Thursday, December 30, 2010

Guilty

Yesterday I was talking to Andi about guilt. I threw the word out there and she questioned what it was. I explained it as a feeling you get in your tummy when you know you are doing something either wrong or not nice. She said she understood and that was the end of the conversation.
Cut to Target a little later, I tell Andi to pick out a box of cereal, she grabs a big box of Lucky Charms, I say no let’s get this box (generic) she whines and says she wants the one with the leprechaun. I compromise and say then get the smaller box with him on it. Yes I’m cheap. So we finish up our Target trip and get home. I start unloading groceries and I see the generic Lucky Charms. I am totally confused. Andrew makes fun of the box and I say that isn’t what we got. I call Andi into the kitchen and ask her if she got that box of cereal and this is what she says “well I felt my tummy hurt like I had to poop but I didn’t have to poop it was, what is that called? Guilt? Yeah guilt. You said not to buy the big box and I wanted it, but then my tummy hurt so I put it back and picked up the other one.” Then she just walks into the other room. I stand there in awe. She listens. She listens.
Keep voting! 2 days left!

Wednesday, December 29, 2010

Holiday Miracle Fashion Show

I am so proud to have been a part of this wonderful charity event for Phoenix Children's Hospital and so thankful they interviewed me and let me "plug" CDKL5.
Watch and see how cute the kids are all in the fashion show!
A couple days left, keep voting!!! Lily had 2 large tonic clonic seizures today amongst all the small seizures she has. We had to add yet another med to her huge daily regime of medications. Please vote, let's cure this stupid disorder! Don't forget to comment that you voted!

Ivanhoe Couture Holiday Miracle from Missionary Films on Vimeo.

Monday, December 27, 2010

Ok Now I'm Begging

I truly believe December is the most wonderful time of the year. I love everything about it. I love the hustle and bustle, I must because why else would I still be shopping Christmas Eve Eve? I love the crabby people who you run across and the happy happy joy joy ones too.

I love the smells, the baking, the decorations, driving around looking at lights, the mall Santa Claus, trying to get the gifts for your kids that will bring the biggest smiles, making evidence of a visit from Santa. I love it all. I love that my birthday is in the crescendo of it all. I get to celebrate my birthday at the most wonderful time of the year. I love December.

But December 2002 my opinion changed for awhile. I found out I was pregnant December 2001, but by 2002 I had a 4 month old I was afraid for Santa to hold because what if she would have a seizure with him. We had a 4 month old that had a total of 4 very large grand mal seizures on Christmas day 2002. And not much changed by 2003. And 2004. And 2005. And 2006. And 2007. And 2008. And 2009. And 2010.

My attitude has gotten better over the years, but you better bet I still don’t wish every Christmas morning Lily was tearing into presents, smiling big over her gifts. Not propped up watching her brother and sister open gifts and then have a big seizure amongst it all.

Every single time I watch her have a seizure I am taken back to that first one. I am frustrated, angry and mostly sad. I want so much for Lily to enjoy everything she is surrounded with, and maybe she does, but I want her to have fun. Smile, laugh, care about the gift we are showing up right in front of her face.

When I think about all we’ve gone through with Lily, I am reminded of how far I have come with my acceptance with her, but I am never very far off of the reminder of all that I am angry about missing with her.

Yes I stay positive and I love that little girl with every bit of me. But I so selfishly want to see her how I feel she was always meant to be. I want to see her and her sister Christmas morning running to the tree. I want to see that. I want that more than anything else in this world but it won’t happen. But it could happen for another family down the road who has a child with CDKL5 but never have to suffer the way Lily did because we raised enough money and awareness to find a cure and if not a cure AT LEAST appropriate treatment.

We are just a few days away from closing up this Pepsi voting thing and we are currently in 12th place. I see there are 3 (3!) animal causes in the top 10 that we should be replaced with. I love animals too, but can we even compare a child with an abandoned cat? How can priorities be so confused?

I am just pleading today, tomorrow and the last few days of 2010 that we all vote each day and tell our friends and family to do the same. Let’s push us up several places and get this thing done. Our kids need this more than any cat does. Hell I’ll take in several of those homeless animals, if we all did, they certainly wouldn’t need $50k would they? Let’s put the money to a cause that will save lives and families well being.

Please. And don’t forget to go to the contest post and comment if you voted.

Text 102973 and click the widget on the right of the screen.

Peace and love to you all!

Sunday, December 19, 2010

CONTEST!

Ok I have never done a contest before, but in efforts to win Pepsi Refresh this month I am going to do one. My lovely friend Amy over at http://www.babiesnbags.com/ has offered two $25 gift certificates to her awesome online store in efforts to raise money for CDKL5 Research. Babies 'n Bags is a local owned business ran by a talented mother/daughter duo! Take a few minutes and browse the site, I bet it won't take you long to find something you want.I've got my eye on a cute apron as we speak.
So here are the rules and we are going on honesty here, make the right choices (that is said in stern motherly voice to make anyone who is cheating feel guilty), all I ask is that you vote every day and when you do come back here and put your name in the comment box. If you vote daily, you can comment daily. Two winners will be randomly selected by Andi Jane!
First way to vote is text 102973 to 73774
Second way is to vote at Pepsi and don't sign up through facebook, make an account and vote there (the widgit is on the top right, just click on it)
Thirdly is vote via facebook http://www.facebook.com/apps/application.php?id=263136462520 (it is much easier to be my friend on facebook and click on the links I post daily)
And that is it! Vote and post in comment box. Just your name will do, but if you want to sing my praises you can do that too (although it may make my head large, it won't help you win). If you are mean however, I bet Andi won't pick you ;)
Winner will be named January 1st! (make sure to leave your email in the comment or a way I can reach ya!)

