Monday, August 31, 2009
Turn it around Tuesday
Sunday, August 30, 2009
I could be anyone I wanted.
Friday, August 28, 2009
Tuesday, August 25, 2009
I was diagnosed with NF1 when I was about two. Before Kindergarten, I was in Special Ed for a year (I think) before going into mainstream school with extra help, speech therapy classes (which I was stubborn in). I had many, many MRIs in my life, probably a few a year, which has now waned down to one every other year or so. I'm lucky to be this healthy. I'm lucky to have the problems I have with coping. My problems are more psychological and how I look, how I talk, and how social I am. And yet still I struggle. I still feel like a freak.
It's something I never talk about to normal people. A co-worker asked me about it after seeing it on my Facebook page, and I brushed it off, somewhat embarrassed, like a kid with its hand caught in a cookie jar. I don't talk about it to people I don't trust, which is nearly everyone. No one knows about it anyway. To them, I'm just a bit “off.” I'm okay with that. I tell people altered versions of the truth. “I just have bad hands.” I say, instead of “My NF affects my fine motor skills and become clumsy, so it's very hard for me to write, pipe, and crimp neatly.” (I have a Baking and Pastry Degree, so decorating skills are important, and I lack them severely) It's too much to explain and understand. It's best that they don't know. I'm used to the teasing and comments. But Facebook, believe it or not, has made me open up more about my NF than anything else. I've found so many friends, who make me feel so accepted and normal with how I feel and what I go through. It's so comforting to know there are people out there with things you can relate to with MRIs, nerve pain, itchiness and tumors. There's always someone to talk to.
I'm not sure how I feel about NF. I think about it every day. Wondering when it will get me. If my thoughts about only living to 25 will be true. If I do make it past that age, what will my life be? It's going to get me someday. Good health doesn't last forever. You'd think that thoughts like this would challenge me to do all sorts of things: skydive, travel to a distant country and eat bugs, swim in Hawaii, climb mountains, eat cheese in France. But I don't. Not yet. Doing so would seal the deal of my death date. So I'm here. Working twice as hard as everyone else just to prove that I'm normal. A “high functioning freak”. My prognosis when I was two years old was I wouldn't make it past the mental/functioning age of 6. So for me, to have a job, college degrees, a car paid for with my own money, and a guy I'm practically engaged to is sort of a big deal for me. Small wins. Stuff you Normals take for normal is a small win for me.
But I try to make something out of my life. I see the positive stuff that is in NF. How hard I try at my job. Being compassionate and friendly to people who are different. Possessing deep empathy. Trying hard to be my own person and make the best out of my situations. And of course, I love my spots. I have the affection for them like one with a tattoo would. The blotches of cafe au lait on my skin. They stick out, like some sort of Freak Alarm. If I didn't have my spots, if one day they were to be gone, and I'd have normal skin, I would feel at a loss. NF is a part of who I am, and while it may kill me someday, I have no idea
what I would do without it."
Whatever Whacky Wednesday!
Monday, August 24, 2009
Turn it around Tuesday
Sunday, August 23, 2009
One evening, I forgot to lock the door. (big mistake) Bailey, my oldest, slipped quietly in the door and kneeled by the tub. “Want me to wash your back, Mommy?” she asked in a whisper, perhaps sensing my need for quiet. I looked at her, and couldn’t resist the genuine plea to participate in my bath time ritual. She took the bar of soap between her fumbling hands until lather billowed from her fingers, and then gently rubbed it across my back. I hummed an “mmmmm” of appreciation, and she asked “Do you like for me to wash your back, Mommy?” I did very much.
