Momma never said there'd be days like this

A nurse did though. Once in the early days after our final diagnosis.

I can't tell you which doctor or specialist office she was in. I just remember her saying,"My heart goes out to you. I too had children 12 years apart and my youngest has cerebral palsy. It's a whole different world. It's gonna hurt more often than not and your gonna have to smile right through it. It's gonna make you stronger than you ever knew you could be...and weaker than anyone will ever see. I feel for you dear."

Weird that I remember every word but not who she was or which office. I was in a total daze. The memories come and go.

Around the same time a mother in the Rett world also said....,"This is gonna suck. This will be the hardest thing you've ever done. Day after day. You are going to have to CHOOSE to be happy. There's no other way. There's no way you'll survive it and you have to be there for her. You will be her everything.'

That's a big no shit.

Most days I trudge through. Fighting for others. Raising money for a number of causes. Doing research,writing,data entry..advocating..always advocating.

I remember asking my friend Shay in the early days how she did it. How did she take care of Miss Lyss all day and all night long and still be everything for everyone,fund raise and advocate. She didn't hesitate,"I have to. For this to make sense to me. To keep me from curling up in a ball and wanting to die. I HAVE to."

Simple answer and exactly right. It's like I have no choice. There are days where I just want to take care of Abby and pretend we're just a little different. But there's nothing in me that can tell anyone no. Nothing in me that doesn't go above and beyond what I was asked to do.

Why? Cause I'm a fixer. Always have been. I used to be a workaholic. One of those employee of the month every month..Manager of the year types. I did my job and everyone else's too. Everyone knew if there was something they didn't have time to do, couldn't do or didn't know how to do it,I would find a way. Seriously. I can give references.

I can't fix this for me. I can't fix this for Abby. But I can be there for others. I can raise money for research and awareness in hopes that THAT will one day fix it. Any part of it. If that promised cure gave her anything. Her voice...words...her hands...her strength,,her breath.

I have been up for going on the 3rd day. I'm exhausted. So much to do. Don't know how sometimes anymore.

Off I go to smile right through it.

Too hot for Horsies!!!

Most of you know that Abby has been in Hippotherapy for a year and a half. On days when it is over 95 degrees it is too hot for the horses. When it's too hot they do their therapy in the shade or in the Carriage House. Anyone who knows Abby knows she is extremely allergic to dogs. When I turned around and saw this I almost stopped breathing...until I saw it was a Shitzu. One of the few breeds that is considered hypo allergenic. Look how thrilled she is!

She was throwing water ballons at me. Loved it!

She got to paint the worse along with the other kids. Abby's is the purple heart looking one and the green below it

Just tossed the balloon with some help from MaryJill

Picking up floaties.

We love that they still have activities with the kids even when they cant ride. Abby giggles all they way home.

Joy in the simple escape

Even though I went to Indiana to help with Brookie Bean I had a tremendous time with these two gals. My sister and I dont speak so being with twins that ADORE each other was really heart warming! Dorking out!

Having some fun before we left for the airport

Ok girls..Act like grown ups!

Name that McNamara!

There's that Shrek head again. Holy smokes!

Giggle!

She is an absolute blast!

Sunset through the trees in Kel's back yard..Taken with my cell phone. On day I'll have a real camera again. I love outside pics..I so rarely get outside I think I appreciate a beautiful place more

Just Chillin

How peacful os this with the lake right through the trees?

Dork a float!

Taking a lake break!!!

I had such a lovely experience with Kelly and her family I decided to share it in several different blogs...in case that wasnt already apparent.
On Sunday night Kristin and Josh took us on a cruise on their boat and then a swim on Crooked lake. Just us. No kiddos. Very peaceful. This is their boat. So comfy and relaxing. I can totally understand why Kelly loves these little escapes.

Josh and Kristin...Yes they did have clothes on....or did they????

Me and Kel after me floating and swimming in the lake for a while at sunset.

The crew. Being awesome!

Kels house can be seen somewhere in this pic. If you know where to look!

So shallow we were actually sitting on our butts here

Beautiful

Before I jumped in and got all Lakey smelling! Love ya Kel, Kristin and Josh. Had a great time!

The Happy Hosts. How cute are they?

