A New Zoo.

I'm not really a zoo lover.

It stinks, you can't use straws in your diet coke, and there are lots and lots of hills that make pushing a 40 lb boy very difficult.

But, the kids love the Zoo...so to the Zoo I go.

Deak has been interested in "things" for a couple of years now.  He enjoys his shows, his buttons, and his music; stuff he "knows."  But, getting Deak to be interested in things I think he "should" be interested in, has been a process that waxes and wanes somewhere within the land of acceptance. Places like the "zoo," haven't always been his favorite because although he could sometimes see the animals, it has not always been easy for him to go through the mental process of "Oh hey, that's a tiger. I like tigers. The tiger is moving towards me. That is funny, etc. etc" because he only attends the zoo once or twice a year.  It is not a daily event.

 Those executive functioning (brain) tasks that piece together all the aspects of our world and make clean and precise thought-processes which develop into emotional and behavioral reactions, happen in inside a "typical" child's brain within seconds.  But, they take a lot longer for my Deak.  He works very, very hard to develop the proper mental schemas for specific situations and than works very, very hard to pull those schemas out at the appropriate time.  He understands most of the world, but new situations are confusing because they are not readily accessible inside his mental book of "stuff I do." New experiences, even though they are fun, can lead to a lot of frustration for a little guy just trying his best to process and react.

So, that psychology lesson leads me to this:

Deak loved the Zoo. 
Like, for real, loved the Zoo.  His cognitive fortitude has really grown by leaps and bounds this year.  For the first time, I am taking him places (the park, the zoo, the pool) and he is loving every second.  His processing speed is now more equipped to keep up with his surroundings, and he gets to enjoy the good stuff...which means, I get to enjoy the good stuff.

(and although I do not want to tempt fate...)

It is lovely.

Proof that this kid had an awesome day...

 Loving the leopard/cheetah thing that kept coming right up to the glass...

All the crazies together, as best as we can get...

 I kinda like this girl...

Cousin Taylor

Cousin Camden, who never leaves the house without his shades.

Cousin Crosby, hanging out in the stroller.

Loving the baby elephant with her Mama...We watched them for a good 10 minutes.

Emotionally, this raising my Ring 18 boy thing, can best be described as a roller coaster on crack.

But the joy...oh, the joy...when he learns something new, or discovers something for the first time, is absolute divinity.

Looking forward to more adventures for the next couple of weeks before my Deak heads in for neural-spinal surgery to release his tethered spinal cord.

Soaking up summer while we can.

Chapter Six - Secure.

 He was always wearing his striped Chevron shirt and navy blue shorts when I'd first see him at night.
 The blue color of his shirt highlighted the crystal blue ocean eyes that he would, in a few years, give to our first born daughter.
I love those eyes.

Blair had to work Thanksgiving, and I did not want him to leave. 

He told me he loved me while saying goodbye in my basement room.
It caught me by surprise.

And, in typical Jenny fashion, I needed time to process.

I did not want to use those words unless I meant them.

24 hours later, I knew.

And, I told him too.

Somehow, through those words, I knew that I was making a choice to travel a different direction than I had previously planned.  There had been someone else, but no one who made me feel the way I felt when with Blair.  Blair's stability and strength sustained me; it balanced out the way I tend to run off of emotional fumes and fed me the energy I needed to believe I was good enough to do what I wanted to do, even on my own.

I carried around a green Franklin Planner as a wallet/purse while we dated. Inside this planner, I had placed a quote that I had cut out of a magazine years earlier. 

"Love is like putting on a pair of warm and cozy pajamas and slippers. That warm, that comfortable, that right."

Secure.

He proposed to me at the place he first saw me in the the middle of March, 2000.

Quiet, private and perfect.

I knew it was coming.

And, this time I didn't need any time to process.

(Blurry picture taken the week of our engagement in Saint George)

To catch up, click on the links below:
Chapter One - Pretty Red Shoes
Chapter Two - Tattoo
Chapter Three - Trash Bags and Dates
Chapter Four - Fire
Chapter Five - Sometimes it's Okay to Turn your Head

Happy 11th Anniversary Babe. I love you.

Transparent.

Last Wednesday night, sleeping wasn't happening for me. 
I knew it was coming, but sincerely tried my best to avoid thoughts that allowed my heart to feel the anxiety.

Thursday was MRI morning (for me.)
I didn't let anyone come, not that anyone really begged to come anyway.  Sometimes I like to face the facts, let them sink in, and then distribute them amongst the people who want to know.
I need time and space for processing.

I had hope this appointment was going to go well, and that was mostly the case. I've seasoned myself in the art of thought-control and after four MRI's in year, can honestly say that those terrible machines don't cause me near as much stress as they did in the beginning. Thankfully, because they are destined to become a part of my routine, much like dental cleanings and hair-coloring.

I met with my Neurologist shortly after the MRI.  The beauty of the amazing technology at the University of Utah allowed the MRI to immediately be read by both my neurologist and the head neuro-radiologist. A part of me kind-of knew this was going to be a significant appointment.  I have been given every test in the neurological field (lumbar puncture, EKG, EMG, MRA's of neck to r/o cardio stuff, etc), probably drawn 100 viles of blood, and a team of neurologists have reviewed and confirmed different aspects of my case. In fact, for the past year I have even been technically diagnosed with "Probable MS."

But, still.
Getting a diagnosis sucks. 
Now, it's real.

