Better late then never....

seems to be the theme for Hailey's 6th Birthday.

She finally got her birthday party last week...a small group of 6 girls, here at the house.

I am sad...my little girl is growing up...I didn't know she would be my last typical baby...I feel like I lost a lot of the fun stuff from ages 3-5 as I was bombarded with trying to make Hudson o.k.

I have lost and gained so much....all at once.

Hailey is  gift. 

She is all those *little girl* things when you think of a girl.

She has been working so hard to not suck her thumb.

In a way....I really don't care (except for the thought of the huge ortho bill that will linger in our future)

When I see her suck...I still see my baby...and I want to hold onto that.

I have pressured her to stop...just because the dentisit has told me she really needs to.

Deep down....could care less...other than I don't want her doing it in her teens! 

The other day we were driving home from church and she was tired and it was a typical sucking thumb moment. I looked in my mirror and noticed she was in ready position...I asked if she was sucking her arm and she said "no...just smelling my arm." 

She sucks her thumb and the other arm lays across her face and she smells it...weird, but just one of those things she has done since she started her thumb sucking.

I know I have said this beofore, but she is a great mommy and mommies helper!

She is a little nurses assistant...and she is a nurse.

I love her caring, mommy ways...and so does Hudson!

So my baby girl got her Wizard of Oz party, and her piniata with lots of candy, and the girls made shrinky dink oz charm bracelets. She deserved a great party. She has become so understnding and flexible because of Hudson. She never pitched a fit, or cried, or got angry because we had to postpose the party.

She was just happy to have the party, her pinata and her friends!

Best Friends since birth! ;)

Things that make me go hmmmmmmmmm.........

 Why do I have this thing called Mitochondrial Disease......

all kinds of endless seizures.....

a plastic button in my tummy.....

gunky - gurgly stuff in my throat......

tummy aches and throw-up.....


Why can't I........

play with my brother and sister......

keep my head up and steady.......

roll around......sit on my own......crawl.......walk.......run........

use my hands to play and grab things.........

use my eyes to see things.........

use my mouth to taste....suck......drink.......

use my teeth to chew.......

Why can't I .........

tell doctors I am tired..... of blood draws...hospital stays....tests...exams.......

tell people how I feel other than crying...........


smile from ear to ear...............

laugh when my mommy tickles me............ 


Will I ever.............

giggle..........

wrap my arms around my Mom and Dad.......Brother and Sister.....to tell them I love them

use my heart-shaped lips to give them a smooch...........

use my voice to tell my mom I know how much she loves me..................

use my voice to say "Mamma I Love You!"

Do you know.......

I am here....


under this layer of seizure saturation....


zombie inducing medications......


I am here....


under this disease that depletes any energy I have....


and the lack of energy I make....


I am just a boy.....


wanting to do boy things........


I didn't ask for this.......
 
Things that make me go hmmmmmmm.............

Shame on me

I have been BAD.


My mom has some friends visiting from Chicago that we have known a long time, They haven't visited us in about 10 years. They came on Monday and leave Thursday. I was invited to go out to Happy Hour at Anthony's and Fred stayed with Hudson and the other 2 after they were dropped off from a birthday party.

Well, normally, my kids would be up now and ready for school BUT....

I am feeling guilty to wake them...

Happy Hour turned into us closing the place DOWN!!!!!

We got home at 12:30 last night!!!!! (or I mean this morning)

Thankfully....

I popped two ibuprofen and went to bed. I have to work today. I gotta get those kids up.
What if they tell their teachers they are wiped because their mom was out all night...

I am too old for this!

It was fun though :)

Hudson had all his meds and feed, at 12:30 a.m.

Poor kid.....just  a little angel

and I figured I don't go out too often....




there will be NO wine with dinner tonight!!!! ;)


(wish me luck...off to wake the sleepy-heads!)

Getting attacked...feeling the love...

Now that the weekend is over, I feel like I can breathe.....

I have so much to do in this house...
I shouldn't be on this computer...
it eats my time.

But...

Hudson is sleeping, and the house is quiet and it is good for me to get it out...
what stews in my mind.

I have to say...

this past week felt like a full on attack...
I just felt like the enemy was trying to chew me up and spit me out.