A few moments later, Riley, my middle child, discovered she was being left out of something that looked wonderfully fun -- water and bubbles. She too knelt by the tub, keeping her normally spirited voice to a soft lull. “I want to play too!” she said. Scooping up a handful of bubbles, she dabbed some on her nose and giggled. Though I should have felt my moment of solitude had been invaded, I giggled too. It became a game. She blotted my cheeks with bubbles. “I love your cheeks,” she smiled. And then my chin. “I love your chin.” And my knees, and my elbows, and my ooshey gooshey tummy. She loved every decorated part of me. No one in THIS room cared about my lumps and bumps. I was their mommy....their hero....their playmate in the moment!
My other daughters soon followed, delighting in the white wonderland of bubbles and soap. Even the boys peeked in, to see what was causing all the comotion. Some of the sweetness of the moment gave way to rambunctious play as water splashed, and bubbles popped, and giggles floated.
Hearing the chaos of laughter, my husband knew they must be up to no good. But instead, he found them lined like a row of ducklings by their mommy, soaking the floor and themselves, donning beards and hats of bubbles. And, to his surprise, he found a smile on my face. So, as any good father should, he smiled back at me, came over to the tub, scooped up a handful of bubbles and blew me the sweetest bubble kiss ever.
These days, my bath time ritual has changed. Though sometimes I miss soaking in the peace, and widening my horizons with books without pictures, there will be plenty of time for that. There will come a time when the simplicity of water, bubbles, and mommy will no longer delight my children to such giddiness. There will come a time when my babies are too embarrassed to tell me they love my nose, and they love my ears. And there will come a time when they will all be too busy to volunteer a back rub or to gently wrap me in my towel so that I don’t get “freezing,” as Bailey would say.
I listen to my kids say their prayers before bed, and cannot help but smile when they thank God for mommy letting them give her a bath, and tell God they hope I take a bath tomorrow night.
And when I finally go to bed, I say my own prayers, I too, thank God for bath time....
Happy Monday !
Thursday, August 20, 2009
"Mommy, why are there bees?" Having a conversation with a 4 yr old can be a fascinating thing. "They are mean and they sting me."
"We have bees, because they pollinate the flowers. They give us honey. And they feed the spiders."
"WOW! Well, then why are there spiders? They are creepy and crawly and scary."
I can see where this is going, and the story of 'There was an old lady who swallowed a fly', came to my mind. I smiled and took the lead on this one.
"We have spiders to feed the birds, sweetheart." My sons eyes filled with amazement, "Wow, mom you're the smartest girl I know!" I then asked HIM, why he thinks we have birds.
His response melted my heart. "'Cuz, they are so pretty, and there are so many kinds, they fly and make the world so great. Just like people do." "Well why do people make the world so great, honey?" I ask. "Cuz God made em." he says.
So simple, a child's mind, yet so profound. What is it about the way a child sees things, that makes everything so wonderful? Why do they always see the good and amazing? My son didn't KNOW the bees were "bad", until he got stung. He didn't know spiders were "scary", until he saw his mommyshriek, as one crawled across the floor.
Just like in the story of Adam and Eve. It was only AFTER they sinned, that they became shameful, hiding from God. It was THEN that right and wrong...good and evil became something to worry about.
As we grow up, our mind is molded by what other people say or think. I knew nothing about NF, until I heard my mother curse it. I was taught to fear it, hate it, dread it. I was taught, that I should cover myself up and feel ashamed.
It was only after my official diagnoses, that I had to reach deep down, and pulled out a strength that exists in everyone. I saw how angry and tormented my mother was, and vowed to never ever let myself become like her.
Switching the thoughts in my mind wasn't easy...In fact I have to work at it every single day. But just as my son now looks at bees and spiders in a different way, I look my Nf in a different way too. Instead of something scary, or creepy, I see beyond and focus on the beauty of the creation itself.
I too, have a purpose in life. And so do you. Don't be ashamed of who you are....or afraid of what could happen. Choose to reach down into that place, where the child lives, and pull it out. And see the amazing creation that you are.
Wednesday, August 19, 2009
A Whatever Wednesday
Although outward beauty may be seen
all painted on with a brush so fair
its shallowness can be revealed
in our actions unaware,
But inner beauty is much more rare
and it comes from God above
It is shown in how we act
and how we show His love.
