"Trick or Treat!"

Tonight was an unusually calm night for us. It happened to be just my kids, my dad, and my self for the actual trick or treating. Grandma came later to help pass out candy! June had a great time! She has a "speech" button that was programed for "trick or treat" and "happy halloween" and was hitting it at appropriate times! She seemed to really enjoy going to the doors.

Kitty June 

The kids

I could tell some people were a little confused by her, her chair isn't quite a wheel chair and she is still in that little enough to not totally place her age stage. At the end people seemed to catch on and go with it!

June playing with pumpkin goo!

We carved our pumpkins last night and June really enjoyed the sensory play time! She loves the smell of pumpkin. I did happen to find about 1000 seeds under her chair cover, maybe she was trying to grow her own.

November 1st marks the start of Epilepsy Awareness Month. When we started this journey I never thought I would gain so many friends and such an amazing support system. This November also marks the two year anniversary of June's Diagnosis of Aicardi Syndrome. I encourage you to visit their site. www.aicardisyndrome.org There is a lot of information about this... syndrome. 

Aicardi Syndrome is a rare non genetic seizure disorder. It is diagnosed because of Absence of the Corpus Collusum, Lucna of the eye, and uncontrolled seizures. There are currently 500-1000 known girls in the world to have this syndrome. It only happens to girls. They are still working on testing to see which chromosome is effected, there is no cure....

Our girls lead a tough life. Not always a very long life, but each and every one changes the world in their own way. I am a better person because of my daughter June.

Wear purple this month, support Epilepsy!

Proud Mama Moment:

Today at school Lili had a Halloween parade. After everyone returned to their classes, I brought June down to Lili's room to get her to go home. Out side the door her friend looked at June and asked Lili if June was sick, "No, my sister has seizures. Her brain isn't the same as ours, but she had a lot of fun today! Say Hi to her!" - I WAS SO PROUD! She stood up and told about her sister with no hesitation and very proudly. Another mom was pretty impressed by Lili too! My girls, they will change the world together!

Real Tears

Today was a crazy day, little sleep, little time, and a possible ear infection. June has been up all night the last couple of night congested and upset. Today once I got home from work, unpacked the groceries and sat down for some cuddle time with my bug she started whinning. Once I called the doctor to find out how long urgent care was open for I had 20 minutes, HA! No way was that going to happen. So tylenol and mama time.

Once the Bugs and I had settled in for our girls night movie, June started crying. Honest to god real tears, pouty lips crying. I know to most people I sound a little sadistic when I say I was tearing up with joy watching her cry. June has moaned and cried for a minute or so maybe a handful of times since the seizures started (October 1st 2009). Tonight, I saw tears....

Never in my dreams did I think I would actually see tears stream down her beautiful cheeks. I was so close to video taping it, but I know that, that face, those tears have imprinted on my heart forever. There is something so amazing to have a girl like June. The two other kids are pretty typical "normal" kids, we went through life same ol' same ol' taking the simple things like tears for granted. June on the other hand. Every breath she takes is a new miracle for me. A smile, a tear, every time she says "ma". All of these things I was told she would never do.

My daughter the rule breaker!

I also have to tell about her sissy, My Lili, a real shining star. Since day one above Mama or Dada, brother or anyone else, Lili has been June's favorite. Lili is the magic one who can stop her from being upset, put her to sleep with a simple touch, and get smiles like no other. The bond they have may not be what we had thought life would be for our two girls, but they carry something that so few people ever get to experience. Their bond is without words, it's pure and deep love.

I am a proud proud mama tonight, every night.

Time Flies

Time flies when you're having fun. I'm turning this to the start of the blog. Yes, it's been up for some time, but time is not something I have had a lot of lately...

This week is Infantile Spasm week, YES I know we're nearing the end of the week, but November is Epilepsy Awareness month. Both of these conditions are near and dear to my family and I, June has both.

I will add as much info on Epilepsy as I can when I come across it. Share with your friends and neighbors. Help turn the world purple in November.

November also marks the time that I actually get started on Christmas presents. Soo much to do and no IDEA on what to start with. My mom, my sister, and I will be doing a craft show the first weekend in Nov., so I am busily getting ready for that. I'll get some pics up once I've got some stuff ready to post.

Well, for now, it's off to crazy town I go. See you all soon....