pretty little bow.

i was chosen.

for some odd reason i was picked specifically for maddux.

you are picked for that one child. you will be the one and only person on this earth able to care for your child the way you should.

well I am here to tell you that that is too much pressure for one person to handle. we are apparently given a certain amount of strength within us to handle the ins and outs of parenthood.

what happens when it is too much?

where do you go when you have nothing left?

im not going to throw in a bible verse here bc honestly that sometimes gets annoying. i don't need a verse today. some days i just need Him.

 i see my life and how it has gone from a 13 year old tom boy who climbed trees, to how i was molded into the mom for maddux. there is no way you can tell me that my life was not specifically designed for a life with maddux. all wrapped up in a box and with a pretty little bow.

when i had my first seizure at 13 i did not know that one day i would look at my child with the same fear i felt those days i tried to fall asleep but was awakened by a seizure saying "i wonder what the heck that was"
or how every day at lunch in high school at 12 o'clock on the dot i had a seizure in front of my friends, hoping no one saw me staring at my lunch unable to really talk and hoping i was not drooling.

i remember being asked to the homecoming dance by a boy that will remain nameless, but don't think for a minute i do not remember his name! then i remember him not taking me bc he found out i had seizures somehow.

i was there. i was not the smartest. so i can tell maddux i know.

when you find out your seizures are caused by a tumor which is cancerous and typically carries about a 10 year life span, you start to see how in line your life had to be for me to be here for her. without the seizures they would not have found the tumor early enough. without the radiation i would not be here to raise her. and without her i would not be me.

so take out my tumor and you take away the one thing in my life i am sure about.

so yes there are days that i ask if i have enough left to do this for possibly the rest of my life. im gonna say that i hope so. if my life ends up being as neatly strung together as it has so far i can not wait to tell you about it.

image by pastel photography

no rules.

~Where can you go to feel an unbelievable amount of support around you even if there is no conversations that day?

~Where can you go where when you pull in the parking lot you get a huge feeling of emotions rush over you that you start to cry like you did when you saw your child for the first time?

~Where can you go that the cheers are louder tha

n your ears can hear and high fives are like gold?

we found that place this spring. Thank you Miracle League of the Triangle for showing Maddux the true meaning of playing a sport and for bringing together her and her future husband: Davis!

beyond.

yep. sometimes it feels like this...

and then you see this.

crossroad

For some reason I find myself depressed on Mother's Day. Not that I think I am not a good mother but it makes me wonder whether I did what I could for Maddux this year. I do not leave Cade out of the equation but lets face it, I could leave him in the house for a week and he could take care of himself. So today I decided to get Cade to take a picture of how I feel. Workout clothes still on, hair a mess and in my favorite spot. Might I add he is quite the photographer! So here I am, wondering where to take Maddux next. Where can I use my money for the most good while targeting where she struggles the most. I always find a way so I do not worry too much, but I do spend a few days feeling heavy while I figure out her next path. I have listened and made all the decisions to get her where she is and God did not lead me wrong in 9 years so I trust He will pull thru again.

a box and a notebook.

what I did for 4 years is right here in these pictures. Everything Maddux knew and lost in those 4 years is here. Yes, I said 4 years. She knew it, she lost it.

We taught it again.

She lost it.

Her favorite letters~ P and X

Her favorite people on felt so I could use them on a board to help her not forget her family.

Baby Faces- Oh that book was so loved!

Good Night Moon- given to me my my sister from her girls and read so much that she could tell me the story herself. Those were the only words sometimes she would say in a day. They were complete sentences, whole phrases~ memorized.

Then there were the notebooks. The hard part. The record of seizures. The times she would stare, drool, turn bright red, not breathe, turn blue.....

And yes the number at the top right corner are the number of seizures and how many minutes they lasted that week. But on the bright side that was later in her seizure life. Earlier it was the total in a day.

She slept.

She seized.

She slept.

She seized.

No wonder she did not know anything.

The box makes me smile the notebooks make me sad.

Somber posts... yes but it is things like this that show me how much she has accomplished. Where she has been. One day I will figure out youtube and post videos of her back then. That is more real but I fear putting her out there.

Within those notebooks are what she has accomplished, also. Every word mumbled. Every sound made. If she had a fever, I wrote it down. What she ate is all in there. I could probably hand this notebook to a DAN doctor and they could find a pattern and tell me how to treat her better. But no one can tell me I was not a good mom. I do question it from time to time. I am the one who takes her to the doctor, gets her to eat food that is not her favorite. Takes her to and from therapy she does not fee like going to that day. And heaven forbid I teach her how to brush her hair. Not her favorite thing.

So for now I am not her favorite. She loves her daddy. But I am making her a wife, a mom and a person who can live like any one else one day. So for that I will take the back seat.

Our Gray

I have met my daughter for the first time, again.

Not many people can understand my writing unless you have been there or seen it in someone else's life, but M's issues interfere with us getting to know the real "her".

We feel like on a random basis we meet her... pieces of her.
Never a full picture. Just pieces.
Her pieces are cute.
Her pieces are funny.
Her pieces are so heart felt and loving in her own way.