Like an oyster in the ocean
its outer shell so plain and dull
but when you look inside of it
theres a pearl so beautiful.
I hope to be like the oyster
when you look inside you'll see
a heart so warm and beautiful
and see God's love inside of me.
Monday, August 17, 2009
Turn it around Tuesday
"When he got into the water, it was like....You know that experiment with water, pepper and soap? People scattered and moved away from him."
Sunday, August 16, 2009
LOOK AND SEE!
Friday, August 14, 2009
Thursday, August 13, 2009
Wednesday, August 12, 2009
What about ME Wednesday!
I remember making cookies with my mom. Our family was always busy, but every once in a while, she'd sneak me into the kitchen and surprise me by having me help with chocolate chip cookies!
I cherished those happy times with my mom...and remember how happy she was. We'd talk as we created the warm and gooey treats that we all loved! My brothers would run into the house, and devour several cookies, then run back outside. Mom and I would laugh.
I love creating these kind of memories with my own children. It makes so happy when one of my kids comes up to me to tell me I am their favorite mommy. "I sure hope so!" I say. I can see that I am filling them up with so many good memories.
Yesterday, we made chocolate chip cookies. It's always fun to let everything else go, take a break and get messy with the kids. We got all the ingredients out, and made a assembly line. Each kid had a job, and they were all set to do it well.
They all pushed the stools up to the counter, just waiting for their turn to crack an egg, measure the sugar, or use the mixer. We made a double batch, to make up for all the cookie dough they were sure to consume. :)
After we finished mixing, I gave each of the kids a beater or a spoon and sent them outside. I bake a few cookies and set the rest of the dough in the fridge. (There was a lot of dough, and didn't have time to make it ALL)
As I was cleaning up the mess...I thought back to when I was a kid, making cookies with my mom. I smiled. Even though there weren't many memories like that for me...I'm glad I have any at all.
During all the times of sadness....My mother would stop, and the light would shine, even if it was for just a little while...I am determined to not let the stress of everything, stand in the way of my childrens happiness.
I had left the kitchen, to switch the laundry, came back in to find the fridge door opened and standing on a stool was Riker, my 4 yr old, with his entire hand, stuck in the cookie dough....he pulled out his hand and laughed as he ran away.
Funny kid. I sure hope he doesn't get a belly ache!!
Monday, August 10, 2009
Turn it around Tuesday
Thursday, August 6, 2009
Freaky Friday (anything goes)
I feel like I am one of the worlds luckiest people......My choice to have a large family was the best decision I could have ever made.
My kids fill me up with so much joy and happiness, that without it, I'd be a lost soul.
I had one woman question my choices in bringing children into the world, given the chances of passing on NF. My answer was simply this...."If I lived my life on the 'what could be'...or the 'what if....' I wouldn't truly be living. I may as well just crawl into a hole and bury myself. Living, scared of what COULD happen...isn't living to me."
And...I'm here...I have NF....and I love my life, despite the NF. I know medical problems can arise from from NF....But each and every child is a blessing, and we will take the problems as they come.
To Rachel, My sweet little daisy....I love you more than life itself. I promise to be with you every step of the way.
You are so important to me....and I know this disease is going to become something you hate to deal with....but for now.....I love that you have such a great way of making the best of things.
You always make me smile.
I know the times at the Drs gets kind of scary....but I will be there, holding your hand, for as long as you need me to.
To Braden.....You are a fighter. You always make me laugh! Your sweet nature and fighing spirit can get you through anything!!
I promise to look out for you....To not let anyone take advantage of you or treat you badly.
I promise to stop everything and play video games with you.
Thank you for being so kind....Thank you for blessing my life!
Wednesday, August 5, 2009
Tuesday, August 4, 2009
I have been in a wacky funk lately, sort of obsessing over this NF. My fingers exhausted, from typing in my childrens symptoms....I worry about them. I think about the tumors in their heads, wondering when things will get worse.
