Saturday, October 31, 2009

Tomorrow begins Epilepsy Awareness Month

Tomorrow is our first year experiencing Epilepsy Awareness Month. It has been a Nationally recognized Campaign since 1968 but until we got the diagnosis of epilepsy for our beautiful four year old back in March, epilepsy was not something that we ever thought about. This needs to change. There are so many myths about epilepsy and a lot of confusion about what to do, what it is, and how to deal with it. In partnering with the Epilepsy Foundation I am going to be sharing facts here all month long. On top of that Brendan and I are going to be raising money for Epilepsy Research and for families experiencing the financial burden of Epilepsy. Now many of you may be thinking, "it's just a seizure, no big deal right?" Wrong! You couldn't be more wrong. My first fact is very sobering! The same number of people die each year from epilepsy as do people from breast cancer and people from car accidents! Pretty crazy when you think about it. On top of that more than 60% of those who die from epilepsy are children under the age of 15! So, now do you see why we need to get the word out? If you would like to donate to the Epilepsy Foundation in Avagrace's name please email me at virginia.spencer@yahoo.com. Thank you so much!

I will still be sharing my normal blog stuff but this is my focus this month! But for a cute Halloween add-on. Avagrace has a lot of difficulty remembering words, names, etc...it is a major side effect from her meds. Sometimes it is very dramatic like forgetting her own name for an hour or more. Other times, like tonight, we all get a good laugh out of it! Tonight while trick-or-treating she saw a child dressed as Sponge Bob and she thought it was very cute. It was made out of a box and was very creative! She squealed, "Look Mommy! It's Sponge Bob Squirt Pants!" Oh how we laughed, it was great!

Thursday, October 29, 2009

My Breya Bug

My highlight of a very dreary, very frustrating day with children who want to go out and play and a mom that wants to take them out to play was a bathroom scene. That is right, a bathroom scene. This coming from a mom who does not enjoy potty humor and who is disgusted at even the thought of the bathroom that my children spend sooooooooo much time in each day! Well today, during lunch Breya used a common stall tactic in our house. "Mommy I have to go poo-poo" well it surprised me because Breya is not yet potty trained. I knew it was a stall tactic because she is the queen of not eating and Violet is the queen of needing to go potty during a meal, unfortunately she has given Breya more excuses to not eat and so today it started...or so I thought. I gladly got up and guided her to the potty. She sat on it and immediately started to pee. "YEAH BREYA!!!"" I screamed in delight. She really did have to go to the bathroom. So she looks at me and says "mommy can you get me paper" "Well love, why don't you try to go poo-poo you said you had to go poo-poo. Try to push the poo-poo out." (I know graphic sorry but I am getting to the point). So she looks at me, grunts a little trying to please her mommy. She thinks for a minute in a classic Winnie the pooh sort of way, you know with great expression and all. She then says "I can't mommy my hiney isn't workin, it's broken!" Oh that girl! I just love how she thinks!!!

A Glimpse into the heart and mind of a parent of an epileptic

In one of my current classes we needed to write using literary devices. Something I love! I am enjoying these classes and haven't been writing about anything in particular, just writing. However, a recent assignment lead me down a path that I have not taken. I have not talked much about the experience of epilepsy. I have shared facts and a bit of emotion and that is it. Epilepsy awareness month is in November and we plan on raising awareness and funds in a big, big way! In preparation I thought that I should share this with all of you.

The ER buzzes like a hive of a thousand bees. People buzz by looking for the honey, their sweet moment of exhale. When they find what they seek; a positive test result, a family member arriving to stay by the lonesome patients side. For me my honey would be an answer to prayer, a permanent fix, a cure. Regularly I sit, staring at the reflection of lights on the speckled tile floor. I imagine spot lights honing down from an alien space ship just waiting to take us away. Take us away to a new place, one without this torment. But no, they are not, they are our reality. It is a reality that grips us like the plague of centuries past. Although this plaque is not contagious and it is not bold, it grabs us secretly like a thief in the night. Too afraid to make itself known to all, it cowers and creeps exploding like a firework that nobody was expecting to explode. Why can't it be me? Why my Gracie? She is only four years old and far too young to have a connection with any fireworks. But the fireworks have found her, she has been chosen. They have made a home inside of her head. Without any warning they think that it is the fourth of July, without any warning they think it is a celebration that should occur every few days. And so she falls and shakes. It cripples her tiny body. She squirms like the crabs that we boil each summer. It steals my breath and I cry. Call 911 and call them now. My other children look to me for comfort. My smile quivers, "She is ok" I say. Her brain is just being silly and so she is dancing and sleeping all at the same time. I give her the medicine and wait. My heart beats like the drums of Africa, bold and in rhythm with the Earths clock. Finally she gasps. "Breathe baby, rest now, it is ok, mama's here!" We all pray and Thank God for being right there with us. Our house is flooded with people. The EMT's have arrived. The Fireman have arrived. The Security Forces have arrived. Oxygen, sweet oxygen, given to my baby girl, "breathe baby, rest now, it's ok, mama's here!" It happens this way each time. Each time we end up back in the bee hive. Praying that this drug will stop them, praying that our honey will be seizure free!

