Halloween 2011 in Pictures.

Despite the picture documentation, I did attend these activities...I even dressed up to the last one.

We like our family and friends.

And, Deak really likes the candy bowl.



Time.

Building a relationship with Abby is not easy.
She has just got this solid exterior, and it takes a lot of work to crack through and figure her out sometimes.
It is labor intensive and time-consuming...
But trust me, if you put forth the required effort, it is infinitely worth the reward.

I took her to Chili's tonight.
Deak took his first step, and for some reason my heart needed to share that moment with her.
She was so excited and said he will "walk in January, because that's when he likes to do things."
I love the way she believes in him.

She likes being with just me.
I like being with just her.

She chatted about her class, her best little friend and a girl who "gets into everyone's business." 
She expressed concern over the choice her friend made to share her "crush" with the "nosy girl" because she is certain she will tell him (I told her she was right.)

I found out two boys like her, and I can tell she is kinda stoked about one of them, though she will go to the grave before admitting it aloud.
She said that when the nosy girl told her he liked her, she replied "Gross" and the other dude never had a chance because he is a BYU fan.

She said the "nosy girl" likes the boy who likes her (Abby).  I told her to watch out for girls like that, because girls can do some mean things about boys.
She nodded her head, but only to appease me.
She knows she can take that girl any day.
Mostly because she just doesn't care.

I talked to her about my first crush and the pukka shell necklace he wore to school everyday.  He asked to be my boyfriend right before my parents told me we were moving to Utah.
I was crushed.

She giggled.

My heart was filled to the top with gratitude that I got such a dang good kid.  I am so unbelievably proud of her. 

My first baby, born with an old soul.

As we walked out of the restaurant, a couple of boys that looked to be around her age elbowed each other and watched her walk around the corner.  She turned her head, looked their direction, then up at me, and smirked.

I asked her if she knew them.
She said, "No" with a smile.

Man, we are heading for trouble.

My invested time tonight was repaid tenfold.

(Dressed in self-proclaimed "Utah Colors" to church after the beating they had against BYU:)

*PS...mention this post to Abby, and you will pay deeply...

One Little Step.

I wasn't sure Deak was 100% today, he wasn't terrible, but just kinda seemed a little off.
I cruised in the door from work, snagged he and Abby and began the trek to Shriner's for our biweekly physical therapy appointment.
I walked inside Shriner's carrying my 40 lb little big dude, because I did not have time to think about putting the stroller inside the car, and made it a mere five minutes late.  Which is pretty much considered "on time" in my world's clock.
Mark, Deak's therapist, set up an awesome game with a real bowling ball and pins to encourage Deak to stand up from a sitting position and move his body forward, stepping if necessary.
Deak was a butt head.
He screamed bloody murder for the first 15 minutes, the only exception being each time the ball hit the pins and made a crashing sound.
Deak's therapist and I questioned his health and wondered if he just wasn't going to be into tonight.
It totally sucks when Deak isn't "into" it because it is such an investment of time and energy just getting there.
I was ready to be done.
I know I've done it a million times, but I don't care what kind of steel your awesome mom suit is made of, a screaming child can only happen for so long before your heart just hurts.
Deak's therapist said, "Let's just try one more thing."
I reluctantly agreed, already having moved closer to Deak in an attempt to pick him up and carry him home.

Something changed.
Maybe the new toy, maybe Deak's choice to give in rather than fight...
Whatever the reason was, he decided to cooperate.

Deak sat in his little red plastic chair, stood up and grabbed the table to stabilize himself in order to play with the toy the therapist had placed just outside of his reach. 
He made it easy at first...
and then gradually pushed the chair back....

Deak is no dummy; He'd instantly recognize when the chair was placed to the point where his arm span could not reach the table without movement forward.
Then, he'd whine about it.
And then he'd turn his little head towards my direction and his eyes would look at me and say, "Really mom?  Really? You're going to make me do this crap myself?"
Mostly, he gave up.

But, then....he didn't.

He stood up, quickly stepped forward with his right foot, and then grasped onto the table as if he was holding on for dear life.

One little tiny step.

One little tiny step that I was told he would never take.

One little tiny step that stole my heart and stirred my soul.

I turned to the therapist and said with welling tears, "He did it.  He took a step.  That was his very first one."