The timing of Hudson going into the hospital...
with Paul coming home and Hailey's birthday. (not like there is good timing for a hospital stay!)

We basically had one day...
Saturday.
Hailey's birthday.
I was so grateful we were home to celebrate...
BUT..
it was my one day home...
Paul had to leave to go back to Vegas on Sunday and so...
there were things we had to talk about...
things that are HUGELY stressful...
like coming up with 20% on this new town home...
and managing 2 homes at the same time...
mostly just the financial crud that comes along with any major purchase...
that eventually you have to talk about...
especially when the closing is the 15th of next month!

I am tired and weak.
I just feel it....especially over the weekend...
because I just felt like a good cry was the best medicine for my tired spirit...
and yet I held in as much as possible for the sake of my birthday girl.

The enemy was speaking lies to me...
speaking lies to Paul...
we both recognized by the time he was ready to fly back to Vegas.
I cried under my sunglasses the whole drive home from the airport.
My kids were fine this time around.


I am feeling a bit extra emotional...
but I have that one voice...
the voice of God...
telling me...

You are not alone...I am with you...

and I have another voice saying...

I can't do this anymore...I didn't sign up for this...my son is catastrophically ill...my husband works in Las Vegas...my finances are a huge stress-or, trying to purchase a second home and pay for 2 households on 1 pay check, when do I get some relief? How do I keep going?

It's when I look in the eyes of my 3 H's....
I know I must keep going...
I know God will see me through...
He is walking every step with me...

In a way...
He is enabling me with the kind of amazing strength he has given Hudson...
to fight secondary illness...
a simple cold can easily take his life...
yet he is here...
and God gives him this amazing strength to carry on...
and fight...
and be a testament to His amazing love, grace, and strength.

I see that is what He is doing for me too...
because, honestly?
When I look as a spectator on my life...
He is the only way I am doing what I am doing...
I give Him the glory...
not me.

I have amazing people in my life.
I don't have a huge family, in fact...
we are pretty small.

My mom is my biggest cheerleader in all of this. She keeps me going.
My brother...I love him...he isn't around as much as he used to be, but he always calls, and I know he prays like mad for us.
Fred...a fathers love I have never known...I am so grateful to have him in my life.

With there day to day existence in my life...
it makes things so much more bare bale.

My mom and Fred gave me a gift over the past 2 weeks.
They did  a mini-makeover on my bedroom.
What used to be a mish-mosh of whatever...
is now my own little warm and cozy room.
It looks beautiful...
they spent one entire weekend painting my room, and yesterday Fred put up new curtains and rod.
I love it!
It actually feels like a room I want to be in.
I have always put my time and energy into every other room in the house but mine...
because I put myself last on the list...
this was such a wonderful treat...
and gave me the "lift" I needed!
I should have done before and after pics...but I didn't, but anyone who has been here will see a huge difference!

I am glad I have the support from family...
they see me through....
each and every day...

As for Paul and I...

well....we had absolutely NO time together this last visit...
the stress of our current situation overshadowed time well spent, so...

I am going to try and fly out maybe next weekend and spend 2 days in Vegas...
just him and I...
Fred tells me to GO...
he and my mom will cover the 3 H's....
Are they great or what?







God has placed some very special people in my life.
I know He knows the "big picture" I trust in that and His provision in my life.




***************
A Picture Extravaganza......

This was the Sunday before heading to the E.R. 

My mom and I took the kids bowling...can you tell they love it?

My mom brought the kids after school one day and I thought this was super cute...

Hailey was reading a book to Hudson...(she is totally into reading...it just clicks and she is reading so well!)

Birthday breakfast for my 6 year old!

(Is that the look of a teenager or what...oy vay!

6 going on 16!)

Hailey gets one present with breakfast which was a whole outfit, including necklace, and hat, from Justice For Girls...
she loved it, and wore it all day Sunday too! Thankfully she has to wear a uniform to school else she probably would be wearing it today too!

Hailey and "Unc-e" (my brother) Birthday dinner

SO SILLY!

Mommy and daddy got her a old-fashioned musical jewelry box with the ballerina inside, engraved with her name...she loved it!