Monday, October 26, 2009

A camera mishap

Today we went to the OKC Haunt the Zoo. It is this fabulous event where they set up "photo ops" every so many feet. At these photo ops you get a piece of candy or a bag of chips/cookies. It is great fun! We dress up and know that our kids are getting safe and sometimes healthy halloween stuff. It is also not a scary event and we even get to peak at some of the animals at night. This year was the first year that Bren did not have to work so we all got to go together. And, we all dressed up!! That is right, Bren dressed up too. He was a clown with me and it was so great! He looked awesome! I had Lindsey take our family pic before we left and there were people at the zoo that were kind enough to take pics for us here and there. It was great! UNTIL...the last photo op of the night....

You see the zoo has people to take your pic (kind of like at the beach/amusement parks), they give you a ticket number, and then they put the pics online for us to buy later. Well we were getting our last picture taken in front of the main display that has the "haunt the zoo" banner in the background. Breya even smiled and that is a feat in itself! I asked another lady to take a pic for us and she says "it says no SD Card" YOU HAVE GOT TO BE KIDDING ME???!!!! I had left the SD card in my laptop! I wanted to share a few pics with all of you and my facebook friends and was transferring some pics...and I never put the card back in the camera. All those great shots...never saved................I am so sad! Thank God for those shots that the roaming photographers took! I will have to take more on trick or treat night I suppose, so until then go check your own camera so you aren't stuck without a battery/SD card/flash or whatever it is that you need to get your camera working!

Be Blessed!

Sunday, October 25, 2009

Christmas is coming, the goose is getting fat....

That song rings in my ears right now. My kids are loving the leaves changing, yes they are actually changing this year as oppose to blowing off the trees to turn brown and crispy instantly! I took the two big girls to the zoo on Saturday to get some good photos and I am just loving the cool weather too!


The other thing that fall brings is the incredible influx of bulk rate mail to our door step. I get about 1-3 catalogs PER DAY now and it is so daunting! However, one company in particular has captured the hearts and eyes of both myself and my kiddos. With a plastic allergy in the house we have to be pretty choosy nowadays when it comes to play things. I also like to try to be as earth friendly as I can. Finally I love to buy from families versus corporations. And so I have fallen in love with Nova natural Toys and Crafts. Their catalog came this week and the kids asked to look at it. They too love to window shop. So I gave it to them and for at least 30 minutes the four oldest sat around a circle oohing and aahing over what they saw. In the end they each had their favorite and a request for Christmas!


If you get a chance to look at the company's site you won't be disappointed, that is until you realize you can't buy everything that you want because you want it all! Their website is HERE.



Their toys are very friendly for those with special needs as well! I am looking at the modeling wax, the child's size mop, and a few other things especially for Avagrace for her muscle strength...she loves to mop, adores it actually. I am not running a child labor camp :), it is a reward for her and it uses her little muscles that her medicines seem to weaken so much! There are also wooden stacking bowels and rings that Liam can play with that won't cause him hives and anaphylaxis. Violet is in love with their doll highchair that is also safe to be around Liam, and Breya wants a kitchen...after all she plays with toy food more than any other toy! We just got her wooden and fabric toy food for her birthday! Aidan would do just about anything for the cash register and more than anything I would love to buy each and every member of our 7 Swans Family one of their beautiful wooden recorders! Recorders are a fabulous introduction to music and it is something that we would all love to do together!



Here are a few pics of the items that we just love! Enjoy and be sure to check out their store!!