Reason # 3,394

The Great Butterfly Rescue...

Dropping the kids off at camp and daycare this morning, I had decided to drop JJ off first.  That is out of the way, but I felt like I needed to spend a few extra minutes with Bean this morning.

We pull into a parking spot, the kiddos both climb out of Beans side of the car. She looks down and exclaims "Ooooh! A Butterfly!  It's so beautiful!"

I look down and see a beautiful butterfly that is missing half of a wing and is clearly not going to fly away to a happy ending... 

I shuffle the kids inside because I need a few minutes to figure out how to explain a dying butterfly to a 9 year old...

We drop JJ off in his classroom... Hugs... Kisses... And I realize what I must do...

I have to lie...

We get back to the car and the butterfly is still laying in the same spot, between two parking spots.  At this point, Bean seems to realize that something is not right and that the butterfly is injured.

Bean: "Mom, we need to take her home and help her."

Me: "Sweetie, we need to put her in a safe place and let the butterflies take care of her."

Bean: "How will they know what to do?"

Me: "They will know... Some butterflies are like doctors and they help take care of butterflies that don't feel well... We need to move her out of the parking lot and on to the grass"

Bean: "If we move her, how will the butterflies know where to find her?"

Me: "They will know.  Butterflies know how to communicate with each other and they know where each other are... It's like magic..."

Bean: "OK"

She gingerly placed the butterfly in her hand and laid her gently in the grass.  There was no longer a risk of being squished by a car or foot traffic...

I dropped Bean off at Camp and I had to find a counselor to explain the situation to.  Her ASL interpreter comes in a little later, and I knew that anyone trying to decipher the events would surely lead to frustration and confusion.

Flash forward:  At the end of the day, I typically pick up Bean first and then we get JJ.  I knew that if I picked Bean up first, she would go looking for the butterfly.  I decided to pick up JJ first...

I pulled into a spot and walked over to where we had been parked this morning.  Please let the butterfly be gone.  I don't need to know by what means, I just want to not see that butterfly. Unfortunately, I saw the butterfly... Damnit...

The first thing that Bean asked when I picked her up was "How is the butterfly?"

Me: "She was gone, baby.  I told you that the other butterflies would take care of her.  You did such an amazing thing- making sure that she was in a safe place..."

Bean: "I'm so glad that she is OK..."

I'm a horrible person for lying, but she is so proud of herself and so pleased that the butterfly is safe...

Reason # 3,394

Reason # 3,391

I took the kiddos to the park last night.  

We usually go to 1 or 2 of the local parks in our area, but last night we went to a park pretty far away from our home... I mention this, because, when we go to one of our local parks we usually run into someone we know.  Last night was way outside of our zip code and no one knew us...

Over the course of our play, two kids approached me and asked about Bean.  Neither was mean, just curious...  Both were about 10-12 years old...

The first  was a little boy.  He approached me directly and asked me if she was sick, because he surely did not want to get sick, too... He was more than happy to play with her and help her on the stuff she needed help with (a 'zip-line' kind of thing) as long as he wouldn't get sick.  He helped her several times...

The second was a little girl... I heard her talking to he grandmother... "She has stitches and I think she's hurt and she's ugly!"

Of course, my Mommy Defense Shield went up and I took the defensive... I called to her across the playground... "If you have a question, come here and ask me."... I immediately saw that she was distressed and she started to cower into her grandmother,,, I immediately changed my stance... "Hey... It's ok to ask questions... If you want to know anything, I would be happy to talk to you..."

They came over and the girl confided that she was scared that Bean was in pain... She thought that her scars were stitches and had thought that she was in an accident... I explained to her about Bean not being able to breathe and eat when she was born, and that she had had alot of surgeries... I pointed out to her that Bean was having so much fun on the playground, just like everyone else, and that she 'just looks different' but she is just like every other kid there.  I explained to her that using the word 'ugly' is not ok... It wasn't the word that she meant to use, but it was the easiest word to use... The girl and grandma left smiling and happy and, I hope, a little enlightened...

At lunchtime today, Bean asked me what the girl i the park was talking to me about...

Ugh... That moment of truth... She has to be able to handle these types of situations, but she's only (barely) 9... How much do I disclose to her....

By the look on her face, I think she knew, so I couldn't  lie to her...

I asked her if she really wanted to know and she said yes...

I told her... The whole story... and she was, remarkably, fine with it.  She was glad that I told the girl the truth...