The therapist's smile may have been bigger than mine.

I am realistic about this step.  I understand it will take time for this little beginning to become a big ending.

But this ride...this ride of hope that this boy has brought me on...is worth every single second.

My boy can walk.

He.can.walk.

 (The first time I saw him)

From this...



to this.

*I am still doing the private thing...when I have some actual time (It's kinda a pain).

Private.

I believe really strongly that one's instincts or "gut" tends to pull you in the right direction.
And, I learned a long time ago, that in my case, I always need to listen to those instinctual promptings.

Lately, without any factual base, my gut is telling me this is what I need to do

My purpose, other than to document my little family's history, has always been to enlighten "the world" via Deak and his message of hope.  I believe I can still do that in other ways, most significantly through his Run for Hope (2012 date coming soon), and my relationship with the Chromosome 18 Registry and Research Society.

There may be a time when I stop being private.

But, for now, I need to be.
I'm happy to share my little life with any and all of you, if you are interested.  Leave an email in a comment, if you feel comfortable.  Otherwise email me at jehowe@gmail.com.

Until then...

Letting Go.

Deak is big (and by big, I mean really getting huge)...

But, he is still my baby.

The same way Abby is still my baby, and will be forever.

We were given the "go-ahead" from Deak's neuro-surgeon to begin physical therapy again about a month ago.  I was ecstatic to find out that we were able to get into the highly sought-after physical therapist at Shriners, and was anxious to see if any leg strength was apparent after our tumultuous tethered spine surgery experience. 

Last Wednesday, Deak and I made the trek downtown after a long day of work and school.  It is tiring to go to physical therapy at 5:00; tiring for both of us.  Deak has been working really hard on "breaking gaps," meaning that he is working on cruising and walking in between spaces that don't continually run together (ie. the couch and coffee table).  Deak has only been to three appointments in the past month, and during the first appointment, he dared not even walk the "gap" of about two inches.  It scared him to death. It is so interesting to watch his amazing little brain process the situation:

           He stands along the bench, notices the gap, bends down to look very closely at the gap, takes one arm off the bench and measures how far he will need to venture in order to cross the gap, bends his knees and thinks about getting down and crawling between the gap, and then eventually decides to cross it. 

The entire process, at first when he is evaluating the risk vs. reward, can take quite literally five minutes. 

Deak is just too smart.  

Most children, when they are learning to walk, have not progressed to the stage cognitively where they are able to compute such a high-level calculation.  They just do it, without fear for the consequences.  Deak isn't there. He has fear.  He knows it hurts if you fall, and he doesn't like to fail.

After only three appointments (and practice at home), Deak is now confidently walking (without his walker) in between gaps upwards of 1 1/2 feet.  Another inch or so, and the boy is taking steps on his own.

Deak's therapist, Mark, has been gently "chastising" me.  He is constantly reinforcing the abilities that Deak has and reminds me that I need to let him fall once in a while.  Last week he actually said, "Jenny, Deak's legs are strong enough to walk now; that's not what is holding him back."

Yep, I am.

I know he is right.

But, how do I let go?

He already has so many things in life stacked against him, sue me if I want to catch him and carry him a bit longer.

Plus, that damn walker is NOT easy to carry around and walk inside of in the real world.

Since our appointment Wednesday, Deak has nearly stood up on his own two feet from a sitting position and was sosososososo close to taking an independent step after balancing on his own two feet for a few seconds in front of the couch.

So, close.

The walking stage is coming for us. 

The stage I've hoped and dreamed and prayed for.

I just need to let him go.

 Deak's crazy new favorite position.  He does this ALL DAY long.

My attempt at following the therapist's advice and allowing Deak to "walk" in the real world.

It was hard work (for all of us - Abby is a rock star helper).

But, it was empowering.

Deak complained a bit about it, but I think he also enjoyed being able to randomly take off and walk to wherever his mind determined he wanted to go.  Deak was very cautious at first, but I knelt next to him and told him that he could do this. I told him he was a "big boy" and could walk now, and he needed to push through.

He looked at me, smiled, and gave me about ten big kisses on the lips in a row.

Man, he is growing up.

Balance and Peace.

