Proposal.

The city asked me to write.
A. formal. proposal.
...for our run for hope.
Luckilly, I have this blog to fall back on.
I recycled last year's fundraising article and made a few changes.
Click here, but have some tissues handy. 
Deak has an innate ability to open the floodgates.

Online Registration is Now Available!

Hooray!

Online Registration is now available and easy, and heaven knows I like easy things.

The link is always listed to the right in the sidebar under "Details," but I will also post the link HERE.

Thanks for all the support; I was in tears this morning as I saw how many of you have linked this site to your facebook pages and blogs. Nothing like a little love to help my day instantly get better.

Love,

Jenny

Spirit Runners

I hope now, that I've done a better job including all my family and friends.

Also, I'm feeling rather intense about the amount of pressure I'm putting on people...the passion is flowing, and it is hard for me to contain.

So, please don't feel pressure - just love.

Love for my boy, and his crazy mom who can't stop advocating for better things.

It just won't happen:)

Click Here to check out the new post on the Run Site.

And, we're off.

Check it out, here:

http://deaksrunforhope.blogspot.com/

Please, join us for this awesome beginning; a beginning which I hope will become an annual event many will look forward to.

Sledding.

We were so, so, so excited to go sledding on New Year's Eve.

Deak and Abby both had gotten new sleds for Christmas and we were all anxious to try them out.

In fact, a new cool and slippery sled was the top item on Abby's Christmas list.

And, we all just knew Deak would love being pulled around.

Or, not.

Most of the short time we were able to spend at good old Happy Hollow was filled with ear-piercing screaming.

Deak was NOT cool with the sledding.

To his credit, it was quite literally 5 degrees outside, and he was cold.

But, man...it was quite the let-down.  We had put all our eggs in the "Deak is going to have so much fun basket" and not any in the "Deak is going to think it sucks basket."

Although, she too was quite disappointed about her brother's reaction and the fact that we couldn't stay very long, Abby was awesome.

She made the best of it and had a great time.

Deak had a few momentary lapses of emotional stability, and we were able to catch a few smiles.

As I said, they were momentary.

Blair and I even got in on the action for a second or two.
I'm not going to lie, I was scared out of my mind.

Overall, we really tried to make the best of it.

Sometimes, especially lately, the hardest part of having our cute little Ring 18 boy means we have a family that can't always go and enjoy activities together.  We often have to divide and conquer, or leave early. I don't want to have to stay home all the time, but I miss Deakon so much when I know he really can't handle, or wouldn't want to come with us somewhere. 

After we had packed up and were driving away, Blair and I discussed this very topic. I think Abby especially had been excited to share something she loved with her brother, and then...it didn't work out as we anticipated it would.

It's just a reality of our world, and we are okay with it.  I just am so grateful for the opportunities when I get to have my entire family together, happy and enjoying an activity.  Something as simple as making it to halftime at a high-school basketball game is extra special for us.

Simple can really make us happy, and that is a gift.

just a couple of questions...

#1: Why in the hell is the child alarm clock only set on holiday weekends?

Really, Kids? Really???

Deak (mostly) woke up before 7:00, and Ab before 7:30 this entire weekend (except for Sunday of course...early morning church just so happens to give me a terrible headache).  IN FACT, Deak was up and watching Dora at 6:45 am and Abby entered my room about 7:15 and yelled, "GET UP, GOSH!" just yesterday. 

Not so much today.  I literally had to pull Abby up, without trying to wake up my mom, who was still asleep, as Abby was sleeping on her floor (Question for another day, why does a child, who has never had an issue with sleep suddenly, in her 8th year, begin randomly begin playing bed hopscotch?  It is lame, and I have zero patience for it anymore.)

As I pulled her up, walked her into her room to get dressed, I kept hearing mumbling..."I hate school. It is hard and dumb. I want to sleep."

Really? Where was the joyful attitude that was presented yesterday while you tried to torture me?

It had dissipated along with the holiday, I presume.

Where was Deak this entire time, you may wonder?

STILL SLEEPING.

At 8:00.

Like real snoring sleep.

Kill.Me.Now.

#2:  Does anybody who writes a love song actually have a child?

After making breakfast and enjoying my morning before I leisurely headed out the door, on-time, to my early morning meeting...

Cough...Cough...

Fine, the truth:

After I screamed at Abby that she better be nice to the sitter and not climb back into bed, I ran to the car, only to realize I didn't have time to take Deak's walker out of the back of my car and leave it for him to have at school nor did I have ANY diet coke, nor time to stop (being as that I was attempting to make it to a meeting that was being held in approximately 45 seconds, and I had a 10 minute drive ahead of me), I turned on the radio.