I do push that worry aside....for them, but hide within myself with this weight, pulling my heart down.
Rachels brain tumor, is on the left side of the basal gangelia.....motor function and speech can and have been affected by this tumor. All we were told to do....is "watch and wait".....I hate when I am told that...It's like the Drs don't even want to try.
Rachel is doing okay.....My THRIVING little sweetheart is such an inspiration. She is my silly little girl. She loves to be tickled. She loves Mustard and Jelly sandwiches. She is head strong. She is tiny, but strong. She loves DORA. She believes she is a Princess. She melts my heart with her hugs. She snuggles and loves to be held like a baby.
Braden has several tumors at the base of his brain. These tumors cause him major headaches. Braden has been behind his whole life. He is just begining to realize that he is "different"....Kids his own age don't understand....he has been made fun of and treated badly by some of his teachers. He needs a voice --so badly...This school year we have made some significant changes. He has a voice now...he will THRIVE.
Braden hasn't had a headache is a few wks. He takes medicine everyday, to help control this. He is such a sweet boy. MY video gamer. My BIG BOY who still loves to hug his mommy. He loves bugs and isn't afraid to squish a spider for me. He loves the discovery channel and will watch it all day. He has the most blue eyes, I haev ever seen. He loves EVERYTHING spicey.
So why all of this on a WACKY WEDNESDAY? Because I wanted everyone to know, that despite all the medical issues.....we choose to PLAY.....Be silly.....I will spend my life showing these 6 kids of mine.....that life doesn't have to be all about stress and problems......You can look at the WACKY SIDE of things and have fun.
Monday, August 3, 2009
Turn it around Tuesday
Sunday, August 2, 2009
I heard a really good sermon today. It was entitled, "Man does not live by bread alone". I didn't hear anything new today, but I heard it in a new way.
The sermon talked about how we as humans require validation....someone to tell us we are worth something....And how people, in general look for that validation in everything but God. I know I do this all the time. I search and search for people to make me feel okay with life.....It rarely works, and usually backfires. I end up longing for more, and feeling worse than before.
We all have a "hunger"....for validation. Some try to fill that hunger using relationships, food, work, sexuality, adventure.....so desperate to fill that need...only to fall short, longing for more. Unmet desires can be very frustrating. God knows every single desire of my heart...if I started with Him, the path would have been easier.
I have prayed and prayed .... trying to show God my desires. I want this NF to go away. I get so mad at it sometimes, that I have often wondered if it was a curse. "How can I possibly live and learn anything from such a horrible disease?" A lot of this anger stems from watching my own mom, blame God for damning us.
But as I grew and learned more about God, I began to turn away and plug my ears, whenever my mother would go on one of her rants about this disease. I refused to listen to it...and would often tell her to shut up. I saw how empty my mother was, and how trying to fill her hunger, was not my job.
Even today, my mother holds so much guilt and anger over this and will probably never let it go. I had a conversation with her on Saturday, we talked about what's happening in my life, and with the kids. I felt hesitant to bring up the issues my NF kids have been facing, but briefly touched on it. Her tone switched and she lets out a heavy sigh -- She swore blamed God again. What she doesn't realize....is that this family is THRIVING WITH NF. But trying to let her that, only frustrates her more SHE has to make the choice to let God in, to heal her wounded heart. The path is her own. Even as hurt as my mother is, God loves her. God knows exactly what she needs......she just needs to let go.
I am being directed and guided down the path I am suposed to be on. I am a woman, who has NF, but if I let that be ALL I am...I am not living up to God's desires for ME. I need to go to Him for my validation.....to make me okay with life. I sure wish I learned this earlier in my life.....but what's so awesome...is that it's NEVER too late!
Saturday, August 1, 2009
Life is strange with its twists and turns,
Don't you give up though the pace seems slow,
Success is failure turned inside out,