I began graduate school about six weeks after giving birth to my beautiful Abby.
She was so tiny.
I was so scared.
I worried that the life plan I was following was not in alignment with what appeared at the time to be every single other woman's plan. 
I worked full time as well, for the Department of Youth Corrections; a job that demanded a lot of emotional and physical energy. 

And so began my balancing act of wife, mommy, full time employee, counselor and grad student.

We all survived. In fact, when I look back to those years, I only remember the good stuff:
...the way Abby crawled on all fours with her bum in the air while in dresses...
...her first word, "Hi"...
...the way we had to rock her to sleep as if we were inside a mosh pit at Salt Air...
...the love that grew for those students I worked with within the school-district's "At-Risk" program (I left a piece of my heart there)....
...the way Abby would lie on Blair's stomach while they watched "Jay Jay the Jet Plane" together at Midnight...
...our first "friends with kids"...

Not much has changed in the past 9 years, with the exception of becoming a mommy x2 to a special little Ring dude, and graduating with my Masters Degree.

It's just basically life.
It requires balance.
Some days my scale is jacked up, teetering heavily on one side versus the other...
But really, most of the time it evens itself out.

Lately, I've had some experiences professionally that have touched my heart so deeply, that it's as if the student's purpose is divinely connected to figuring out my own purpose.
You know, one of those, "Yep, this all makes sense" types of experiences.
I just love that student.

There is so much power to be found once you have recognized your purpose.  Culturally, it is often defined solely as motherhood...and without a doubt I agree that first and foremost, much of my purpose lies within their little souls.
But, I think we are capable of more.
Not that it is necessary, but I feel it is achievable.
I feel such gratitude for the choice I made, as difficult as it was, to receive an education in an area that does not necessarily scream "wealth," but fills my soul with the kinds of riches that I can't receive elsewhere. I feel so immensely grateful that I love my job.

I feel grateful that I am able to help offset some of our life's little financial surprises (ahem..ahem...Deak).
I feel grateful that I have a little girl who, when playing house with her friends, leaves for short periods of time to "meetings" and comes back to her playhouse a happy mother.
I feel grateful for a little girl who aspires to obtain higher education and feels confident in the fact she will be able to do so...because she's watched it happen before.
I feel grateful that when contemplating aloud the idea of accepting a job teaching graduate school for four hours a week, my sweet Abby gives me her little one-eyed look and says "Mom. You should totally do it."

I just feel grateful.

So, my little internal scale, may look a little shifted to some...but, to me...it's just right.
I am finally at peace with that.

Does that mean the balancing act disappears?
Never.
But, I've found my juggling skills are a hell of a lot better when my footing is solid and my heart is at peace.

Believe.

I find myself slipping and sliding through, for lack of a better term, a "funk" lately.  I've ranged from feeling incredibly blessed and hopeful, to contemplating how little I'd be missed if I just attempted to continue driving rather than take my exit on the way home from work.

I know, sounds extreme right?

Extreme, but honest.

I don't have a life that is easy.

Who does?

And, although there have been times when I have deeply envied the "normal" picture some families paint, I do really understand that "hard" is relative.

My realm of relative is just that...my own.

Hard things build character (so they say), and contrary to some public opinion, I'd like to think I have developed some strength of character.  I'd like to think that although my beliefs may not always directly align with others, I can at least get some credit for honestly sticking to them; even when it's not popular.  I'd like to think that although I complain and stress out and overwhelm myself with self-induced responsibilities, that most of the time my priorities are clearly visible from strangers across the room.

I am sitting in my office today thinking about a good friend; and by good friend, I mean amazing human being.  She is just the kind of friend who freely gives and gives and gives. From vacuums, to midnight text replies, late night drives and even a 12 pack of diet coke delivered to my son's hospital bedside. 

I am lucky to have her in my life.

As my heart breaks in conjunction with hers, selfishly I've used her example to gain insight into my own belief system.

What is our purpose? 

What do I want my children to know I stand for?

Why do I stop the negative thought process, turn on my blinker and exit instinctively?

Interestingly enough, I created a bulletin board in my office very recently entitled simply,"I believe..." 

I guess I wanted my little-bodied friends to leave my room getting a glimpse of what I do know for sure.

I believe...

*"It is our choices, Harry, that show what we truly are, far more than our abilities."

