Friday, June 18, 2010

I am a Rock.

I have a very vivid memory of an experience I had as an older child while riding in our van with my family.  I can only assume now that we were driving to Utah or to a softball tournament, the specifics of which I don't remember.  My parents were playing their Simon and Garfunkel cassette tape and the song I am a Rock started playing.  This song resonated somewhere within me.  Pieces of it were so identifiable as being a place I knew I could get to if I let myself get the best of me.
My dad then asked from the drivers seat what I thought the songs meaning was; he must have sensed that I was drawn to the lyrics.
I remember answering and then my parents looking at one another in a way I can only understand now that I am a parent.

"I've built walls
A fortress deep and mighty...
I am shielded in my armor...
I am a rock.
I am an island."

I stick by that.
The armor and walls I've built have gotten me through some pretty tough things.
As humans, we need them.
Defense Mechanisms can be really awesome sometimes; they just take over and help us survive stuff we weren't sure we could.
Defense Mechanisms can also suck us in.

If I were my own client right now, there are a few things I may want to gently guide myself into doing.  The first being, honesty.  If one is not honest with others who love them, how can they be honest with themselves? It isn't possible.
If one is not honest with himself, is it possible to heal?
Never.
Therein lies my dilemma.
Is this how I share something like this? Is it attention seeking? I don't know. I hope not. 
I just know that the disguises I've held for the past few months in the name of privacy aren't helping as much as they are hurting.  Yesterday, I was having a dark day...and found myself attempting to find solace through a lame ass Internet message board, rather than with the people who I can actually see.  It was kind-of a rock bottom, in a strange Internet chat room kind of way.
Although I understand rationally that hopefully there are family and friends who want to offer support, I have chosen to let irrationality win, and isolate myself and my feelings.
So dumb.
Isolation is rather lonely. 
It doesn't really suit me, or anything I believed in when starting this journey.  
So...here goes nothing.

I've been having some health issues.
I like to pretend they are nothing...and actually most of the time they are nothing.  But, sometimes they are something. 
I am not naive enough or insensitive enough to think for one minute that there aren't many of you feeling terribly worse than I, and because of that, I will be brief.
I may have Multiple Sclerosis.
Feels a bit too real to actually type that.
I am hoping I don't have it...although at this point, the cards aren't stacked in my favor.
I've had a couple of years of some weird things happening that I would see a random doctor for, and then feel better. No big deal.  In fact, this MS diagnosis first was mentioned by a doctor a couple of years ago, but I really thought nothing of it until recently.
This past February, one Thursday morning, Blair was running late to work...probably the only time he has been that late in years.  That same morning, right before he left, I had, what appears to have been, a seizure-like episode. 
Blair was home and able to help me, and it was not by chance. 
After that... tests, tests and more tests were run, and a few nasty diagnosis were tossed around and eventually thrown out (thank goodness).  Most of these tests have been negative, which has been a good thing.  The brain MRI, unfortunately, was not.  I have a few "lesions." One good-sized and just a couple real tiny ones. My neurologist assumes that is what is causing a few of my symptoms (which aren't terrible...just weird).
As of this point, I am scheduled for another test in July, and then a follow up MRI in a year if I do not have any new "episodes."  My doctor is appearing very certain about what he sees, but is also being cautious because a diagnosis like MS requires a life long dose of meds (between Deak and I we may just actually have to licence our home as a pharmacy).  Whatever I am dealing with also appears to also be in the beginning stages, which is good, and where it will hopefully stay for a long, long time.

Phew.
I don't know if this makes me feel any better.
But...at least it's real.
And also really, really, really...I am fine.
Totally fine.
I will get through this again...and I am hopeful that if I am due to deal with this disease...I will be fine, and healthy, and happy.
I get to be.
I also don't have to search for random hypochondriacs on Internet sites anymore.

Monday, June 14, 2010

Pause.



Amidst the lunch-making, Gabba viewing and gloomy mood today, I looked towards my Deakon and just stood still.

I watched Deak stuff handfuls of chopped up mini-corn dogs and apples into his mouth, all the while trying to crank his neck so that he wouldn't miss a second of his treasured show.
He has come so far.
He just looked so big in his fancy booster chair; eating at the island bar like his big sister.
Just a few minutes earlier, I had yelled for him to come and eat.
Most recently he has become able to respond to my requests.
I've always believed he understood what others have asked of him, but his fine and gross motor issues have prevented him from being able to show us.
Not anymore.
He will donkey crawl, mock 90, around the hallway corners and into the kitchen for any type of request that involves eating.  He then waits (not very patiently:) at the slate floor/carpet border, high on his knees (closest he gets to independent standing at the moment), and signs "more." Over and over.
"More" can mean a lot.
More Gabba, more drink, more food, more flips from Daddy, more swinging, etc...It has proven to be the most useful tool in Deak's ever-expanding realm of communication.
I should mention that he often neglects to "hear" requests that involve less fun things...like changing diapers.

