Reason # 3,760... Claiming your own reality...

Reason # 3,760... Claiming your own reality...

I had a very sad conversation with a stranger at the grocery store. It was an exchange that forced me to remember some things that are so diatant, that they really don't feel real to me...

A woman walked into the store behind Beanie, JJ and myself.  She tapped me lightly on the shoulder and asked me if I would mind if she asked me a question...

Of course not... This isn't my first time at the rodeo... I'm used to strangers asking me about Bean and what is 'wrong' with her...

"How did you bring yourself to go out in public with your child?"

WTF??? No you didn't just go there!!!! Every protective Mom bone in my body flared like a Lioness ready to pounce!!!  I knew that in that instant I had a choice... To react... or to take the deepest breath possible and walk into this conversation with an open mind... 

She must have sensed her phrasing was not appropriate, and she began to tell me about her son.  Not very much, only that he is 'Special Needs' and that she is embarrassed to take him out in public.  She asked me if I had ever been embarrassed and how I moved past it...

I immediately thought back to two specific times, when Beanie was still an infant, that I did let myself feel 'off' for having her out with me... I wouldn't say 'embarrased', but I had this weird perspective that I was ruining everyone elses moment by having her there...

We were at a Dr appt and she started getting 'junky'... For those of you that are not living in the 'trach world', 'junky' is when your secretions/snot become kind of dry and thick.  Your trach doesn't have all of the cool hairs and defense mechanisms that your real nose has... Parents of kids with trachs travel AT ALL TIMES with a suction machine (among other things).  It is, basically, a VERY LOUD, portable vacuum that sucks yucky, stuck junk out of your trach. I was embarrassed to suction her in the waiting room because I felt like everyone would be all judgy and shit... I rolled her out into the hallway and performed her suction... And almost missed our Dr appt... That we had waited a long time for... And driven a long way for... Really...

If a parent had chosen to blow their childs nose or have him cough into a tissue, that would be totally normal and fine...Why should this be any different...

The next time, we were at the mall and Beanie was on schedule to eat.  At this time, Beanie was still 100% feeding tube dependent and still had this huge foley that we kept inside her diaper when not in use.  She was in a onesie and I had to undo the onesie and the diaper to get the foley out.  I then had to do a gravity feed through the tube.  I remember the feeling of people kind of looking sideways at us and feeling uncomfortable... I fed her quickly, then covered her back up... Then, I felt the pang...

If a Mom had given her child a bottle or had chosen to breast feed at the mall,no one would look twice... Why should I feel uncomfortable for giving my child nutrition???

I explained both of these situations to the Mom that I was talking to... I hate that I ever felt that way, but maybe, by me having those small moments of doubt and feeling self-conscious, I can help someone else realize that they don't have to... Their child should be their Joy...

I'm really glad that I decided to take that breath... Hopefully it will help to change her perspective...

When we parted ways, she told me that she was very glad to have had the conversation and it gave her alot to think about....

Reason # 3,743... Why 'Normal' is important...

Reason # 3,743... Why 'Normal' is important...

When you spend your life skating just outside the parameters of what everyone else is doing and achieving, doing 'normal' things becomes kind of treasured.  Even if your 'normal' isn't the same as everyone else 'normal'.  It's your Brass Ring.  It's your Ribbon.  It's your Silver Lining.  It's what you look forward to.  It's your Reward...

In the begining, our 'normal' consisted of Hospitals and Doctors and Nurses. NICU.  Home Health.  ER.  PICU.  Diaper bags filled with Medical Supplies.  Portable Sat Monitor.  Portable O2.  Feeding Tubes.  Trachs.  Weird looks from strangers.  Fear.

Eventually, our 'normal' changed.  Home Health visits stopped.  ER visits became less frequent.  PICU stays became shorter.  'Normal' things were added- My Gym, Horseback Riding, Karate, Dance.  All of these 'normals' were very closely supervised.

As more time passed, even more things became 'normal'.  School.  Full Time Nurse at school.  More surgeries.  Supervised activities.

