{In it for the long run}

 

Gotta love kids! Today I received a message that my daughter had a track meet about 30 minutes away from us. Why would this be an issue? Well, I was only given about an hours notice. Thankfully, the kiddos got ready as fast as they could and we made it in time to cheer Shi on! 

She expressed that she was really nervous, not only was this her first meet of the year, she was running and jumping as on the Varsity team which meant the competition would be that much more fierce. Both Joe and I tried to explain that it is not all about winning but trying her best that really mattered. I am not sure she bought into the idea. 

As you can see from the video she did not win. And that is 100% ok in my book. Shi has never been a strong runner, she has never been very athletic at all. She is my child who prefers to draw and write; not participate in sports...yet here she is trying her best at a sport that she absolutely loathes. When I took her to get her new track running shoes and spikes as we left the store she looked rather disappointed. When I inquired about it she said up until that point she was thinking she would never really have to make it! Silly girl, one would think that by now she should know me a little better than that. When it comes to my children when they want to do something, come hell or high water I am going to make sure they have the best equipment there is! Even if it is just shoes. 

Anyway the last time I timed Shi on the track running the 100 meter dash her time was a far cry from varsity time - both she and I were fully aware of that. Hence today's killer nerves. Today she pushed through and shaved 2 seconds off her personal best record!! 2 SECONDS! Needless to say we were both jumping for joy once I met her at the finish line. She may not be the fastest now, she may never be but she is persistent and does not give up...even when the odds are against her. In my eyes, that makes her a winner.

Happy Earth Day!

"He that plants trees loves others beside himself." -Dr. Thomas Fuller

{Operation Brain Drain was a Success} OUR HYDROCEPHALUS JOURNEY

Well, yesterday was the big day! Operation Brain Drain was a success!! From the moment we arrived at the hospital everything amazingly smooth and the medical team assigned to Joe were amazing! I could see, piece by piece, second by second his fears dissipating before the moment he was wheeled away from me. 

As soon as we arrived to the surgery center he was assigned a number, this would serve as my way to check up on him thought the surgery process. Honestly, between myself and his other family members present I think the board was checked about 50 times...mostly once we learned he was in the recovery room as we were all very anxious and excited to get to see him. 

{'Tis the night before surgery - Part 2} OUR HYDROCEPHALUS JOURNEY

'Tis The Night Before His Surgery 

‘Tis the night before Joe's surgery, and all through the house

Not a creature was stirring, not even a mouse.

His suitcase was packed by the front door with care, 

in hopes that a new him would soon return there.

The littles were nestled all snug in bed,

While visions of surgery outcomes, haunted my head.

He had just gotten home to such a terrible fright,

For it was 11:00 PM, and he could not eat after midnight!

From the kitchen he heard such a clatter, 

I had dropped his plate of food, oh how the tacos did splatter. 

He rushed to help me;  not a moment to spare,

As I was cleaning the mess and crying about how life is not fair.

There he found me in the middle of the room,

still crying over a mess and wondering what he would consume.

Then, it hit me; Spaghetti I did make make.

Leftovers were fast and it’s tasty, and included a slice of cake!

With in a few moments he gobbled it up so quick,

I thought to myself, "Oh, please don't let him get sick."

Then he looked at the blender on the counter; wondering why it was there,

“I made a milkshake and I'm not gonna share!"

Reluctantly, I gave in; pouring my shake into his glass and filling it to the top.

He sat there and drank until we laughed about how much longer until he would pop.

One by one, the hours crept by, as I laid awake counting sheep.

His surgery has me a wreck and I couldn’t go back to sleep!

‘Tis the night before surgery, and here in my house;

they are all sleeping soundly, including my spouse.

{'Tis the night before surgery - Part 1} OUR HYDROCEPHALUS JOURNEY

Uninspired. I don't think there is any better word to describe how I felt today. After picking up Scar from my Uncle's house this morning I just did not feel like doing anything. Nada! Most of my afternoon was spent with me curled up on the couch, desperately trying to catch up on the sleep I have lost these past few weeks. On a bright note I did get to nap for close to an hour so I feel wide awake and refreshed right now! HA!

It was not until around 7 this evening that I finally got my lazy butt off the couch and started getting my ever growing task list completed. I washed all of the bedding so that after using this special preoperative skin preparation soap tonight Joe is sleeping on fresh, clean bedding. Then I decided I should go ahead and rewash the clothes that he will be wearing to bed and those that he plans on wearing to the hospital...better safe than sorry. After getting those loads down, it hit me - I need to bleach the towels he will use tonight and tomorrow so back to the laundry room I went. (At this point I started thinking maybe I needed to make a list.) BAD IDEA! That list kept growing and growing:

Ever had one of those days?

"Cause the players gonna play, play, play, play, play

And the haters gonna hate, hate, hate, hate, hate

Baby, I'm just gonna shake, shake, shake, shake, shake I shake it off, I shake it off" 

- Taylor Swift "Shake it Off"

Oh how I love thee, FB Memories

Woke up this morning and FB reminded me that 4 years ago, this moment happened! I must say, as much as I dislike FB sometimes I am loving the daily reminders of how blessed we truly are! 

{Denial ain't just a river in Egypt} OUR HYDROCEPHALUS JOURNEY

Do you know what most of the words above mean or what the acronyms stand for? If not consider yourself lucky. These are all terms that, over the past few weeks, I have become very familiar with. Trust me when I say it is a HATE/HATE situation...there is no love here.  This entire journey has been a nightmare since day one, and not for the reasons you may be thinking.  

If you were sitting here with me the best way I could explain my past few weeks would be to tell you to close your eyes, take a few long and deep breaths, picture a mountain but instead of rugged terrain it is  a freaking mound of paperwork. As I say that last statement, WHACK I would smack your forehead. Come on, you remember that game growing up, right? Right?  I can't be the only one who ever got sucked into it, though I believe we were told we were running through the woods. 

Anyway, THAT is exactly what I am faced with. Paperwork, mounds and mounds of it. Really, it would not be so overwhelming if most of the papers were not denials of some sort. Way to make a girl freak out, people. The denials start with the original request for FMLA. DENIED! This denial lead to Joe getting "pointed" at work and at the moment he is negative enough that his employer can terminate his job at anytime. (Insert every expletive word you can think of here...and maybe even some you just combined or made up.) Silly me, I forgot to mention that the request was denied even though the doctor restricted Joe from work for 5 days pending his evaluation by the neurosurgeon.  That there is BS at it's finest folks! 

{Friends don't let friends light it up blue} Why we boycott Autism Speaks

A few months ago I sat in my daughters psychiatrists office listening intensely as he explained her diagnoses to me. One by one he went down the list; some I was familiar with other left me clueless. Oh goody more googling when I get home. I was saying the words over in my head so that I would properly remember them upon leaving. It was then that he mentioned ASD. Now this was a term I was very familiar with, I first heard it when my daughter was about 5 years old. 

ASD = Autism Spectrum Disorder

Before, for her, it was a theory...never confirmed. But on that chilly Fall day; my "fears" were brought to life. Why fears? Simply put, I had been following Autism Speaks since her PCP originally mentioned his belief that she may be autistic. Why would following Autism Speaks bring out fears? Glad you asked!

These are words that Autism Speaks uses to talk about Autistic people and their our families:

Barely Living.   Battle.   Burden.   Crisis.   Crusade.   Despair.   Fear.   Missing.    

My daughter's life, our life is beautiful and chaotic, joyful and mundane. Yet, Autism Speaks is telling me, telling us, telling the world to HATE...to HATE my daughter, to hate my family, to hate our families.