Professor Dumbledore

*It is essential to understand that battles are primarily won in the hearts of men.  Men respond to leadership in a most remarkable way and once you have won his heart, he will follow you anywhere."

Vince Lombardi

*I've learned that no matter what happens, or how bad it seems today, life does go on and it will be better tomorrow."

Maya Angelou

and lastly,

*"We judge of a man's wisdom by his hope."

Ralph Waldo Emerson

I guess if I limit my often misused fortitude for lengthy discourses on irrelevant subjects, that's it.

That is what I believe.

That is what I will continue working on strengthening within myself and my children.

And,that is what I will deeply breathe in while I push forward today.

One day at a time.

Labor Day Weekend in Park City

This has become a tradition that Abby looks forward to more than anything throughout the year.  We love going, together with my family, to a beautiful condo encompassed in scenery that we often take for granted living in our state. 

I tried my best to relax this weekend, which meant I did not stress about picture taking.  I did get a few shots on my iPhone and a couple really pretty ones with the fancy camera that I do not know how to use.

SilverStar Condos, our home for the weekend, and a big sponsor of Deak's Run for Hope

The people who make this fun weekend possible...

We are feeling renewed, rested and anxious to begin our week.

I know it has been a good weekend when I can make a statement like that at the end of it.

I have big kids.

I guess I am at that stage.

The "I don't have kids at home much anymore" stage.

Am I really that old?

Such a large part of my heart left with my two babies this day.  Blair and I dropped Ab and Deak off at school, just two doors apart from one another, and then went on our way.  All of us in separate places.

It was surreal.

Our morning routines have been adjusted to accommodate two little bodies getting up and ready each morning, and I am learning to really love waking up early enough to enjoy our morning together at an un-rushed pace.  Blair and I have been working together to adjust for early morning meetings and after school carpooling, and it is going as smoothly as juggling four crazy schedules can.

We kinda know how to handle crazy in our house though.

So, far Abby is loving her new teacher.  She is a proud Ute fan and has to be one of the most understanding and kind teachers I've ever met.  That is exactly what my Abby needs this year.

Deak took a week or so to adjust to a new class and schedule.  He loves computer time and writing lines at his desk, and will soon figure the rest of this school business out.  His teachers are kind and loving and have done an excellent job of communicating Deak's progress to me.  Abby gets to see Deak at school; sometimes at recess, and sometimes in the hallway or at assemblies.  She tells me each time she sees him, he looks at her a little strangely, then immediately claps and smiles.

I feel so happy that they have each other, and so happy with the choice we all made to have them attend school together.

We will make this an awesome year.

Craziness and all.

Good Things.

Phew.

It's Friday.

And, it is a 3 day weekend.

In honor of the rough week, and despite the fact that my last post was written with a less than stellar attitude, I am taking a really, really long deep breath and focusing on some good stuff.

Because when I choose to focus, I quickly realize the "good stuff" is flowing thick...

*Bath time with Deak:

        If anyone in the world needs cheering up, feel free to stop by and join us around 7:30 most school nights.  It is delightful, and you will hear the kind of joyful laughing that seeps deep down inside your soul.  My Deak loves, loves, loves the tub, and I love, love, love it too.

*Abby getting older:

       Okay, so maybe this week it has been not so much of a good thing, and quite honestly I am scared to death of screwing her up for the rest of her life...but, the getting older thing, as heartbreakingly sad as it is at times, does have it's perks.  I love that we now like similar TV shows; Top Chef Just Desserts, Keeping up with the Kardashians (though that one has required a bit of editing from time to time) and the classic...Real Housewives of New Jersey.  We debate over dessert favorites and ugly cake decorating, discuss how Kris Humphries isn't as big of a doofus as we may have presumed while he played for the Jazz and dissect the different levels of crazy associated with each housewife (Sorry, Teresa G....I used to love you, but you are winning the crazy vote this season in my house).  I like Abby's rational, cute, mom-pleasing moments and I am treasuring them.  Abby has also handled the adjustment of changing schools, walking to/from most days and making new friends better than most adults; in fact, she was even invited to a birthday party the first week of school.  It made her whole entire week.