And then, in December 2009, our 'normal' changed.  Finally changed to allow us to include some real life 'normal'!  For the first time ever- no Trach and no Feeding Tube.  No Nurses.  No Medical Supplies.  No O2.  Guess what our 'normal' started to include... Swimming Lessons.  After School Activities.  Drop Off Activities.  

And the Biggest Brass Ring of ALL!!!! 

Camp.  Not just some kids at the local Y or JCC.  Not drop off/pick up camp.  But real-life, in-the-woods, sleeping-on-a-bunk, singing-campfire-songs, away-from-your-parents-for-the-first-time, giggling-with-other-girls-in-the-middle-of-the-night camp.  MotherF*%#in' Sleep Away Camp!!!!!!!

Granted, this camp is geared towards kids with medical needs and the have a freakin' 'hospital' on campus- but, when the campers are there, they are ONLY CAMPERS.  They are never their diagnosis... To live your life for just one week as not being labeled as your diagnosis is pretty freakin' huge to a nine year old...

Beanie has told me several times over the last year that Camp Boggy Creek is her favorite place in the whole world...

Well, our 'normal' changed again this year.  In just one day, in one OR, under one anesthesia- poof... Trach and G-tube are back... Welcome Back School Nurse, O2 Monitor and Bulky Bag o' Medical Supplies.  GoodBye Swimming, After School Activities, Freedom...

I got a call from Camp Boggy Creek today.  They accepted Beanies application for a spot at camp in August.  She cannot go because of the Trach... After I hung up with the Camp Director, I felt like I had been punched in the gut.  The last two months have been multiple surgeries and painful procedures in the hopes to get back to 'normal' soon.  But, it's not soon enough...

I know that we are looking at the light at the end of the tunnel and that it will get better, but today just sucks...

xo

Reasons # 3,670 and 1,420... Mothers Day...

Reasons # 3,670 and 1,420... Mothers Day...

I keep being asked the same question... "Aren't you upset that you didn't get to spend a special Mothers Day with you kids?"

Backstory:  My Mother Day weekend consists of taking both the kiddos on an 1,100 mile road trip across four states so that my daughter can have, what we hope will be, a life altering surgery.  My Sunday May 13, 2012 was spent driving and driving and stopping for potty breaks and driving some more... Somewhere in Tennessee, a cashier wished me Happy Mothers Day.  Bean turned to me asked, "Is today Mothers Day?"  As we got in the car, both kiddos started laughing and yelling and sing-songing "Happy Mothers Day!!!!!"  It was a great day...

For the most part, our kids are all the same.  There are moments that make us happy beyond words.  There are moments of unmeasureable frustration.  Every moment of glee is countered by a down moment... This is who we are... We are Moms... Our children bring us gifts every day.

My childrens gifts are...

Every morning when Baby Boy awakes, he gives me this look- this wide eyed joy mixed with surprise.  He sing songs my name in the falsetto that only a three year old can get away with.  It's almost as if he has missed me- like for the few hours that he has been sleeping, I've been gone from him forever... It is so sweet and touching... That is my Mothers Day gift from Baby Boy... Every day...

With Bean, it's more subtle... She is like an Ivy, a vine... She intertwines her fingers into mine and pushes her head deep under my arm... sometimes silent and sometimes a very quiet and low pitched "Mommy"... Sometimes, she will even kind of wrap her leg around mine... It is so comforting and natural, like this the way it always should be... That is my Mothers Day gift from Bean... Every day...

Am I sad that I didn't open a pretty gift or a card on Sunday?  Am I sad that I didn't get treated to a special dinner on Sunday?  Am I sad that I didn't get to put my feet up and relax?

NO!!!

I have Mothers Day everyday, and I wouldn't change it for a thing...

Reasons Why I Love...

Reasons # 3,663 and 1,413... Bad Parents?

Reasons # 3,663 and 1,413... Bad Parents?

My child is not potty trained.  My child is not reading on grade level.  My child has trouble interacting with others.  My child used a curse word.  My child drew on the walls with permanent marker.  My child was not nice today.  My child forgot to brush her teeth.  My child wrote her letters backwards.  My child, who is normally respectful, was disrespectful today.  My child threw a toy.  My child won't eat vegetables.  my child only eats white food.  My child wants to call me by my first name.  My child pulled the dogs tail.  My child didn't share.

