MDA.ORG Stride and Ride Finale

Wow everyone, what a great day we had. Above is Deb/Me and the kiddo's holding up Luke's sign. MDA.org raised $240,000 from 7:30am-10:00am and that doesn't even count the $115,000 we raised online. It's incredible. And so very humbling.

Luke's team raised $1,295.00 and I was informed that Luke had an amazing first year! Thank you loved ones...my heart is so full and so elated.

So...the fun part! Ericka and I got there at the crack of dawn and I was amazed at how many people were already there!! Note to self for next year: Get there at 7:00am!

Thank you Team---you really made my day! Below are the details next to each picture.

It was a touching event! I hope we can see you/your families out there next year. I think you'll be glad to come as it's an amazing experience.

Me with Luke's button and sign. Actually, I made this sign in the hopes I could get on the news!! But....no camera's were in sight. Next year..I'll hunt them down. lol.

Ericka my BFF and the master photographer. Thank you honey---your support and friendship mean the world to me. I love you.

Our team!! Love you all! I love this picture...it looks as if our team is HUGE. We laughed about that. (see Luke's sign on the left...we had our own table)

The Willams boys. Reid and Cole. (our little team angels)

Bryan and April. Ok....Bryan is our master walker. In fact, he and his boys were our master walkers and walked for the entire team. LOL!Some of us just wanted to have our little party at the table...but April/Bryan's boys (Reid and Cole) insisted they walk for Luke. Wow. I was so touched!! Bless these little babes! Thank you Bryan for walking for the entire team! We love your family incredibly.

My BFF Debbie and our team angels Josh and Jordan! They were so cute---they walked with me and held up Luke's sign. So adorable. These kids are actually mine. I'm there 2nd momma. (they call me Aunty Aner).

This is my Grandmother's friends from her home team! Grant/Barbara and their precious boys.

Baby Ella giving Luke sugars and kisses. Is this not adorable??!!

Ericka! This picture is blurry...but I had to post it. So cute with all Luke's buttons.

Meghan/her momma and her precious boys! Meghan..I loved you being there honey! Meghan was one of my nurses that came in to take care of Luke. We love her.

Ok..the most touching part. All our team angels (the children) were handing me money for Luke! It was so dang adorable and so sweet. I have to say...you really ought to hop over to April's blog. Her kids are still talking about it and I'm convinced that this type of thing is the best thing to give to our children. They really come away moved.

Video below...it's long! Sorry!

Hope to see you all next year!

TO ALL THE BLOG FAMILY THAT DONATED:

WE LOVE YOU SO MUCH. PLEASE KNOW THAT OUR PRAYER IS THAT THIS MONEY WILL BRING OUR LUKE A CURE. EVERY $1 COUNTS AND YOUR LOVE AND COMPASSION HAS MADE A HUGE DIFFERENCE NOT ONLY IN THE LIVES OF OTHERS...BUT OUR LUKE'S LIFE.

WE LOVE YOU DESPERATELY--

THE HUGHES FAMILY

Spiritually deep for the special needs mother...

Ok, my friend Trish blogged about 'what not to say to a special needs parent'. It's fantastic. I have thought about this time and time again and YES...I've gotten every single one of those offensive comments from people in my short time as a special needs parent.

Man..it's so hurtful too.

I have never blogged about my feelings in reference to this subject until now. Mainly because it's always on your heart...but to put it in writing is kinda deep for me.

I say this because I'll never forget the time I was in the NICU. It was day 'somewhere in between 1-94 days). I rushed in to see my child from my 45 minute commute, exhausted from breast pumping off and on all night, serious sleep deprivation and ready to see my child that I could not see all night long. Yes...my little hell.

I come in and see this sweet little nurse with this huge binder next to my child's NICU crib. I ask "are you my nurse?". She says kindly back "no, I'm an intern". I'm perplexed as most interns are holding your baby or walking around aimlessly staring at other nurses.

So, I notice right away she has Luke's medical binder. So, I say "why do you have my child's medical binder?". She kindly and sweetly says back "Oh, well, the nurses said that your child is the most extreme case in the NICU and it's the most interesting case to study".