*Deak's Legs

         We received a note in Deak's school log yesterday stating that Deak had stood on his OWN. He has done this, albeit very cautiously, at home for a few seconds with more stability lately...but, not anywhere else.  I was so excited to hear that he is generalizing his ability to be strong on his legs into other environments.  Deak has also (in conjunction with his knee hopping) began knee walking; he quite literally looks like he is walking around on his knees.  He is so dang close!!  He just needs to work on his confidence level and his ability to balance.  I was able to get him into a physical therapist at Shriner's Hospital that works later hours (and is the one I have wanted for the past three years:), and we begin therapy again in two weeks. I am anxious to see what that little guy is going conquer this year.

*Baby-Sitter's Club Books

           I have a couple of boxes of these priceless gems (somewhere actually around 100). As an eight/nine year old, I would zip through a book in a day, and dream big dreams of being like Stacy (the pretty popular babysitter) and living in StoneyBrook, CT.  Abby is almost finished reading Book #1, and the nostalgia is in overdrive.  It as almost as nostalgic as the TigerBeat (or something like it) magazine I bought Abby who then promptly resigned herself to reading it cover through cover while lying on her bed and listening to Selena Gomez last week.

*Food

 I just like it.

*Utah Football

      It's back.  I love the games, I love the hand-dipped corndogs and I love the time spent doing something fun with Blair. I also love the new Utah line Victoria's Secret has out, and I love the cute new sparkly Ute earrings Ab just got.  I have to say, I do NOT love the quarterback (Jordan Wynn) or his pornstache, or his ridiculous hair.  I kinda hope he blows out his shoulder again (and I mean that in the nicest, least painful kind of a way).

...the end...

I feel better already

Days like this...

So, ironically enough, I felt like I've had "it" together lately (whatever the hell "it" is).
You know I've...
worked my 40 hours.
played Taxi-Cab mom.
made dinner nearly every night (real dinners, not even canned chili and Frito's).
done Homework.
went to Back to School Night.
scheduled new therapists at Shriners for Deak (for free, Yay!)
attempted to budget by not buying lunch ever (which includes starving some days).
made cookies, and pies and breadsticks...the domestic stuff that makes me feel like I fit in with the local culture.
taken the kids to do fun things and even planned a little get-together for Blair's Birthday.
I really have done my best to "do it all."
I can do it all.

But, still.
I am missing something.
I feel helpless today.
And, for me...there is no feeling in the entire universe that makes me feel worse.

I just want to be a good mom. Honestly. That's it.
I want to be good at all the other stuff too, but it just doesn't matter as much.
Today...I feel like crap.
Crap.
Period.

Sometimes, it comes back.

Grief.
Not often anymore, in fact...not hardly ever.

But, there is something about milestones that does it for me.
My baby boy is going to Kindergarten Monday.
Monday.
I can't even type the sentence without streaming tears.

I don't know what the big deal is.
He has gone to school for the past two years nearly every day.
I wish somebody would clue my heart into that rational piece of information.

He is going to have the most wonderful teacher and the most wonderful classroom environment (the mama bear did what she needed to do to ensure that months ago), but still....kindergarten?

Man.

Deakon was invited to his mainstream classroom's Kindergarten Orientation Monday.
I don't think I can do it.
I've stood by his side in pain, held him on my lap while he struggled to stay alive, and watched him endure an endless array of doctors and pokes and needles...
but, I don't think I can do this.

I have surrendered to the acceptance of Deakon's pathway in life.  I genuinely embrace my boy for who he is and look forward to watching him grow and continue to exceed the expectations of others. 
But...
there is just  something about sitting in a traditional classroom with 20 or so little five year old bodies; bodies that effortlessly move and talk and even breathe.  A body that I pray every single night I am living right enough to get to someday witness in my son. 

My heart aches for the day simple things become effortless.

There will be handouts and discussions about homework and parties and classroom rules, and quite frankly, I will be lucky if the Deakster stays still and quiet for five minutes of the discussion (rules aren't really his thing.)  I feel torn between pushing myself (and others) into focusing on the plethora of things that make my Deak similar, and defending Deak's differences and allowing his overall happiness to override and take precedent.
I feel like I don't want to do either.

Does this emotional rollercoaster get easier?
Yes.
It most definitely has.
But, sometimes it still hurts too.

Ten Toes.

"He is missing some toes."

For some reason, during the midst of learning our son, whom we had grown to deeply love at 22 weeks gestation, was at best going to struggle with significant health issues throughout his then determined short life...that one sentence resonated and stomped on the pieces of my freshly broken heart.