Today I am thankful.
Thankful for the places we've been and the places we're going.
Thankful for a boy that provides my soul with the much needed opportunity to pause.

Wednesday, June 9, 2010

In Case you were Wondering...


Ab has created the following lists for her birthday.
(To her credit, I actually asked her to create a list so I would know whether or not to head in the pre-teen direction, or little girl direction.  Eight year olds are a little difficult to plan for.)
But...Really Lotion?
Guess she's planning on laying out this summer.
Guess I know which aisles to head to.
(Also...yes...she has written Ipad. She is obsessed with Modern Family and has wanted one since the Ipad episode...gotta admit...that is a good episode.  She also has written a big Ipod.  Anyone have a Nano with a screen they want to get rid of?:)

Tuesday, June 8, 2010

Lying on a beach.

At one point this year I thought I may be lying on a beach somewhere in the Mexican Caribbean this week.
It didn't happen.
Today, I feel very sulky about it.
I feel very sulky about lots of stuff: house not selling, Deak's monster attitude (5 days and counting), my general feeling of tiredness which leads to no exercise, no Chromosome 18 conference, no Lagoon Passes...all of it.
I've tried to cheer myself up. I've been cooking fancy dinners and getting lots of good hitting tips while watching the College Girls Fastpitch Softball games...
But...they are not close to comparable to where I thought I could be this moment.
I need a break.
I really do.
I also need an attitude check.

Thursday, June 3, 2010

Excerpts from this Past Week.

Blair: "I think I need some butt cream (aka diaper rash ointment)."

Ab:  "I only poo twice a week, and not ever at my friend's houses."

ER Doctor #2:  "Do you drink any alcohol?"
Me:  "Highly considering it."

Ab:  "I don't need dinner, I just had two Popsicles and a slushee."
Me:  "You need to eat dinner; I made Ramen Noodles."

I guess it's suffice to say that the rope I'm hanging on is dangling by a thread.
Thank goodness the Housewives of New Jersey, Dog the Bounty Hunter and Billy the Exterminator are keeping me going.

Can it please be summer now?

Tuesday, May 25, 2010

The party that only had one eye.


One eye, tall and friendly.
Otherwise known as Muno.


Deak had a great birthday party.
We ventured out to our local fun center for bowling with family and Deak's best Chromosome 18 buddy.





The girls (Ab and I...Alisha and Emarie)


I love how Em always is giving Deak a "What in the world are you doing?" look.

Thank goodness for my sister, or I would not have any pictures of anyone but Deak.



We decided Deak would like riding in the race cars, which he did...until a lame giant teenage boy, in true teenage form, decided to ram full speed into the back of Deak and Blair's car.
Now...if he would've apologized...no brawl would've ensued.
But, he LAUGHED!
Really.
Blair was "just a little bit" fired up.
(And maybe me, and maybe my mom too).
In hindsight, we probably should've let it go.
But, when you're holding a screaming, hurt child and someone else thinks it's funny...emotional stability is not a priority.
Deak eventually recovered and I think Blair scared the life out of the six foot tall, ignorant teenager.


Deak and Blair went on the boats to literally and figuratively "cool off."
Deak loved the boats and loved the little boy who chased them around the entire time and sprayed water.
After all the excitement, we headed back to our house for pizza, presents and cupcakes.



Overall...the party was about four hours long.
Not nearly long enough to celebrate the life of the boy who brings more joy into my world than I previously knew possible.
I can't imagine my life without him or his sister; Ring 18 and all.

Monday, May 24, 2010

The Soccer Queen.

When Ab loves and wants something, she is willing to work super hard.
Soccer is no exception.
Ab also loves to win. Everything.
This season of soccer was not full of winning every game, but Ab had a great coach who taught the team how to play within their positions and together as a team. She really learned a ton. Ab was also able to be on the same team as some of her good friends from school, so that made everything even better!

#6 in the ever fashionable pink cleats


Blair "helping" Ab at Goalkeeper.  I'm not sure he could get any closer.

A well-deserved break.

Ab with her team and good friends Rachel and Abby D.



Ab earning her medal at the team medal ceremony (Abby was thrilled because the medal was "Made in China")
We can't wait for next year!