Goon on crooked lake...a self portrait

Boston Clark "Monster Mash" Butler

During my visit to Indiana I also got to spend some time with this lil man. I hadnt seen him since he was 3 or 4 months old and still hooked up to oxygen. He is such a big boy,,not in size yet but definately in personality. And yes. He's kissin the ipad! You forget sometimes when you deal with Rett all day long that babies that can move and use their hands can be exhausting. He is so stinking cute though.

Lil man standing up on his own. Look Ma! No hands!

The day I left. Taking some photos in the yard. Man I thought the twins made my large dome look big! Boston makes me look like Shrek head!

His first experience with the iPAD. I thought Kellys face was gonna split from smiling.

One last snuggle before I go. Love you Lil Monster Mash!

Brooklyn and Family

Hello everyone!
I spent the last week in Indiana with the most wonderful loving family.
I know alot of you know the Butler family from Indiana. Kelly is an incredible mother,friend and inspiration!
Like many of us..actually most of us.Kelly had to get little Brooklyn a gtube last week. 2 years ago right after Abby got hers I told Kelly if Brooklyn ever had to get one I would come and help so I did. This family put in a tremedous fight to keep her eating but many times Rett Syndrome just wins and you have to do what you have to do. This is the McNamara/Butler crew. Actually Kelly and Kristins Dad Mike is missing from this pic. What an incredible man. Made me miss my own Daddy. This family takes care of each other like EVERY family should. Being with them was exactly like it it is when I go visit out West except it's not Just Kelly that gets it. If it takes a village were ever true this house would be an example. From sun up to sun down eveything revolves around each member and the family as a whole. Something we all wish we had. They all really do love each other so much and it shows in everything they do. Total teamwork. I was in awe of all of them. Every single one.
Suzy and Kel. What a Mom and Grammy she is. Unexplainable. Love love love this woman. So nurturing and understanding.So incredible helpful in a never complain,it's my reason on earth woman..I may just cry
Kelly and Kristin and yes...I can now tell them apart!!!!
Kelly, Boston,Brooklyn and me. If I didnt have Abby to get back to I dont know that I would have left.
Me and Brookie getting some cuddles in Saturday afternoon. She is such a trooper. eating and taking bolus feeds. What a tough lil studmuffin she is!
Kisses. I love you Princess Brookie Beanah Weanah!
Just a few days out from surgery. Look at that smile. Nothing better.
The day before I left I loaded the kids up with apps that Abby likes and they LOVED them. They both were so amazed by the iPAD. I think the best was seeing Kelly watch her kids faces and reactions...Priceless!

Lot's more pictures and stories to come!!!!

Your Chance to Win a $15,000 Eyegaze Computer!

Good Day EVERYONE!!!!!

Oh how I wish I qualified for this ... but since I am part of Girl Power 2 Cure, I am not eligible.... but YOU ARE!

The MyTobii P10 is THE system Abby has been tested on, the one most used in Rett Syndrome...at least with the girls we know. AND Girl Power 2 Cure is raffling one away!

Can you imagine? A voice for your child? You can ask her what's wrong, what she wants? She can tell you she loves you.... She can tell you what hurts?

How many of you have dreamed about an eye gaze system? I know that I wish we had one. I wish every single day.

Here's your chance to get one ......

All while raising funds to support Girl Power 2 Cure! No more fighting with the schools and insurance if you win???

How does it work?

>>for those in need of a system<<

Rally your friends and family to purchase tickets in your honor! If their ticket is drawn, you win the MyTobii P10 Eyegaze System and they win a $500 Visa Gift Card.

**Open to US Residents Only**

You print our RAFFLE FORM AND TICKETS, collect donations (by check or online), and mail in the completed forms and tickets.

You can also start a TEAM PAGE to get online donations for your team.

REMEMBER: Whether you get donations online or send checks via mail, you must mail completed RAFFLE FORM AND TICKETS to Girl Power 2 Cure for them to count.



>>for those wanting to support a team/person in need<<

PRINT RAFFLE FORM AND TICKETS and mail with donation to:

Girl Power 2 Cure
2891 Breakers Court
Amelia Island, FL 32034

Or see if they have an online team if you would like to donate with a credit card. If not, contact them to see if they are interested in having a team so they can take donations online!

Visit the P10 RAFFLE WEBPAGE for more information and official rules.


KEY LINKS:

DOWNLOAD THE
RAFFLE FORM
AND TICKETS

DOWNLOAD THE
INFO FLYER

START AN ONLINE
FUNDRAISING PAGE

Good luck to EVERYONE!!!