Ok. Deep breath. I won't go into the details of my next action or comment too much. You can only imagine. All I'm going to say is one word "Administration". Yes, I walked out and headed straight to the nurse administrator and bitched them out for a) not getting my permission and b) just because I was so upset and emotional...I needed to find another excuse to bitch them out again. Literally...I bitched at the charge nurse/administrator in a conference room about my patients rights, my feelings of being hurt, you name it. I pulled out every legal jargon I could because guess what.."it made me feel better and my heart was dying inside".

My true heart hidden deep within was just so upset. I was deeply wounded that they picked my son's case to give to an intern. My baby 'was not normal?'. I was heart broken. I would go into the pumping room and weep. Cry beyond anything I've ever cried before. I was utterly heart broken that they could label my sweet Luke like that. He was innocent. He was mine. He was perfect to me. Damn them for giving that girl my baby's binder. Damn them for that. Damn those people for not wanting healing and for not wanting to claim healing over my child. Yes..there were some of those nurses. Praise God for those. But..they were among few..not many. My sweet blog family... I say this to you ..it was a lonely place to be. Thank God for the Ericka's, the Lisa Allen's, The Debbie's, the lulu's, the church...thank God for those people that walked in that NICU and said "He's perfect Andrea..he's beautiful". God..I craved to hear those words.
Because, the reality is...the nurses stared at me and talked behind my back. Because I claimed healing over my child. I would not label him. My other little hell of faith. (that was hard)

That was my gift from God and how dare them label my precious gift. God knows my heart people. And after writing..I think I need some more healing time. (God will get me there)

So, here I am 2 years later with much experience under my belt as a special needs parent. I've heard it all, seen it all and read it all. Especially from my other special needs friends.

So...my spiritual deepness and my 1 point that I wanted to make originally here. Sorry! I veered off a bit.

Here is the ONE COMMENT from people that always has me perplexed, thinking deeply and trying to find normalcy in the words.

Here is what I've heard since I've had Luke and it's never been the same for me.

You ready?

"We are so blessed to have healthy children".

"I am so blessed by God to have healthy children".

"God sure has blessed me with healthy children".

"I just thank God for blessing me with healthy children".

Yep. That's it. Those sentences above have kept me up at night. They've got me thinking so deeply as here is what most special needs parents say to themselves after hearing the innocent minded parent say this so freely from their mouth.

Here is what we special needs parents think:

"So, I guess God didn't want to bless me with healthy children".

"Wow, God? What did I do?"

"So, my child isn't healthy...does that mean I wasn't blessed by God?".

You get the picture. You see how this can enter a reasonable minded momma's heart. Oh..and God forbid you say this to a parent that doesn't believe in God. Man..your asking for serious hardship as they tend to get mad at God. (for good reason as they know not what they know?) And for those that are mad and believe...I get you. And..you my love..are not alone. It's such a process that only you are allowed the time to heal from. You and God. You'll get through it.

So, I have gone over and over these innocent words and each time I hear it..(and we always will special needs friends) I always say (and please read this entirely)

"God, hmmm, very interesting...I'm so thankful I know you, I know whom you are. I know that you love me, you will never forsake me, you have never left me..this I know. And, I know that all things are perfect from you and that your desire is for me to know you more and more and you love me so deeply that I know I'm precious in your sight..because you say so in your word. So God...thank you for that Beth Moore bible study that broke down the meaning of the word "blessed" for me. I'm so glad that I know what that word "BLESSED" really means in the biblical context. Thank you for showing me that the word "BLESSED" means..." to be in God's presence". Because Lord, I know one thing..my baby is wrapped in your presence. You've shown me time and time again through prayer, answered and unanswered that your presence is there in my Luke. So Lord, thank you. Yes, my baby is blessed with health ---

Translation: "I'm thankful God's PRESENCE is in my son's life. (period)

Yes Lord, You so are present. You so are.

For those special needs parents out there...I love you desperately. I thank God you think the way you do. Because we need 'Warrior momma's'. And that is what you are.

