so to everyone who changed me and her and to the people who build me and/or her up in some way through our walk....thank you and you are forever imprinted within me.
imprinted.
I have been sitting on this post for a while. trying to know the best way to showcase her. the right words. the best picture. the right angle. how she should look. but while i have been sitting and thinking and shooting over and over for a month, i realized i really don't need words. this tattoo states it all. it's just a quote. one beautiful sentence. but one that sums up my being for her. my purpose. and apparently what God felt i could do and do well. i have always called her my angel baby. even before anything happened. never really realizing how she would change me and a million others who walked through our lives. so in true maddux fashion she refused to take pictures with me. I tried and tried but she refused. but that is her. so instead she took the pictures of me. and in some ways i feel like that is even more special. i got to grab an almost face of her. but all others are photo credited to her ability.
so to everyone who changed me and her and to the people who build me and/or her up in some way through our walk....thank you and you are forever imprinted within me.
so to everyone who changed me and her and to the people who build me and/or her up in some way through our walk....thank you and you are forever imprinted within me.
pride
there is love
there is fight
there are goals
there is war
there are struggles
there is complete and utter determination
and in all of that there is maddux.
for one child who has no clue of what she has accomplished in her 12 years here, she walks through life with nothing but pride in herself. and not pride from the fact that she did x, y and z. but a pride of another kind.
pride that she can blend but is okay when she doesn't
pride that she loves things that spin and thinks others are weird when they do not
pride in her 12 imaginary friends bc they know things others can not help her with
pride in being who she is and not questioning why she is
pride in hatred for socks
pride in fact that she wears nothing other than flat Toms or straight up stilettos
pride in her ability to talk to an animal better than a person bc there is not expressive language she has to deal with bc all they can do is listen
pride that she can blend but is okay when she doesn't
pride that she loves things that spin and thinks others are weird when they do not
pride in her 12 imaginary friends bc they know things others can not help her with
pride in being who she is and not questioning why she is
pride in hatred for socks
pride in fact that she wears nothing other than flat Toms or straight up stilettos
pride in her ability to talk to an animal better than a person bc there is not expressive language she has to deal with bc all they can do is listen
this is something i need to learn to do myself as her mom. so on mother's day i learn from her.
i follow her lead
i trust her like she has trusted me for the last 12 years
maddux and i did this ourselves and today we both choose pride
rest easy my maddux...smiles await you when you rise
rest easy my maddux...smiles await you when you rise
normalcy
Normalcy: /n/ the condition of being normal; the state of being usual, typical or expected
in the world of autism there can be no more important word than that. it is where the root of this word is born that you take that definition and create its meaning.
8:00 she texts all her people good night
8:30 she goes to bed, gets on her jammies, washes her face, i tuck her in.
8:45 she gets up and gets her water
8:50 she talks to her imaginary friends about her day til she feels comfortable enough to go to sleep
her baby doll on her cheek her small dog tyler in her hand
7:00 she wakes up. not a minute before or a minute later
7:03 hugs charlie as he runs for dear life from her
7:20 she gets ready for school and never tucks in a shirt, buttons every button the shirt has on it, pulls her pants up so they no longer fit her and she now looks like she has pants a size too short
7:40 she leaves for school, still in her booster seat at almost 12 bc she likes how it feels
attends school and does way more than any child at that school bc it takes her 20 minutes longer to do each thing asked of her
3:00 she get in my car after stimming while watching the tires of other cars go by and can probably name every tire known to man and which make and model the tire belongs. she grabs charlie. and smiles
3:10 she has a snack with charlie
3:20 plays on her ipad until its time to learn more stuff from me that will help teach her how to be a mom when she older. although she has informed me that she will not be a mom bc she wants to just take care of Davis and its too hard to do both.
5:00 teach her to hold a knife and cut with purpose
5:05 fight her on a new food that she says "feels weird" and she doesnt like the smell
5:30 show her how to get the shower ready and help a child who hates bubbles how to properly clean her body and her hair. IMPOSSIBLE!
6:00 homework bc apparently the teachers felt her previous 6 hours at school weren't enough. Mama can not do improper fractions so google is my BFF. even then i still have no clue. true story.
wash. rinse. repeat.
This is us. this is our normal. is it yours? nope.
in my house i have 2 normals. one that follows a more popular route. then i have hers. its a crazy mix of "do it yourself" and "let me help you". is one better than the other? not in my book. but i will tell you the one that is less popular changed the way i created his normal.
adjust. adapt. change. go be your normal. you learn things there.
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
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!
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!
Subscribe to:
Posts (Atom)
