what kids were nearby... I saw kids looking sheepish... I saw kids looking upset that they may have been wrong... I saw one Dad down on his knee sternly speaking to his child while pointing in our direction...

This should have been an opportunity to be an educator...

But, sometimes I just don't feel like taking the high road... I just don't feel like parenting 'your' kids...

I took the low road... I glared like the devil at every one there that did not step up... I felt them cower in discomfort... In my heart, I wished them harm...

I scooped up my kids and we ran...

We ran for the comfort of being away from them...

When we finally sat, I looked Bean in the eye and I told her, I vowed to her, that she is AWESOME...

"You are so amazing and strong and beautiful.  You possess love and laughter and life.  Those kids are STUPID and POOPYHEADS!!!!! They are vain and ugly... They do not deserve to have someone as awesome and amazing and funny as you in their lives... It's their loss... Those little bastards..."

She laughed... Still crying, but laughed...

Not my proudest Mommy Moment... But, you know what... This is life.  

This is our life...

I asked her today if she wanted to talk about it and she had seemed to have forgotten about it... But, it makes me wonder what kind of memories she will hash up in the future...

But, at least today, I have this amazing, funny kiddo...

Reason # 3,612 

Reason # 3,602

Reason # 3,602....

Bravery:

\ˈbrāv-rē, ˈbrā-və-\

The act of being brave...

Part 2

At the doctors office discussing having to put the trach back in:

Scene:  Bean is almost 10 years old and my vow to her is to keep her actively involved in all of her sugical decisions.  My vow to her is to keep her #1 involved in the decision making process.  Unless it is 'medically neccesary', she WILL have a say in whether or not we go forward with a procedure...

We KNOW that it is 'medically neccesary' to put the trach back in, and she is on board...

Putting back her feeding tube is another issue.

We have the option of an 'ng tube'- A tube that will run through her nose into her stomach.

Pros: No surgery needed

Cons: She will have a tube taped to her face for several weeks.  Will need to be taped in place. With her latex allegy and skin sensitivities, may cause some rashing or scarring.  If it comes out, we will need to go to the hospital to have it placed again with xrays and much discomfort...

We have the option of a 'g-tube'- a tube placed directly in her tummy. (she had had these placed twice before)

Pros: Once it's in, it's in.  If it comes out, I can put it back in.  No hospital trip (barring complications)

Cons: Surgery.  Her body rejected her last g-tube placement- constant infections and acid leaks... Hopefully we can keep this under control this time...

The feeding tube, either way, NEEDS to be placed, to administer food and meds...

 Her decision is to put the g-tube back in...

That is bravery...

She is making a choice and weighing her options...

As an adult, I cringe at giving blood or getting a collegen shot....

Yet, she takes it all in with a dignity that astounds me...

Maybe that is what this post should be about... Dignity...

I will save that for what we have in the weeks ahead...

Reasons Why I Love...