Monday, December 13, 2010

Just because....

If a song is ever to bring a smile to my face it is this one



what doesn't bring a smile to my face are all the dumb spam comments. so uncool.

Wednesday, December 8, 2010

Prayers Please

I found out I was pregnant December 2001 and shortly after those two lines were pink I found myself all over the internet. I didn't know the first thing about why my boobs hurt, why I was crying at a drop of a hat and the next minute attempting a drop kick to Andrew and I found an August 2002 expecting club on Ivillage and joined there I got my questions answers and sometimes just an offer for a virtual frypan to hit Andrew with if needed. Cut to 9 years later, I still go on that board daily (we've moved our meeting place, but you get my point). Yes people will say I don't really "know" these people, but I beg to differ. I've shared with these ladies more sometimes than I am willing to share out loud. We have seen so much together and the fact that so many of us are still coming to that board daily for 9 years says something. I've met a few lovely ladies in the real world and love being a part of this group. And right now we have a tragedy going on and I am asking for prayers for a very special little guy named Collin. He has an awful disease called NMO that he has been bravely fighting for years now and right now he is very sick. http://www.caringbridge.org/visit/collinsquest
His amazing parents have moved mountains to make this little boy comfortable and receiving the best care possible and right now they are praying that God's will be done. I think we all are praying for a miracle and we know God is able, but we pray his will be done.
Please join me in storming the heavens with prayers for this amazing family.

Monday, December 6, 2010

Fun Day!!

Ok back to splash for a cure a wonderful woman named Christina who is creator and owner of a fabulous children's clothing line called Ivanhoe Couture donated a sweet tutu outfit to our raffle. Well she alone set up a fundraiser for Phoenix Children's Hospital at a luxury resort in Paradise Valley that included a child fashion show and she had our 3 monkeys in it.
I thought I would loose my mind back stage. For some reason I had the only children running like wild animals. Apparently I have no control. Most kids nervous around strangers and in a strange place... not mine.
The outfits were adorable! Her thing is blinged tops and tutu's and cute hair accessories. Well Lily and Andi looked simply sweet enough to eat. And she had a Johnny Cash shirt for Ollie and it says "Baby in Black". It was adorable! Ollie of all the kids was the most comfortable on the runway. Seriously, they clapped and he just ate it up. The child isn't even two. I figured I'd have one model in the family, I just didn't think it would be a boy.
My friend Stephanie emceed the thing, she is a local celebrity here and the host for a local morning show called Sonoran Living, so the kids already knew her and it was funny because Andi Jane came out shy and Stephanie said "she is not shy, show them your stuff" and then Andi strutted down the runway and at the end blew kisses! So maybe we'll have two models. I was more hoping for doctors....
I got to push Lily in her chair and I was not prepared to be handed the microphone and describe Lily's disorder. Ack! I sucked, but Lily looked so pretty it didn't matter.
They also had some very special models, patients of PCH who were well enough to come. We met a little girl named Alexa who has Spinal Muscular Atrophy she is 3 and just such a doll! Seeing her with all her equipment made me sad to see how much some parents have to deal with and made us feel blessed that Lily, yes has an awful disorder, she is a healthy girl. And just so precious. She does not love fashion. She refused to open her eyes when we had the cute hat on her. Take the hat off, eyes open. She is so funny! They did an interview with me and she had her eyes closed the whole time. Anyway, it was an awesome day!
Here are some photos of the busy day. (which I ended with a 7 hour shift at the restaurant, needless to say I'm spending today relaxing! Well as much as I can with wild man Ollie)



bunch more being added to flickr

Saturday, December 4, 2010

Early Christmas for Us

So after almost a year of denials and appeals and with the help of Lily's most awesome PT she finally got her TAOS Orthotic System! Now this thing is incredibly different for Lily. She is not used to be all strapped in. Not used to heavy shoes. Not used to standing so freely. This was her first attempt and I think she did pretty awesome. Since it is a video taken from my phone I am not able to edit so no need to watch all 5 minutes, but Lily is incredibly cute so maybe you will. But we just wanted to share how she is in this at the beginning and I hope to update with her progress!
Happy December folks. After coasting through Halloween and Thanksgiving, I am ready to throw myself into Christmas and making the end of this year make up for all the crap it gave us earlier.
We're sending 2010 off with a bang!

PS we are still in the running for $50k from Pepsi! Keep voting! Let's make December our month! Text daily 102973 to 73774 as well as vote on Pepsi Refresh and Facebook!


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