(What a perfectly lovely run on sentence)

Yes, I turned on the radio...

...only to be serenaded with love songs.

BLAH.

Who has time to put on a black dress and dream about going home to their lover?

Do these people not realize that in order to put on a black dress, go out to dinner and...then...come home and share a romantic evening with your significant other, the following stars have to be aligned correctly?

1.  Deakon must not see you in your black dress, or else he will inevitably crawl to you, put his arms up and ask to be held, then promptly bite your shoulder and wipe all leftover milk, goldfish crackers, fruit snacks and random household objects he has recently ingested onto your once clean "black dress."

2.  Abby must not see you in your black dress, or else she will through a fit about how "she really wants to go" and "cannot go to sleep without you" and question the reasons why as her mother, you do nothing but think of you, you, you. (Yes, she told me I was thinking too much about myself yesterday).

3.  You have to have a pre-arranged babysitter who wants to do the job.  Enough said.

4.  You have to know the name of a restaurant that is of the caliber of fancy black dress wearing.

5.  You have to have $ for said resteraunt in your Dave Ramsey cash envelope, and still be allowed to eat the rest of the month.

6.  When you actually do get home, sometime around 9:30, you have to still not want to kill over and die from a) eating so much food as to not feel guilty for blowing the entire food budget on one meal and b) from sheer exhaustion because let's face it, 9:30 is late.

7.  Hurry and get the romantic stuff over quick before your 8 year old realizes your home (even if she's sleeping, she's got some warped form of E.S.P.) and decides to open your door that does not lock and hop into bed.

I don't know what you're thinking, but I'm thinking that's a whole hell of a lot of necessary star alignment.

And, I am definitely not that lucky.

I've got more...like why in the hell did the school district I work for think it was a good idea to cut vice principals' jobs and expect me to do two?

But, I figured I'd like to keep my job...so my opinions shall remain voiceless.

My boy.

I'm doing it, I don't care.

...the mom-bragging thing...

He's pretty awesome and I'm pretty proud.

This boy...

(This is my most favorite picture of him to date; the DJ Lance shirt, his lean "big-boy" body and posture, and his infamous sideways glance that always tells me his thinking of something big.  It is classic Deak.)

...you know, the one who the doctors said would have "no quality of life"...

has surpassed ALL his physical therapy goals with his new private therapist

FIVE MONTHS EARLY.

Yep, he did them all in a month:

Pulling to stand - done.

Cruising - done.
Getting down by himself while standing -done.
All.Done.

 You think he's proud?

I think he has decided enough is enough.  His mind and body are catching up to one another, and it is absolutely amazing beyond words to be a part of.

Amazing.

This boy; this boy, who I was told would not breathe a moment of air on this earth...

HE is independent, and capable, and most definitely the most adorable four year old curly-haired boy ever.

...and, he'll walk like crazy along the couch for a diet coke...
I have no idea where he gets that from.

Christmas Day 2010

Amazing day; filled with an ecstatic Abby and a cute little Deak who loved every single button and sound present he/Abby opened.

 Especially Dora.

She's his new love.

Abby really loved her Tinkerbell Kitchen and Dollhouse.
I really loved that she is still young enough to ask for them.

She also really wanted a wheelchair for her American Girl Doll.

It made me cry.

Yes, I'm pretty certain she rocks.
In fact, Christmas rocks.

Present.

That is my most important New Years Resolution.

Being present.

I actually really, really enjoyed turning 32 this year.  I usually really, really hate my birthday, so my attitude was probably a very welcome surprise for my husband who has endured 11 or so years of birthdays with me.  Yes, it kinda sucked to have to go back to work after the break, on my birthday...but, I dealt with it, and maybe even had a little fun seeing the kids again.

I've been attempting to enjoy moments more and worry about what the future holds less for quite a while yet, I never really have been able to get the knack of it.  I'd enjoy a day or two, and then go right back to being a stress cased consumed with all that lies ahead (which is often A LOT).

But...then...I got sick again.

And, I remembered what it felt like.

And, I desperately appreciated the length of time that had expired without me having to feel that miserable.

The vertigo returned, and quite literally woke me up out of bed at 4:30 am a week or so before Christmas.

I was awakened, eyes still closed, with a room/brain that literally felt as it it was spinning around and around like a tea cup.  I quickly changed positions, hopeful that the spinning was just a fluke and my world would slow down.  No such luck; it was there.

I was exhausted - sleep hadn't been overflowing in excess up to that point for me, and I was certain that my sleep-deprivation was playing a key role in this evil return.  So, I attempted to sleep. 

That didn't work either.

