Displaced.

Sometimes I really hate my degree. Six years of school left me with the natural tenancy to over analyze and think, think, think.

(Not that I was born with that tenancy at all....HA!)

With this education came all sorts of terms and definitions:

Repressed

De-escalation

Subconscious, Ego, Id, Superego (Thank you Freud)

...Displaced...

Specifically, displaced anger.

It has found a home in my body this week, and it is an ugly and messy house guest.

I am angry I have to make decisions NOW.

I am angry I will have to deal with giving myself and Deak a shot everyday.

I am angry those shots cost money.

I am angry that my right hand cannot tie the freaking ribbons around the buckets I am creating for all 49 of my classes.

I am angry that I cannot get my son out of the bathtub without the fear that I will drop and hurt him.

I am angry that my shoes don't always love my right foot anymore.

I am angry my right shoulder, neck and arm have been in pain for 24 hours.

I am angry that even if I sleep ten hours at night I still feel as if I am hungover in the morning.

I am angry I keep visualizing my MRI with the big lesion on my brain every.single.night.

I am angry.

But, I don't tell you that...

I tell you I'm fine, and managing, and things are coming together nicely.

Which is true when my mind is visiting better places.

But, for today and most of this past week...my mind has been visiting Iraq (which I am only assuming is not an ideal vacation spot).

The "displaced" part of this anger comes in several forms (sorry Blair), but is most noticeable when anyone (and I mean anyone) complains of any type of health issue.  The irrational thought process sounds a lot like this:

A random person is on the news complaining about the flu...suddenly I get a strong urge to stand up, punch them in face and say, "Really? So sorry you got the flu for 24 hours. How about you try to work full time, raise two kids - one who eight, darling and at times emotionally unstable...and another who is four, 35 lbs, happy and at times struggles with pretty major stuff.  Try to do all that AND the laundry, and pack lunches, and clean, and be a good friend/family member/parent, and shower.  AND...try to do all that with a dead right arm, numb right foot and the impending implication that this could possibly be the "easy" stages of the disease.  Get the f up and deal with it, you baby."

Sick right?

I know.

It's horrible and mean and I really hate the fact that I have these thoughts right now. This stupid degree reminds me every single time the thoughts appear: they are not healthy (you think?), they are irrational, they will bring absolutely no resolution to the issues I'm dealing with, and they will eventually cause feelings of guilt and remorse.

But, I kinda want to punch my degree (and my moral compass) in the face too.  I've been rational 95% of my life, and part of me thinks it is due time I let that 5% have some fun.

But, the rational (and hopefully kind) part of me will win.

I want to keep my friends and family members.

I like them a lot.

I hope they'll excuse my displaced anger filled rages and still want me around.

I promise, it will get better, and I will be nicer soon.

This Summer (According to my iPhone)

The BEST thing about having an iPhone is its' instant camera/video capabilities.

I don't care about the fanciness, in fact, I hadn't downloaded any apps until I upgraded to the newer iPhone last Spring (and I've had one for four years).

The camera gives me the allowance to act like I've actually thought in advance and planned on capturing family memories; when, more often than not, I've just sat on the phone while it's in my back pocket and remembered I can use it.

So, here are our forgotten/too lazy to bring a nice camera Summer 2010 memories:

We went to the park,

hung out with our toys,

did the Lagoon thing,

read books, lots of books,

dreamt of Zac, and wondered why he always chooses to do lame ass movies (not like I really care about the quality though),

had birthday lunches with girlfriends,

went to Bees Games,

had a bonfire, in our backyard, in 100 degree weather to burn all outdated personal info/bills (it took three hours)

camped in the yard with Dad

had dinner with friends we miss too much,

And....moved.

Plus....A few videos of pretty important stuff:

Ab's Handspring and Deak talking and climbing like crazy.

All this stuff makes the pretty penny spent on my iPhone worth it, right Blair????

Better Together.

While blog hopping this evening, I discovered this video trailer.

And, although the younger brother has Down's Syndrome, the similarities in age and personality styles comparatively to my two...just held my heart still and filled it with happiness.

Ab and Deak were supposed to be together.

I'd like to think they conspired together in Heaven.

I can just picture it.

They were aware of the challenges their relationship on Earth would bring, and were willing and eager to sacrifice.

As long as they were together.

I watched Ab on the tramp with Deak yesterday and smiled. She placed him in the center and began jumping around him so he could bounce. Deak laughed like it was the funniest thing that has ever happened in his entire life.

Abby doesn't pat his head, put up with his screaming requests for "more", or walk by him like she is in a china shop. He is her brother and she knows he's capable of more. More accurately, she demands more. I'm certain she promised him she would before they came here and became mine.

Deakon's eyes light up in ways that are different when Ab is around. She can do no wrong. Anytime she laughs, he laughs. Anytime she takes a drink at dinner, he takes a drink. In fact, during mealtimes together, he is often found with his hand on her arm. It's as if he can just soak her up into his spirit and feel happy.