A song for you...click on my myspace page: http://www.myspace.com/andjonbabyluke

For God's glory,
Andrea (mom to Luke)

Luke's 1st carousel ride

Hi bloggers, happy Saturday. It's so pretty today.

Little fun for ya: Field trip part 2. That same night...we did the carousel thing. At first...Luke was not liking it. But, when we started moving..he loved it.

Isn't this so fun to do normal things at normal places and experience normal emotions.

(i had to eat behind him as he was watching this from his stroller...Jonathan and I got hungry and God forbid Luke saw food and watched us eat) I was eating behind him and he would look up at me in the stroller and I would put my egg roll down by my side immediately and smile real big with a mouth full of food and say "hii bbyyabby".

Uggh.

Oh...what is normal anyway? (ask my friend TRISH) I love her blog..."a new normal".

Behold...little mister on a carousel!

Field Trip - "Build a Bear"

Hi everyone, shhhhhh, don't tell anyone but me/Jonathan/Luke took a field trip. Note: Wed. night...work day, a good time for no people in the mall! LOL

For work reasons that I'll go into later...I needed to tour the "Build a bear" store in the mall. So, I was planning to go by myself until I mentioned it to Jonathan and then it was all over. He wanted to take Luke. So, we packed up and off we went.

If you've never heard of the "Build a bear" store then your in for a treat. It's this great little store that allows the child to pick out their favorite bear or animal. Then, they get to put a heart in it, a sound box and it's stuffed and sewn up right there in front of your eyes. It's really cute.

You even get a birth certificate for your animal and off you go!

Luke picked THE MONKEY. NO kidding. He loved it. Jonathan held up many bears and animals and then he want crazy for the monkey!

We named him....MONKEY MISTER. (we are very original in our household)

Luke getting ready to watch Daddy hold up several different options.

hmmmm, do I want the dinosaur, bunny or monkey??? (he's thinking below)

MONKEY IT IS! We keyed in his Birth Certificate info on this computer below.

The heart was put in and then they sewed it up the back!

Here's your Monkey Mister --Mister Pie~

Note: Jonathan picked out the outfit. Are we from Texas or what?!! LOL

Luke's feeding backpack

Hi! I wanted to update about something kinda new and fun.

BACKPACK. Luke is mobile and this feeding pump hooked to an IV pole was becoming a nightmare. In the past, Luke would sit calmly in his pediatric wheelchair and watch Elmo. (for 30 blissful minutes in his wheelchair while feeding with his tube machine) Now...forget it! This child starts banging his head and screaming after 10 minutes just sitting. So....the mini zevex backpack was in order. Cecelia (our DME supplier) got this and we are just now using it.
here you go! The feeding pump is stuffed in this little backpack. It's great. Just gotta make sure Luke doesn't pull at the small amount of tubing hanging on his left side. See it below?

He's doing ok with it. He cried at first but then got over it real quick. Now, he just scoots around in his backback feeding at the same time. Isn't that crazy? Feeding on the go. There are perks to special needs babes. Truly.....! Big smile.

More to come on his oral eating....he's doing great.

P.S. I know, I know, I know. No pants! Ugghhh, so much for yearly goals! LOL

Luke's haircut experience

Whew. Talk about meltdown central. Luke absolutely hates getting his haircut. It's actually so funny to me as it doesn't hurt him physically at all and all he has to do is sit there for approx. 5 minutes. Is this normal? Do ya'll deal with this?

Lisa and I had our traditional glass of wine thereafter. Poor little mister. Honestly, me and Aunt Lisa debated whether to cut it. It was so cute long. I'm kinda bummed it's short. Daddy demanded we cut it. So..off it went. I miss it. Good thing it grows fast.

Fundraiser for my Luke--a cure for CMS

Dearest loved ones,

Oky Doky. Well, got something. You ready? I'm going on a walk. With pedometer in tow....I'm going on a walk. Read on..love you.

Just a little thing..but actually huge thing. Here goes: My little baby needs a cure. Yes, he's healed through the power of medication. By God's grace.