My experience on this path of diagnostic trial and error has been different than most.  I haven't felt desperate for knowledge, or a strong desire even to figure out my weird health issues.  I quite enjoyed denial.  I had a family doctor actually mention to me about 3 1/2 years ago that he suspected I could one day have MS, and I blew him off as if he were one of my kids begging me for another cookie. 

As long as I didn't have a definite diagnosis, there was hope I would recover and not have to climb this mountain.

But, confirmed Thursday by my darling neuro (fresh off maternity leave), I do have MS, and I can't pretend I don't anymore.  The good news of the day was that I have not had any new lesions (scarring of brain tissue) appear this past year.  I still have what my doctor quoted as "multiple" little lesions, and then one "big" one in my left frontal lobe. The big one was the deal-breaker for the neurologists who consulted and reviewed my MRI, and it is also the one that causes me symptomatically the most problems.

My doctor basically did not leave me a choice.  She highly suggested I begin taking the disease modifying injections, with her recommendation being that I start on Rebif, which is the newest and strongest.  Because I am doing so well, she'd like to preserve my quality of life as long as we can.
So, the drugs I will do.
They are injections that I give myself three times a week, which isn't too terrible considering I give Deak one each night.  There are some nasty side effects, that I am staying hopeful that I will avoid (24 hours of the flu following each injection, so 3/7 days a week, I get to give myself the flu...yippee.)  I was given a gargantuan binder full of information, asked to fill out a prescription sheet, and told to return in 4 months.

I sat through the entire discussion with a smile on my face.
That suit of steel really comes in handy some days (thank you Deak).

I walked through the front doors, looked towards my car in the direction of Huntsman's Cancer Institute and had quite divergent thoughts. Part of me felt envious of some of the cancer patients' ability to become "cured," understanding that is not a luxury I will ever be afforded. Almost as quickly as that thought appeared, a second more rational thought came and quickly dissipated the comparison of the two diseases; bringing gratitude for my hopeful longevity and quality of life.  Thank Heavens for rational thinking.

I only made one phone call, to Blair.
I couldn't speak.
All I could muster the first 30 seconds was, "I don't want to talk about it."
But, I did.
And, I cried.
And he told me it would be okay.
And, I will use his strength to carry me until I am ready to believe that myself.

I am so, so, so hesitant to share my diagnosis with others. I just want to be me, not "Jenny with MS."  I haven't had the most wonderful experiences to date sharing my probable diagnosis with others, and am very frightened by the thought of all the muffled whispers as I see others out and about.

But, I feel that I need to gather some closure. I need to accept that Multiple Sclerosis is now a part of my life.  And, a big step for me within this process, is allowing other people in my life to know; to become transparent in the one part of my life that I have attempted to hide.  I hope that through this, I will discover an honest re-definition of my life that will leave me with hope, rather than nightmares.

So, I know I've only really spoken of this a couple of times through this blog, I will give the whole "transparent in all things" approach the good old college try.  Although my primary focus will always continue to be writing my little family's history, and spreading awareness of Ring 18 and special needs parenting.  I guess I just needed more "material" and have now found yet another experience to hopefully help enlighten the few of you out there on. 

I am certain of one thing. 
I am still me.
Yes, my life requires a bit of re-defining, but I've grown accustomed to unexpected plans, and I can deal with this one too.

Preschool Graduation.

Changed Expectations.

That's the term that adequately portrays much of my emotional growth during my wonderful five years with my Deak.

My big boy graduated from preschool yesterday, and although the setting may have been a little different than that of most preschool graduations, it was his, and it was perfect.

Most of Deak's Classmates, including Indy (the bff) covering her eyes in the middle.

Deak basically loves anything that has to do with people thinking he is awesome.  I'm not sure I expected him to love the ceremony devoted to the graduating children like he did, but he did. He loved it. 

He loved his diploma and looked at very carefully, smiled knowing he had done something super amazing, and then handed it to me. 

When he scrunches his little neck, it means the boy is excited.  I love it.

 Deak also received an award for "Master of Computers."  Very fitting.  He can turn on and completely run (unassisted) the classroom computer programs.  Coincidentally, that afternoon, before the graduation, he had eyed the Speech Pathologist's ipad, snagged it off the table, turned it on, slid it open, and enjoyed himself an app or two before being noticed. He is pretty amazing, and pretty dang smart.

Deak and Miss Meegan (He was happy, just happened to snap him upon his noticing of the snack table:)

Deak and Miss Lyndsey

Deak and Miss Tonya

Finally, he got the juice box.

Indy and her mom, Jessica.

 

At the end of the night, after spending a dinner out celebrating Deak's graduation and some other good news, Ab and I prayed together before telling our stories at bedtime.

Ab told her Heavenly Father that she was "So Grateful that Deak graduated from preschool."

It melted my heart.

So am I.

Here's to many more "big days" for my "big boy."

Number Five.

Since we celebrated Deak's five years of miracles with 250 or so of our closest friends at Deak's Run for Hope, we kept the actual birthday celebration pretty low key. 

It was perfect.

A few family members gathered with us for a barbeque at the park, and we relaxed, played some soccer and tee ball, and enjoyed the moment. Even the moments full of wind gusts.

 Do you think he likes t-ball or what?

Abby had hand-written an agenda and single-handedly organized the event.  She had mentioned to me earlier in the day, how she loves Deak's birthday and how she "pretty much likes it as much as my own except I don't get the presents."  She loves him with her entire heart.

Wonderful time spent celebrating our little dude.  We love him beyond words.