Every time I read these things, it is (almost) always followed by...

"Am I a bad Mom?  Am I a bad Dad? Am I a bad parent?"

Then, I read stories in the news...

I left my child in the car so I could go to a strip club.  I allowed my boyfriend to abuse my child.  I sold my childs innocence for drugs.  I burned my child with cigarettes.  I shook my child because he was crying too much.  I threw my child off of a building.  I drowned my child.  I burned my childs eyes with bleach.  I locked my child in a cage.

Every time I read these things, it is (almost) always followed by...

"I'm a good parent, BUT...'

For my fellow Moms and Dads out there... Remember, being a GOOD parent means being invested.  Recognizing that your child is having a bad day or a bad reaction. Being there and acknowledging that something is right or wrong, or even just a work in progress...

You are there.  You are in the moment.  You are nurturing.  You are seeking resources.  

YOU ARE A GOOD PARENT!!!!!!!!!!!

Don't ever forget it...

Reason # 3,655

Many times, I just have no idea what is going on in my little hoarders head... She collects... VERY random stuff... Obsessively...

Lately, her obsession has been the little red sticks that come in the cheese and cracker snack packs... She has about eight so far... 

They drive me crazy and I've dreamed of just throwing them out...

Today, while driving in the car, she asked me what I thought that she was going to do with the sticks. I threw out random answers:

A Chair. A Dollhouse. A tribute to Justin Bieber. Something Pokemon related...

She told me...

"Mom. I'm gonna build a house and I'm gonna sell it for charity."

I have no idea how she is going to build a house or what charity it's for, but, bring on the freakin' red sticks!!!!!!

Anyone want to buy a stick house??? The bidding is open...

This is why I Love This Girl More Than Life!!!!!!!!

Reason #3,655

Reason # 3,651 and 1,401... Hug your kiddos close...

When we become Moms, we open up this deep commitment to be the ultimate person that our child depends on. We are 'IT'.  We are the Alpha and the Omega.  We are their Warrior.  We are their ultimate Advocate.

Our children become our Alpha and Omega.  They are our Essence.  They become intertwined with our Souls.

We evolve, our spirits become One, we are involved in a bond that cannot be seperated.

Nothing is supposed to break that bond...

The idea of being faced with our childs weakness, sickness, mortality is gut-wrencing...

That is not what we are imbedded to do...

We are coded in our DNA to teach and love and mentor and support and guide...

When we are faced with opposite of everything that is in our human nature to do, it is devastating...

I almost lost Ellie, and that date, that moment, that instant will forever be imbedded in me.  It makes me fight and love and cherish every moment...

When I see a Mom who has been through that, my heart reaches out to them...

When I see a Mom who has been going through that for over a year, my heart breaks...

When I see chatter of 'making things comfortable' and 'making decisions', it makes my very being shudder...

Tonight, I hug my kiddos a liitle bit closer and I send out as much love and as many prayers as I can...

Our kids are LEADERS

http://www.youtube.com/watch?v=rjjeHeAzZZM


I've seen so much chatter online over the last few days about this movie. 

I'm alarmed at how many parent comments run along the vain of "It's just a movie and it won't make a difference", "Kids are kids and that's just the way it is", "Those kids should just suck it up", "This kind of stuff will help them accept life later", "This is who they are, they need to just put on their big boy pants.", "This is just a marketing tool"...

Really????

Really???

Have we become so jaded and overwhelmed in our society that we have forgotten to teach our children?
That we allow them to just succumb to peer pressure with no consequence?
Do we allow our kids to just 'go with the flow' because standing up will, maybe, cause them to be the subject of an uncomfortable situation?
Isn't our responsibility to teach our kids to be LEADERS?
In their classrooms, in their community, in their personal lives and and personal accountability?

I am proud that I stand up for my child and I am even more proud that my child stands up for others...

I don't often ask friends to share, but...

If you agree with my words, please like and share...

Because it is important that we raise leaders and we stand by them...

xoxo~K

Reason # 3,637... Alternate Title... What Do Words Really Mean...