Ten fingers. Ten toes.

Something most doctors quickly celebrate and joyfully proclaim to the beaming father and teary-eyed mother upon first meeting their precious, newly-birthed baby.

I was cautiously joyful upon Deakon's arrival.  I believe a mother can only hear "Your child is not going to live" a couple of times before trauma sets in. As the doctor and his partner were preparing to deliver Deakon, via c-section, I heard my doctor whisper to the other, "She is preparing to have a handicapped child."

Wow, I thought my heart was broken before.

Deakon was blue when he was born.  He didn't cry quickly like other babies.

I didn't get to even touch him.

The nurse whisked him away to be prodded and poked and hooked up to tubes, and my heart stood still.

As she came back into the room, and while the doctors were fixing what they discovered to be a pretty severely damaged uterus (thank you placenta previa), I became fixated on one thing...his toes.

"Did you count his toes? How many does he have?"

Why didn't anyone tell me this? Isn't that what they do?

The nurse, sensing my panic, (as irrational as it must have seemed considering I wasn't even certain Deak was breathing), ran out of the room promising me she would go count and let me know.

Within minutes, she replied, "He has ten toes. Ten. A couple of 'em are just kinda hiding in the back."

Even as I write this, I feel the warm rush of relief run through my veins.

I knew it.

He was going to be okay.

I was not able to see Deakon until my doctor saw me back inside my hospital room and realized no one had taken me to the NICU.  He barged in there, pushing my bed and told the nurses I needed to see my son.

I did need to see my son.

I took one look at him, very much oblivious to the monitors beeping and tubes through his nose and IV taped down to his skull, and felt joy.

"He looks like me," I said aloud.

I noticed others' eyes in the room turn downwards in pity, clearly seeing the differences in his nose structure, noticing the eyes a little more widely set and thin, flat eyelids.

Not me.
I saw the ridge of his forehead and his face shaped more oval than Abby's.  I saw his blue eyes and blond, blond hair.

I did not see DNA splattered with Ring Chromosomes.

I saw me.

He was mine.

He had made it, and I loved him with my entire soul.

Today I was feeling really sorry for myself.

And actually, yesterday too.

I think I have too much time for thinking on my hands; and me and thinking time are not friends.

Plus, I haven't been sleeping.

I just can't.

I sat next to Deak and his mattress island of fun, while feeding him some corn dogs and thought to myself, "I'd really love to have normal problems - like what to make for dinner, or making time to go to the gym."

Not that I don't have those problems, because I absolutely do, I am just craving normal.

Normal. Normal. Normal.

I think my heart is running on fumes.

Then, I saw these.

My boy's perfect toes.

All of them.

I love the way they stick together and push the one out in the middle.

I saw them and I remembered.

I remembered the sharpness of the pain that I felt at the thought of never having the opportunity to kiss those little feet.

And, everything became better.

How could I allow myself to wallow, while my Deak has been the one who has endured?
He has handled this life with happiness and gratitude. 

Gratitude to just be him, and to just be here.

I feel like I constantly have to learn this lesson of acceptance, and on dark days, it can still ride a low tide.
But, not anymore today.

How grateful I am, to get to live with this boy whose patience re-teaches me over and over and over again.

I am grateful for those ten toes and the spirit of truth that has come with them.

 I am grateful for a Lord who believes I have the strength to watch those toes grow old.

Disassociate.

I was watching Celebrity Rehab last night. I love that show; not because I enjoy seeing people struggle, but because I am fascinated and passionate about what fuels ones' hope.  What must we uncover about ourselves and our true intentions before allowing ourselves the opportunity to belong and feel loved?
I know, strange that I look for the answers to those questions via Dr. Drew and a few b-grade celebrities...but, I've never been one to discount an opportunity for self-analyzing. 
Professional hazard.

Dr. Drew, during a group session, discussed the term disassociation.  He described disassociation as an unnatural defense mechanism, learned by survivors of trauma, as a way to cope with the intensity of the hurtful experience they are going through. 

Hmm.

I used that word Friday night while talking to my sister who had come with dinner and a fresh set of legs and arms, willing to hold the Ipad above Deak's head while he cried and whined in agony.

