Sadness

The last 16 months have provided my girl with more opportunities and  a sense of normalcy that the first 7 years and 8 months of her life never did.


She went swimming.  She loves swimming more than almost anything else in the world!





She swam with dolphins.  Dolphins are her favorite animal.  *See swimming.


She was able to attend school without a medical professional shadowing her everyday.  She hated having that extra attention brought to her.  She was able to experience normal academia.


She was able to attend summer camp.  At her school, but summer camp nonetheless... She went on every field trip and made every art and craft and reveled in everyday just hanging out and playing with her schoolmates and friends.





She was able to go to aftercare at her school.  Some kids would hate being in aftercare, but she loves it.  It's the social normalcy that she has been craving for years. *See summer camp.


All of this because of a 1/8" tube.  At many points it was thing that maintained her life and breath.  After much medical intervention, it just became a nuisance.  Unneccesary.  A hinderance.


After 7 years and 8 months it was gone and she got to begin getting a sense of the real world, not the protective world that we had created for her.


Life began living.


Today that all came to a screeching halt.  We are faced with the possibility/probabilty of having to re-introduce that little shit piece of plastic that will turn around everything in our lives.


This summer, not only is she enrolled in her school summer camp (with weekly, sometimes bi-weekly, pool/waterpark trips) but I've also applied for her to go to two sleep away camps.  One week at the Florida School for the Deaf and Blind and one week at Camp Boggy Creek.  Both of these would be such incredible opportunities for her, if she is re-trached, that changes the acceptance factor...


No more swimming.  Being shadowed by a nurse, even if you don't need it.  If nurse doesn't show up, you can't go to school, even if it's on the day of the field trip that you've really been looking forward to.  No more aftercare and no more summer camp.


I've been struggling so much lately with the whole "G-d doesn't give you more than you can handle" and "G-d always has a plan"... I don't see what this plan is.  If you need to punish me for something, then punish me..  Why would this be punishment for this girl whose life has just begun?  A girl who has been through so much to get to this "normal" life...


If anyone can hit me up with an answer, feel free to comment... because today, I'm just sad...

Reason # 3321

Sometimes, as a parent, you envision these moments... these dreams...
This morning, I slipped a copy of Justin Bieber "Never Say Never" dvd into her backpack with a special note of encouragement...
I gave her extra money to get books at her book fair today...
This evening, I picked her up from dance and told her that I had 2 coupons AND a gift card for Justice, so lets do some fast shopping, because we should be able to get ALOT of stuff for cheap...
My expectation:
"Thank you, Mom!"  "You are awesome"  "Thank you for doing so much for me"  "I appreciate you"
Actual:
"Mom, they were sold out of the JB poster at the book fair"  "Mom, I finished my math homework" (I throw this in b/c it shows that she went through her backpack and saw the dvd and note with no acknowledgement) "Ellie, please put that down, we already checked out and need to go... (after 1.5 hours at the frikkin store...)
This led to a reprimand about gratitude, which led to a breakdown...
After some reflection, she told me that she had a song for me...
She carefully and determendly sang me a song that she made up in her head...
"I'm sorry, I'm sorry, I love you, I'm sorry.... Oh wait... I... thank you... Thank you for everything..."
In her sweet un-intelligible sing-song...
She makes my heart melt everytime....
Reason#3,321...

Reason# 3314

Out of ALL of the cards that she could have bought...

Flowers, Comics, Music, Silliness, etc...

"Mom, do you like fish?"

I didn't even think that the answer to that question was valid... She knows that I hate seafood...

She chose to get me card that would guarantee us a lunch date together... She has already told me that it *is* Red Lobster...

I don't think that the card is even activated because I only gave her $5.00 for the card and it cost $12.50...

But, she wants a lunch date with me... For her, I'll eat Red Lobster...

I will keep this date, no matter what!!!

She could have gotten me any silly card in the store, but she chose me...

Reason # 3,314

Reason # 3,313

We went to the Hallmark store today to buy Mothers day cards for Grandma and Nanny.  Ellie insisted that she wanted to buy a card for me, but it had to be secret...

I gave her $5.00 and told her that she could pick out whatever card that she wanted from the whole store.

She walked up and down the aisles and kept coming back to me...

"Mom, do you want a card with music?"

"Bean, pick out whatever card that you want to get"

"Mom, do you want a card a card with flowers?  What color flowers do you like?"

"Bean, pick out whatever card that you want to get"

Quite frankly, I wouldn't care if she picked me a card off of the St Patrick's clearance lot or a card for Kwaanza... I just know that she is excited about picking it out by herself...

I finally ask an employee to go to the card aisle and find the kid who looks overwhelemed and ask her to help read the cards... I explain to her that I don't care what the card is, as long as she is happy with it... 

After ten more minutes with a screaming two year old in tow, she finally goes to the register, pays for the card, and we leave...

She keeps telling me that it's the "Best Card Ever"...

I will let you know exact;y what it is tomorrow...

Happy Mothers Day!!!!!!

Reason # 3,313

Reason # 2,177

"Mom, I want to..."

"I know, but I think that you will be too scared.."

"Mom, I want to...."

I am seven months pregnant, we are in a foreign country and all my crazy girl wants to do is repel down the zip line from our hotel to the beach...

I did it the year before... Daddy did it the year before... She did it the year before...

Very unsuccessfully...

The year before, she was a wreck... we could barely get her back to the hotel because the trauma was so significant... 

She is determined to do it this year...

I'm sick to my stomach... She straps up, she smiles at me, she gives me the thumbs up sign....

I'm freaking out but she is fine...

For a few terrifying seconds I hear her scream on the way down... I can't help her... Her dad is at the bottom... Then all is done, he flashes me a thumbs up... She wants to go again!!!

My girl overcomes her fears... she is, simply, a warrior among warriors... She is hardcore...

Reason # 2177

Reason # 1058

"Mom, your back hurt?"

Thank you! Thank you!

Over the last week, I've been dealing with back pains... (Don't we all?)  Whenever JJ asked to pick him up (which is pretty often), my response has been- "John John, Mommy's back hurts". His response has been- "I hurt your back?".  

Pretty innocent, huh?

Now, take into account JJ's speech delay... It sounds like this... "I hate you back!"

AAAAAHHHHHH!!!!!!!!!!

I can only imagine the reaction of JJ's Daycare and the call to Child Services.... Their version of the dialogue is...

Mom "John, I hate you."

John "Mom, I hate you back" 

Now, he says "Mom, your back hurt?"... I love this sweet boy...

Reason # 1058