If I can't tell her story, who will???

I am constantly amazed by her strength and wisdom...

Reason # 3,391

Reason # 1,120

I've mentioned before that John John is a huge fan of the song "Baby" by Justin Bieber...

I've often caught him randomly singing it (well, his version of it...).  

From time to time, he will just walk up to me and say "Mom. Baby."  That is my cue to sing the song... 

Anytime that he can get Beans phone away from her, the first thing he does is turn on her iPod and go to "Baby".

I'm a huge Belieber.  Go ahead and mock me.  The former punkish girl who still has pink hair... I Love Rock!  I Love Alternative!  I Love Industrial! I Love......JB!

I can't help it... I love his story... I love that he is funny and can poke fun at himself... I love that my kids get happy when they hear his music or watch his movie...

Tonight, John John grabbed the iPod and I immediately heard... "Baby, Baby, Baby... Ohhhhhh.... Baby, Baby, Baby... Ohhhh...."

I went to the kitchen to make dinner...

After a few minutes I realized that what I was hearing was...

"I want to live,

I want to give

I've been a miner

for a heart of gold.

It's these expressions

I never give

That keep me searching

for a heart of gold

And I'm getting old.

Keeps me searching

for a heart of gold

And I'm getting old."

He had switched over to I Heart Radio and was listening to Neil Young... He is sooooo my boy...

Reason # 1,120...

Reason # 1,120

I've mentioned before that John John is a huge fan of the song "Baby" by Justin Bieber...

I've often caught him randomly singing it (well, his version of it...).  

From time to time, he will just walk up to me and say "Mom. Baby."  That is my cue to sing the song... 

Anytime that he can get Beans phone away from her, the first thing he does is turn on her iPod and go to "Baby".

I'm a huge Belieber.  Go ahead and mock me.  The former punkish girl who still has pink hair... I Love Rock!  I Love Alternative!  I Love Industrial! I Love......JB!

I can't help it... I love his story... I love that he is funny and can poke fun at himself... I love that my kids get happy when they hear his music or watch his movie...

Tonight, John John grabbed the iPod and I immediately heard... "Baby, Baby, Baby... Ohhhhhh.... Baby, Baby, Baby... Ohhhh...."

I went to the kitchen to make dinner...

After a few minutes I realized that what I was hearing was...

"I want to live,

I want to give

I've been a miner

for a heart of gold.

It's these expressions

I never give

That keep me searching

for a heart of gold

And I'm getting old.

Keeps me searching

for a heart of gold

And I'm getting old."

He had switched over to I

Reason # 1,120...

Reason # 1,113

When JJ gets excited about something, his voice switches dramatically...

Normally,his voice is very sweet... High-pitched and sing-songy... His words run in to each other in an almost drawl and he has a lisp that makes him sound very endearing.... He reminds me of a cartoon character that I like.  A little girl on "Phineas and Ferb" that always says "Whatcha' doin?" in the same type of voice that JJ has...

When he gets excited, his voice becomes very low-pitched... Almost like a growl in the back of the throat... His words become precise and his tone is a little bit louder...

Driving home tonight, he made an impassioned proclamation- In his excited voice...

JJ: "Mom!!!! I had FUUUUN"

Mom: "Yeah, JJ You had Fun?"

JJ: "I liked lights go boom!!!"

Mom: "Yeah, you liked it when the lights go boom?"

JJ: "Yeah... I lIked the lights go boom!"

I so love this boy... Reason #1,113...

Reasons# 3,344 and 1,086

Days like today make me very happy and very sad...

I'm blessed to see my kids grow and thrive into absolutely incredible little people, but I'm very sad to not see my babies be babies anymore.

Today was John John's first trip to the Dentist.  We've spent days prepping for it, but it could really have gone in any direction depending on his mood at the moment.  He was amazing!  He climbed into the chair without hesitation.  He followed every request with very little direction. He was charming and brave and funny...

Today was Ellie's millionth trip to the Dentist.  After years of countless medical intervention, something as simple as a floride treatment can bring out the "White Coat" fear... She turned to me and told me to go play with John in the waiting room.  She told me "I think it's ok if you go outside. I'll let you know if I need you."

I was absolutely blown away at the level of maturity and bravery that they both displayed today.  I am so sad at the loss of my "babies", but I am so proud who they are becoming... When did that happen?  How did that happen?

Everyday they just make me stop in my tracks... They truly are the Reasons Why I Love....

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...