I casually mentioned to her, "You just have to disassociate yourself from this" (this referring to the screaming boy lying on his hospital bed) and I left the hospital room for the first few minutes in about 30 hours.

Disassociate.
Is that what I do?

I've been through heartache before. I've been disappointed, hurt and frightened for my own future.
But, nothing in my life,
Nothing...
Compares to the pain experienced sitting helplessly on the side of a hospital bed, next to my son whose inconsolable cries could not be comforted by even the combination of Morphine, Loratab, Toradol and eventually Valium.
His eyes, swollen from his tears and irrational from the strong combination of narcotics, I could not bear to look into for more than a few seconds. 
It just hurt too badly.

In a quiet moment without nurses, at 4:00 in the morning, I leaned in from my chair at the side of Deak's bed, seeking what hindsight tells me was most likely forgiveness.
The guilt of choosing this surgery, even under his neuro-surgeon's recommendation weighed heavily on my shoulders, and I questioned my decision over and over and over again.
I sobbed my apology to my boy.
I told him that I would do anything to take his pain away.
I told him stories of Lagoon and Bulgy the Whale and the Lady Bug Drop.
I told him how much I loved him.

After a night's sleep that consisted of about 45 minutes, and about 36 hours of listening to my boy's cries, not able to pick him up and hold him (due to restrictions from the surgery), I no longer had the strength to be present emotionally.

I was there.
But, that trusty suit came on and I held him down with the nurses while they cathed him, and comforted him while he hit my arms in anger, and pushed a continual onslaught of buttons on the preschool matching game on his Ipad because his arms were too weak.

I stuck my heart in my pocket and pressed forward, only allowing it brief reappearances on a couple un-planned occasions; one being a momentary encounter with a hospital social worker.

She happened to walk into Deak's room during an especially difficult inconsolable period, and she pulled me aside.
She asked if I had slept
(No.)
She let me tell her my son's story and the medical error that had precedented much of this cycle of hurt. 
(The anesthesiologist gave Deakon 5x the dose required for his surgery, which inevitably lead to an conscious extubation and a tremendous amount of pain due to the fact that they could not give him any narcotics *except a minimal amount of Morphine* until he was conscious and breathing on his own).
She told me, while watching Deakon shriek, kicking and flailing his arms and legs, that what I was going through was difficult.
Then she told me she thought I was amazing.
I turned in response to her comment and said, "Well, I don't think I'm that amazing."
Because never, ever in my life had I ever felt so helpless and weak.
This woman, who I've never met, nor will ever see again, then turned to me, looked directly into my eyes and said, "Well, I know you are."

Validation.
Validation, even from a stranger only briefly sharing your experience, can be so powerful.

Maybe that's why I'm writing about this today.
Maybe I want other parents who are experiencing hard stuff to know that going through surgery (or any kind of hard stuff) with your child is not something to be tracked, or counted, or boasted about.
I hate it.
It is hard.
It hurts like hell.

And, it's okay if we disassociate for a while, because we have been through things with our children that no parent should ever have to experience.
It may not be "normal," but we need to survive.

And, you know what else?
We are pretty damn amazing.
All mothers are.
Even if we need help recognizing that most of the time.

My sweet boy, five days later, is downstairs recovering on his little mattress in front of a big screen TV that has played "Yo Gabba Gabba" or "Go Diego Go" around the clock.  He is smothered with toys and is feeling well enough to control his beloved Ipad and enter and exit out of games faster than a hyenna on meth.  The actual surgery to release his tethered cord (cut the ligament holding his spinal cord downward and putting pressure on his nerves), was extremely successful and proved to be more necessary than we anticipated once the surgeon actually got in there and saw the size of the tendon.

He will recover faster than I.
And, I am perfectly okay with that.

My sweet Abby holding her Deak's hand while he cried.

Abby's Friend Birthday Beach Party

Abby and I had a lot of fun planning and prepping for this "Flip Flop" party.  She wanted to invite lots of friends, so we chose to have the party at our "at the time" (Grandma's) home.  Although birthday parties tend to stress my perfectionist self out (especially two days before Deak's surgery), I think everyone had fun and it turned out pretty cute.

We stressed about the rainy weather until miraculously, two minutes before the party started, the sun began to shine. 

Perfect weather for a pretty perfect kid.