Their sibling relationship may not be typical, but I'd dare say it's better.

They are my perfect match made in heaven.

The Heart Of Life.

I rarely get to choose the music I listen to in my car. Deak STRONGLY prefers hip-hop so we have a few mixed CD's that are rotated around and include artists like Eminem, Jay-Z, Kanye' West, etc. Understanding that I am never ashamed of my love for Gangster Rap, there are actually times when I'd prefer to listen to something else.

This past Monday, I was driving to the U for the billionth time for another neurological test. It was quiet, and I didn't have Deak. I flipped through my CD's and popped in one I hadn't had the chance to listen to in a while (Trying to get Deak to listen to John Mayer, is like me trying to stop drinking diet coke...NEVER going to happen). I had heard this song before obviously, but that day specifically...those well-written lyrics felt as if they had been written for me, even an answer to a prayer. I assume that is when one knows they've written a good song.

I do know the heart of life is good.

Life can be hard...really hard.

But, that's part of the process, and I am better for it.

Good people support and come through, and one learns who they can count on in those not so pretty and fun times.

Good things happen every single day to me; it is impossible for them not to if I get give them a chance. 

Fear is a friend I've misunderstood at times, but I know that's not what will drive me.

Thanks John Mayer. I may not love the way you treat women and wear nasty underwear on cruise ships (thanks US weekly)...but I do love the way your song helped my heart to listen to the good stuff.

The Day.

A few weeks ago in church, a darling young mom who I had not yet had the opportunity to meet, came and found me after our meeting. I looked at her face, red and tear-stained, and then at her beautiful round basket ball of a belly.
I knew.
I just wrapped my arms around her and cried.

Within seconds my mind was in that moment. My emotions were instantly elevated to the surface and it was as if I could re-live every single second of that day.

...It was a blizzard that morning Blair and I drove to the perionatologist's office. I was about 22 weeks along and had just started to really show my pregnancy.  The 40 minute drive to the hospital took us almost two hours; apparently many people in Utah forget that it snows a majority of the Winter, and there were accidents all over the place. It was a Wednesday morning, the day after Valentine's. The commercials and all the red and pink decorations that had been displayed to celebrate the Holiday I later wanted to rip to shreds. How could anyone celebrate?  I couldn't feel anything.

In the office there was a bulletin board with pictures of gorgeous newborn babies; giant bows on the girls, the boys placed in baseball mitts.  I remember looking at every single picture, momentarily hopeful that I may get the opportunity to send out invitations for the son I was carrying in my newly obvious belly.
We had to wait for quite a while, due to the weather, and were finally lead to a room.  The doctor was a woman, which was somewhat comforting...until she spoke.
There was nearly nothing said for a long time. She conducted the ultrasound very methodically and would occasionally point out, "Oh yes...there is a flat bridge of his nose" and "I don't think he has five toes" and "See, his forehead...it is flat" and "He has a protruding lip...right there" as she pointed to the pieces of his body.
His beautiful, perfect body.
But, it was clear she did not see beauty.
After glancing at his heart and brain and finding no significant abnormalities she then wiped the jelly off my stomach and began her speech.

"It is my strong recommendation that you abort this fetus."
Not...baby, child, infant...fetus.
"The laws are kind-of tricky in Utah, but I can get around them."
I remember just sobbing and asking repeatedly "Why? Why should I abort him?"
Her reply was not matched with gentle looks or tender gestures, just a scientific "Well...he will die anyway. Most likely in utero, or soon after birth. If he lives, he will be profoundly retarded and have no quality of life.  You will most likely not be able to have future children as well.  Don't you want another child?"

As if I didn't want this one.
As if I cared at all about his nose, or toes, or forehead or lip.

I turned to Blair and said, "No. I am not aborting him. I am keeping him."
Blair's eyes were welled with tears and he confirmed the decision.

The doctor, rather disgustedly, then asked if she could do an amnio. I agreed and she scheduled a time to do it later in the afternoon. In the interim, she sent Blair and I to see a genetic counselor. I don't remember much of her nonsense, other than some bull crap about how I should "Go home and hug the daughter I had." 
Really? Grief 101 says NEVER compare the dying to the living.
If I hadn't been in such an out of body, emotional state, I would've schooled her.

That was when the floating began...

Floating from the office, down to the cafeteria.
Floating through the phone call to my father where I said through tears that my only hope was to hold him alive.
Floating through the amnio and the giant sized needle that went into my stomach.
Floating through the doctor's discontent with my decision.
Floating through scheduling another appointment with her for three weeks later.
Floating...

The car ride home was nearly silent. It was bumper to bumper the entire way due to the storm, which in hindsight was a beautiful gift. It gave me a little time to come down from the cloud I was floating on and into reality.  I needed reality before I could greet my very alive and perceptive three year old Abby.