I nickname her Amelia Bedelia. She is very black and white. No abstract.
No jokes.
No funny sayings.
No "implied" humor
Just flat out black or white.

Well now after 12 weeks of Brain Balance and 7 years of intense therapy... I am meeting her gray.
It is witty.
It is funny.
It is sometimes scary and not filtered

But it is her Gray

It may not be in a rainbow, but we think it should be!

because we were there...

I have many reasons for creating this post. One in celebration for M

for reaching the "no appointment needed" stage in her recovery from epilepsy, but also to help a friend who is fighting the same thing we did so long ago. Most of my NOW friends really have no clue how our lives were back 8 years ago with her. There are no words to describe it really so I will not try. I only have images and home videos to see and remind me of many

things God has uniquely made me forget.

I feel we all have our own battles that God equipped us to handle. We were chosen by Him to care for these kids knowing what we could handle. Even if we think we can not.

What are the odds that I chose to go to school to be a teacher and a second major in Deaf education only to find out I would use my sign language later to communicate with my daughter. Who knew that I would be given seizures as a teen to only have a daughter later who also had seizures, was treated with the same medication and I would know what it felt like to have them. To know the tests and know the ropes of the neuro world. Who knew I would be given Celiac Disease only to use the same diet on my Autistic child.

Who knew to move us to a state on the other side of the world 2 months before her birth where the best sensory integration center was 10 minutes from my home...

God knew.

He also knows where we will end up.

Here she is... in the middle of her own world. Fighting seizures, fighting her own life

and here she is now.

a bright, funny girl. Who is NOT mentally retarded. Who DID learn to use the bathroom, who IS a joke teller ( to some extent) and who IS learning beyond 4 years old. Autism is not a cement box. It is a ball of clay that can be changed, molded and shaped beyond the age of 7 into a beautiful piece of art. One that God helped us to know how to create. In His time, in His way. It is not easy. It is not fun.... until you see it shaping itself. Until you hear the laugh at the joke. Until you see her introduce herself to a new friend. It will continue to create and mold but as long as it is continuing we are happy.

We are happy.

Hugs!

this is where we are goin'

Brain Balance here we come! We have gone 2 days and she loves it! Now if we can catch that right brain up with the left brain and then teach them how to communicate with each other she will be set! That it!

If you are not familiar with right brain left brain and how they work together get the book Disconnected Kid by Robert Melillo. I am getting ready to read it myself and it is the first time I feel like... "oh, that makes sense!"

Now in the world of non-typical kids you will hear all the time... there is not enough studies to prove this works, there is not enough research that can prove this means this, there is not enough placebo based studies to show........ well until you can tell me what causes Autism and how it can be treated even after your 9,000,000 studies let me do whatever I feel I need to do to get Maddux where I think she can be!

Progress notes to come as she works thru this 12weeks process.

where will we be going?

Her she is... a wheat free third grader who can now look at the camera and smile with a purpose. How do you "teach" a person to smile? I never did other than to say, "Show me your teeth" and the outcome of that is not very pretty. She now looks at me, turns her head to the side just a little and looks into the camera with a purpose of "I am going to make this one a cute one" I had some time with her in Feb. to shoot with my heart and this is what I got. It comes from a place only parents who have kids with special needs can understand. How you wish you could take out of her what was "wrong" and fix it. But then who would Maddux be? When I take pictures of families I try my best to pull their love for their kids out of their hearts and plaster it all over my camera lens. Sometimes it happens, sometimes it does not. But when it does it can make the heart of anyone sing. It is a moment, it is a feeling, it is a second in time when your heart melts and you take your love and show it to everyone. It is a picture that can make a perfect stranger cry. You do not have to know someone to feel touched by their feelings of love for each other. That is what makes love so beautiful.

Take a moment. Step out of your world of lunches, work, papers and dirty faces to clean and get to the root of why you live. It is your kids. It is your family. One moment can change it so embrace what you have now and make your heart sing.

Next time.... we will be balancing brain hemispheres!!!! Stay tuned!!!!

our new journey.

Well my friends it has been a while. A while of playing, a while of praying and a while of discovering. While I do own my own business I tend to loose site of our past with Maddux. All I do is pop in a video of her about 3 years ago and it all comes rushing back to me. Things about how I need to stop doing what I am doing for others and do it for us. Capture MY memories. So I did.

I did a whole series of M and C on the bed playing. Laughing. Tickling. Just being. Since my last post M has started 2nd grade and is thriving. We tackle the word problems from the Devil's home and continue. I even have issues with them. Hence why M does not stand

a chance! I have also started all of us on a gluten free diet.

I was diagnosed with Celiac Disease about a month and a half ago. So I started them on it. M bc I really wanted to see what this diet would do for her. And C, well bc it is too hard to have one on it and not the other. They are FINE! They only miss chocolate donuts but nothing a bowl of trix cant handle.

C's poop is back to normal from having constipation and M has a sense of humor like I have never seen before. She still lacks the ability to catch our sarcasm but she throws some things out that I never knew she knew. It is working. Do not mix this with GFCF. We are not on CF but gluten free is hard enough. I just wanted to catch you all up on her and I promise to be more diligent at posts. It is hard with a family, a business and 2 blogs but I will try!

Until next time!~

HUGS!