The really crappy thing about neurological vertigo is that your damn brain doesn't ever stop...even when your eyes close, the sensation continues.  If I am lucky, I can sometimes fall asleep while spinning, but that is only if I have not become extremely nauseated from all the motion and sensation of spinning a bazillion times around.

Around 6:00 am, I couldn't take it anymore.  The spinning had made me sick enough to vomit, and I was worried it wasn't leaving.  I was so disappointed and scared.  The last time vertigo hit me badly, I was spinning for over 24 hours and then had residual dizziness and a really terrible foggy head for about 3-4 months. I did not have time for this.

I had been looking forward to this day for a week or so.  Jon Schmidt was playing at our counselor Christmas luncheon, and I was anxious to visit with friends that evening. I was so angry that this stupid disease I pretend not to have had to come back today.  But, I guess there is never a good time.

I attempted to get up; Mistake #1.  I got out of bed, tried to shake and move my muscles, stood up and walked directly into a wall. That sucked.

I walked out through the hallway, into the living area of our little basement where Blair was sleeping on the couch (he snores, I suck at sleeping...it just works for us most nights...no judging, we really do love each other).  He was dead asleep and I was in tears, sobbing. Poor guy probably really enjoyed that. He helped me back into bed and got me a bucket since getting to the bathroom was not feasible unless I wanted to crash into four walls before I got there.

I prayed and prayed I would be able to go to work and enjoy my day and enjoy my Christmas. 

Prayed.and.prayed.and.prayed.

I just did not want this to impact my kids' and their Christmas. I was so bummed.

Really, miraculously, I was able to go to work (late), but I got there by 10:30 and made my luncheon.  Not sure it was a great idea to be driving, but I made it...safely.

The worst of the episode only lasted about 5 hours.  I had intermittent bouts of it on and off for about a week or so (one while at Toys R Us...try walking around that store after spinning in a tea cup...it makes you CRAZY!)...but, overall it was okay.  I got better for Christmas.

I am feeling much, much better...I'd dare say nearing 98%, but my perspective has changed.  I rarely talk about it; I guess I have felt as if talking about it gives it power and reality...but, that is not true. I have hope.  I have hope that when I have my next MRI in June, it will be okay. That my choice to not yet take the disease modifying daily injections is okay.  My neurologist, who I ironically met with one week before this last episode, responded to a question I asked about whether or not there is any chance these lesions aren't MS by saying..."Yes, there is a chance."

I kinda took that and ran with it.

 I know the odds are not stacked in my favor (for my experience and my specific brain lesions - there is less than a 5% I will not have any more lesions appear within two or so years). 

But...odds can basically kiss off in our house - One of them wrapped his arms around my neck and told me he loved me yesterday after kicking and breaking in half a gargantuan vase my mom housed in her family room.
(That particular little "odd" knows how to work his Mama)

I am so happy I am feeling good today.
I've spent so many sleepless nights in tears, worried about whether or not I would be lucky enough to have the opportunity to be healthy enough to spend time alone with my grand kids.  I've spent so much energy worrying about Blair and how his role of caregiver in his lifetime will most likely double.  I've made him promise that if both Deak and I get to the place where we need 24 hour care, that he will choose to keep Deak with him. I can handle a home, but the thought of putting Deak in one, broke my heart in half. He begrudgingly promised me, but mumbled that he would keep both of us under his breath.

I'm not going to be that person anymore.  No more morbid questions, no more sleepless nights.  Hell, if I get the opportunity to actually sleep an entire night through...I am going to enjoy it.

I am good today - yay! I will most likely be good for a long time.  If I am not, I will deal with it and move forward.

I just have too much good happening to be stuck.  I have hugs and cheerleading competitions and underwear fights and Yo Gabba Gabba episodes yet to be seen for the 450, 000th time.

I am present.

happy.birthday.to.me.

"Abby, is that seriously the same underwear you were Saturday?"

"NO! Why do you always think I am lying? I AM NOT LYING!!!!!"

"Abby, you are wearing your cousin's underwear; you do not own those. Therefore, I know you haven't changed them since you slept at her house Friday night."

"MOM!!! They're MINE!  WHY DO YOU NEVER BELIEVE ME???"

...amidst stomping and arm thrusts....

"Abby. Just change them. Now.  Your cereal is getting soggy."

...don't for one second think it ended there....I just figured the all caps yelling and screaming was getting a little redundant....

Betcha you never had an underwear fight on your birthday.

...Only in my life...

(She eventually changed them after being threatened with death, thankfully.  I reminded her that it was my birthday and  fighting about 3 day old stale underwear was not on the top of my list as far as celebrating goes.

She kinda smiled, and said..."Oh ya, I forgot about that.")

Totally feeling the love.