However..and a huge however. The last neurology appt. I went on with Luke I was pulled aside by one of the representatives of the MDA.ORG organization. (translation: JERRY LEWIS: Helping Jerry's kids).

As I was talking to him I realized that all those years I watched Jerry Lewis telethons on TV I was literally living it. I literally stopped in my tracks thinking...wow..is this for real? I'm actually one of those people he pulled for all those years' on TV moment. Isn't that crazy? Who would have ever thought it? It blows my mind. Mainly because I watched him. I actually remember sitting on my mom's couch with that hideous quilted crocheted blanket draped over it and thought....hmmm, I remember that. Not really grasping it at that age...but indeed remember Jerry Lewis begging. It was a surreal moment.

How would I have ever guessed Jerry Lewis and I would collide. Indeed we have Jerry. Indeed we have.

With that said, Luke has a "Neuromuscular disease". It's just so hard for me to say. I have embraced it....but embracing healing is one thing....living it is another.

My child needs a cure. The side affects of medication long term, the years of therapy and all that it takes for Luke to get the care he needs to live out a long term life (by God's grace) will take much prayer for him.

As a momma...I want a cure. I am here to advocate for this organization. I have too. I have to walk for the Stride & Ride marathon that the MDA organization is putting on at Grapevine Mills mall on January 26th @ 9am. I couldn't say no because at that moment this man was rambling to me about this walk-a-thon I could not stop thinking..."I have to do this...I just have too".

So, here I am..once again. Beg girl. Begging for another..yet another favor. Would you be willing to donate even as low as $10 on Luke's website that is created by MDA.ORG for donations? All donations will specifically go towards Luke's syndrome.

My goal is to raise $1000

I will be doing this every year. I pray I can raise that much for my Luke. In a way, walking is so significant. Because every step makes a difference as every dollar will make a difference.

Please understand loved ones, blog stalkers, friends, family, church family...WE HAVE THE MEDICATION CALLED MESTINON BECAUSE OF FUNDRAISERS JUST LIKE THIS THAT JERRY LEWIS ADVOCATED FOR. SOMEONE HAD TO PAY THOSE NEUROLOGISTS to do this amazing research to create a medication that has healed my Luke.
Loved ones, please pray about this. Give $1...anything. Help me Help Luke and his CMS friends have a cure someday.

MDA.ORG promised me that they are 100% legitimate and promised me that all funds go to exactly my son's syndrome. I was worried about that. They are reputable and so very gracious.

NOW---
Your donation would help MDA continue the important fight against muscular dystrophy. Check out my web page by clicking on the link below. There you’ll find all kinds of information about MDA, and be able to make your tax-deductible donation on-line using your credit card.

Click on this link below:
LUKE's DONATION SITE

I love you. Period.
In Him,

A

Blog year resolution--Happy New Year from Luke

It has come to my attention that when I blog about Luke I neglect to put pants on him.
Interestingly enough, I actually have thought about that for some time and I keep thinking..I really need to get on that situation. (thanks to all my blog stalkers and their sweet comments about 'do I ever allow my kid to wear pants') Yes..I do. It only lasts for an hour or so and then a diaper change...they come off. The truth is...I'm lazy post diaper change. And possibly an attachment to Luke's cute diaper butt.

And...The other day I walked into the living room and there was Luke all nice and calm just sitting there in his diaper with blue socks on peacefully watching Toy Story.

I started to snicker to myself thinking..."My God, if he was a grown man right now..I would be mortified". LOL
See below

So....I'll try to clothe my kid more often than not for the year 2008. Afterall, he is going to be 3 next year and I need to step up out of the baby diaper mode and into big boy toddler mode.
We are praying he will start walking the year 2008!

I will say this....my biggest goal for the year 2008 is to get a picture of Luke in his diaper walking in his cowboy boots. I've always wanted a picture of my baby in cowboy boots with his diaper butt. So...pray for that loved ones. That's momma's heart.

Ok...in honor of the new blog year 2008.....

LUKE IN PANTS.