The next three weeks were a living nightmare. I woke up each morning and pushed and pushed until I could get Deakon to move. I truly never dared to fall asleep for fear it would be the last time I could feel him. I refused to wear maternity clothes...they were just a stark reminder of what was not going to happen for me. Boxes of baby clothes I had ordered online were delivered and carefully stuffed away inside closets by my sister.  I remembering showering each morning and planning his funeral; the announcements, the blankets (which I wanted to make), the songs.
Raw grief is never pretty.

Then, one day, I woke up.
I woke up and made a choice.
A conscious choice to have hope.
A conscious choice to fully live the time I had with my sweet boy.

I woke up, and I got to work on being happy.
And, although I have "moments", I have not looked back.  Period. 

...This darling woman and I made plans to go to dinner within the next few days. We were there for hours, and hardly had any time to eat (although I think I drank 6 diet cokes).  I really consider it an immense privilege to have maybe been a small glimmer of hope and empathy during a time that is nearly indescribable with words. Words I haven't put to paper, except for once right after Deak's birth, until now.  Words that simmer up buckets of emotions I can proudly say I muffled and waddled my way through.  Words that describe an experience which brought me one of the two most important gifts in my life.  Words that describe an experience which forever changed the human I am capable of being.

Life.

It has changed for my little family a lot lately.
We have moved from the home that we built with the intention of never leaving...and it has been a little tough for me to take.  The people who are renting it from us are great, and I know will take care of it and love it, and that has made it somewhat easier, but man...the ego has been shattered a bit.
We are in transition, living with my parents, hoping to pay off a few bills and get some solid footing underneath us. I am hopeful we will find a place to rent for a while and then build again in the next year or so. Hopefully for real this time.  I CANNOT take another packing/moving adventure every few years. It sucks.

I also had another doctor's appointment this past week.  The neurologist I saw specializes in the optic nerve and ran another 500 tests on me. She was very kind, but also very matter of fact; which I appreciated. She is also Harvard/NYU/Boston Med/Uof U. educated, so her opinion was very valued in my mind.
I didn't realize until after the appointment how much I had hoped/assumed she would just down-play the major lesion on my brain. I don't even know why...I just thought she'd probably take a look at my four MRI's and say, "Ah...you know, I wouldn't really worry about it."
That's not what I got.
I received good news being as that my optic nerve looks normal and healthy now, which is a very big relief.
Almost within the same sigh of relief, came the "Oh man..I can deal with this" sigh (the one where you suck in order to encompass any strength left within your soul.)
This doctor let me know that my lesion is "big" and not good. She concurred with the belief that this lesion was the nasty bugger causing all my numbness and cramping on the right side of my body. She said it definitely looked like MS to her, and she completely understood why I was being sent for testing.
In fact...she ordered another test.
Yippee.
Although this next one is supposedly not uncomfortable and painful as some have been.
This doctor also said that she believed it was in the beginning stages, which is why the MS specific testing is not always coming up positive yet.  She actually said, "Ah..if they re-did the lumbar in a year or two...it would be positive."
Nice.

I am not ashamed in the least to admit that I am still living in the lovely land of denial when it comes to the reality of my life with this disease. Even as I type this, it feels a little "out of body" because I really have not had time or energy to devote to dealing with this emotionally. Someday I will...and someday I may need to learn better coping skills.
But, for now...this way is working most of the time...and most of the time I am okay.
Okay is okay with me.

Eight.

She really is.

Growing up too fast for her mom.

Cliche', but true.

I mentioned in an earlier post about how I've come to rely on Abby's stability. I know it seems a little backwards, but she just has a way of making me feel like I have the ability to hold myself together.

Abby is brave, thick-skinned, confident, kind-hearted and pretty damn funny.

She is okay with the fact that she sometimes gets overlooked by strangers and their innocent, but often too focused attention on her brother.

She is everything I ever dreamed for in a daughter.

In true Abby fashion, she had a three day festival encompassing her birthday and it's surrounding activities.

We did dinner and cake on her special day; had a few special friends from school out to Build A Bear, lunch and the fountains at Gateway, and then celebrated with family and friends at her Baptism.

Ab was very excited for her Panda Bear Pillow Pet and her Itouch.

Ab insisted on singing "Happy Birthday" two times; once for Deak because he loves the song so much.

The cute girlfriends: (Left to Right) Rachel, Emily, Elle and Ab.

They let Deak join in on the fun (thanks to my mom who helped).

In our church, we baptize children when they turn eight.  We believe they are old enough at that time to choose for themselves if they would like to become a member of the religion their parents practice and believe in. Ab and I discussed this very seriously. I wanted her to understand that she had a choice.  I believe she completely understood that choice and entered into her Baptism with her whole heart.  It was a very sweet day, and a wonderful, wonderful reminder of what is truly important in life.

All the Grandparents in attendance

The entire crew of wonderful people who came to show support for my sweet girl.

As a mother, these moments of rejoicing and happiness over this beautiful child you've helped to create, are what "it" is just about.

I love my cute eight year old, and hope she knows it.