Reason # 3,637... Alternate Title... What Do Words Really Mean...

During my pregnancy with Bean I was given many words and terms...

Polyhydramnios.  At Risk Pregnancy.  Level 3 Ultrasound.  Trisomy 18.  Bed Rest.  Be Prepared.  Unknown.  

Some of these were words that were in my vocabulary.  Some were newly introduced...  I took them all in stride.  The words that were unfmailiar became a new part of my vocabulary... I was ok...

On the day that Bean was born, I was given more words.  Different words...

Emergency C-Section.  Syndrome. Treacher Collins.  Compromised Airway.  NICU.  Pulse Ox.  Trachetomy.  NG Tube.  Failure to Thrive.

Again, I knew some of these words, and the rest became part of my new vocabulary...

What I did not expect was that words that I 'knew', that had been words very familar in my life, would first have meaning...

Unconditional Love.  Joy.  Awe.  Beauty.  Comfort.  Stregth.  Reality.  Whatever the word is that describes how your heart just melts when you see your child for the first time...

These were words that I had been taught, I 'knew' what they meant... But for the first time in my life, I FELT them...

I looked into these incredibly dark brown eyes that had a wisdom in them that spanned the universe.  These eyes that had been open for less than 24 hours, yet held the key to every emotion in my heart.  Looking into these sage eyes, I saw limitless opportunity...

Over the years, I've learned new words.

PT.  ST.  OT.  IEP.  911.  Advocate.  Protector.  Too many medical terms to list...

But, the first words that I felt in that moment are the ones that are most important...

Unconditional Love.  Joy.  Awe.  Beauty.  Comfort.  Stregth.  Reality.  

These are the words that I knew.  The words that I had learned in school.  But, until I felt them, I never really, truly, knew them.

I gladly add words to my vocabulary... Words that I knew before, but could never really define until they were real to me...

Awesome.  Rockstar.  Salvation.  Absolute.

This is my girl, my 3,637, The Reason Why I Love....

Happy Birthday Beanie!!!!!!

Reason # 15,330... Alternate title... Sometimes it sucks to be a Mom...

Reason # 15,330... Alternate title... Sometimes it sucks to be a Mom...

Don't take that title the wrong way.  I LOVE being a Mom.  I LOVE my kiddos. I wouldn't trade my life for anything else in the world...

My kiddos are my greatest source of joy and inspiration.  Being a Mom is the most amazing thing that I can be.  It is my calling and my destiny.  I was always meant to be the Mom to these incredible Littles...

But, sometimes, it really sucks to be a Mom... To have to make decisions and choices, even if they are out of my control, that will be difficult, impossible, for my kiddos to understand.

It's always in their best interest, but, sometimes heartbreaking none the less...

I will not go into detail why,because, at the end of the day, the reason is less important.  It is what it has to be and I need to deliver the news...

We have decided to move Ellies surgery in Cinci closer.

This will result in her losing the end of the school year with her friends and teachers.  It will also mean that she will lose the rest of the Dance year...

I hate to put so much focus on her dance classes because I don't want to sound vain, but this is so important to her... This has been a source of structure over the last several years that has allowed her to gain confidence and form friendships.  She has grown, both physically and emotionally through the classes she has taken, her teachers and mentors and the bonds with her classmates... She looks forward to recital like a trophy, a victory, every year...

I need to tell her that she will not be able to do recital this year, even though she was given a solo spot in her performing company.  Even though she has practiced and done well.  She has a competition in two weeks and I have to tell her that will be her last performance this year.  She will not do pictures with her company this year.  All of the costumes that she is looking forward to wearing will hang in our closet like a ghost, a bitter reminder...

This, after taking away swimming and aftercare and sleepovers and playdates and her beloved ASL Club...

This is why, it sometimes sucks to be a Mom... Because I'm the one who has to have these conversations with a 9 year old... The 9 year old who totally trusts you to make these choices and will have no frikkin' idea that this is the best call in the long run... A 9 year old is only living in the here and now, as it should be...

It just results in the 9 year old hating you...

Being hated by your child sucks more than anything else in the world...

Reason # 15,330... Sometimes it just sucks...

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