Interpretive Dance with Mads

pondering...

Why is it devastating to have a child born with Down syndrome? I am not sure…today as I was watching Maddie play…this thought came into my head…and I threw around different things…like -she is not like everyone else…and then I thought who cares…because she looks a “bit” different…and then I thought not really…she is cuter and more interesting…but certainly not different…so why was I so devastated about getting the “diagnosis”…I think it was purely selfish fear of the unknown…now I question why I was depressed…why was I so sad and so judgmental…this was purely a refection of self hatred…that only I could remedy…why be devastated of a child? A child I helped conceive…a child I planned for and longed for…again purely a selfish indulgence…if having a child is only for the “perfect” accessory on my hip…I probably should not have children…they grow up, they speak…and they will disappoint my delusional view of parenthood…parenthood was hard with a “normal” child…I am always at a loss of how to teach, model and discipline…most people with or without children seem to have unrealistic opinion and remedy that does not work for us…so back to why be devastated about Maddie…I cannot answer this question clearly…and I am not sure if want to…to know how it feels to get a “diagnosis” it is a uniquely mine experience…hard to explain even harder to hear…I am over the poor me and poor others that may have a child they did not expect…Maddie is the pride and joy of my life…and I could not be more proud of how she points her finger, says hi, eats food, hugs her brother, rides a hot wheel, and dances to every song…so in the closing of Down syndrome awareness month…awareness happens in this house 365 days a year 24 hours a day…we live and breath it…and are very proud to be a member of these designer genes!

Blog Hop! Meet Maddie!

Maddie painting her spider...

Maddie finger painting...

I think she missed a spot...

so hungry...painting is hard work!

I'll get this!

misplaced...

The blame game…I try not to blame people for things…I guess that is a skill you try to learn fairly early in life…it does make life go smoother…and a sense of peace is put into place when you can forgive and forget…I blame someone that is alive and breathing for Maddie having an extra chromosome…I blame her for her heart, her esophagus, her eyes, the medication she takes daily…I blame her for saving Maddie’s life…I blame her for saving mine…she does not know that I blame her…I am not sure that is a burden anyone should carry…but my anxiety for her…is off the charts…my resentment towards her is NOT rational…but it makes me feel in some delusional way that Maddie and me will be ok…because it is not my fault…I know how Down syndrome works…I know how it happens…but this is my fairy tale mind at work…and a coping mechanism I use to get through…as I spill the beans that I have misplaced blame…I am healing…I am letting go…for her making my child this way…this way…Maddie is perfection wrapped up in a very nice package…I saw this women the other day…and I just wanted to cry…I talked really fast and in circles…I got hot and sweaty…she even asked if I was taking something for my anxiety…I said no…and said it just happens when she is around…but did not go any further…I then showed off Maddie…she commented that she was surprised how “with it” Maddie was…that Maddie did not seemed delayed at all…I smiled…I smiled because Maddie is ok…that she is a “normal” 2 year old…that I am ok…that I am a “normal” mother of a child born with Down syndrome…that my family is in tact and life is nice…

COOL RiDer

if you really wanna know.

what i want in a CHilD

Well, I'm lookin' for a dream on a mean machine (mega Hot Wheel)

With hell in HeR eyes.

I want a devil in skin tight leather, (or pink jammies!)

And she's gonna be wild as the wind. (she already is)

And one fine night, I'll be holdin' on tight...

To a coooool rider, a coooool rider.

she'll be cool enough,

Whhoa ohhhh

If it takes forever,

Then I'll wait forever.

No ordinary GIrl,

No ordinary Girl is gonna do.

I want a rider that's cool. (the coolest little chicka!)

I want a coooooool rider,

A cool, cool, cool, cool rider.

I want a coooooool rider,

 

A cool, cool, cool, cool rider.

I want a C-O-O-L R-I-D-E-R.

I need a C-O-O-L R-I-D-E-R. 

I got my COOL RIDER / Maddox Rose
lyrics from Grease 2...the movie...

again...

another black eye...fit + table = shiner

Wordless Wednesday...

icon...

there is a 20 year old girl born with Down syndrome that lives in our community...she is famous, an icon of sorts...she is the one that everyone points to when you are getting to know your child that is born with Down syndrome...she is the girl that gives you hope...she is the girl that shows you that everything is going to be ok...when we returned from having Maddie and Maddie was just a little baby...someone gave me her moms phone number to call...for support...I never did...I crumbled the paper and I choose to disengage...I choose this because I was not ready to see that everything "could" be ok...I was not ready to believe that life was not as bad as I had made it in my head...sometimes I am just not ready to face that I am wrong...so as I came out of my depression and self loathing...I went to a fundraiser for the organization that provides services for Maddie...and there she was in a little pink mini skirt, leggings, and cocky little wiggle in her walk...I giggled and smiled and thought that someday that would be my Maddie...still I was not ready to talk with her...I did not know what to say or how to act...so I just stalked her from a far and enjoyed the distance...Friday night we went to our local high school volleyball game...I was not really wanting to be there...end of the week...and tired...so I was chasing Maddie and a colleague of Chads said Kim...Mrs. Sharpe... I would like to introduce you to Mr. S. and Mrs. S and there daughter... S...there she was the famous S...the famous girl born with Down syndrome...was standing in front of me...and she was everything I thought she would be...beautiful...she has blonde hair with hot pink stripes...and she was coming to the games to watch her brother play football...her parents were so excited to meet Maddie...they had heard of her...we live in a small community so everyone knows most everyone...and they treated us like we were long lost friends...and S was more interested in her purple cell phone and her friends then meeting a cute little Maddie! it was priceless...and it made think of how selfish I have been about meeting "older" people born with Down syndrome...I have been down right rude about it...I have let my fears and my insecurities interfere...with being nice...if I do not accept all people born with Down syndrome...then how can I expect anyone to accept Maddie...it was a chance encounter...and it was just what I needed...as Maddie gets older I am so excited to watch her become the famous Maddie that changes stereo types in our community...

nothing to small...

not happy about taking so many pix!

tumbling...has been amazing for Maddie...it has been truley amazing to watch her succeed...to be one of the kiddos...nothing more...nothing less...just a kid that loves to tumble, dance, and be with others...last night Maddie walk into the studio...yeah I said walked...this is huge in our independent world...she went to her room...her door...she knows were to go and how to get there...I opened the door...and there it was Maddie reached for her carpet square...independent no prompt...she grabbed one...and found a place to sit down...carried it, laid it down and sat on it...independent...no prompt...SPECTACULAR...why is this a big deal...because some book told me this was not possible...why is this a big deal...because society expects my Maddie to be dependent...to be a burden...to be a second thought and a drain on our society...tumbling class is a BIG deal because it is a stepping stone for more things to come...because it is teaching parents and others that Maddie can do it...that Maddie is just like there 2 years old that likes to dress up and dance...Maddie is able to predict the next step in class...she is eager to participate...and she gets excited and antsy while waiting her turn to do the balance beam...throughout the week Maddie practices her dances and her tumble tricks...she will try her tummy rockers and her back bends...in the spirit of awareness I want others to understand that a diagnosis is just a diagnosis...and Maddie is more then that...

see ya...

all I got...

All I wanted was for Maddie to be “normal”…all I wanted was for Madie to fit in…all I wanted was Maddie to be the little girl I had expected…all I wanted was Maddie to have a bright future…all I wanted was for Maddie to be a clone of me but better…all I wanted was that pesky 3^rd chromosome to go away…all I wanted was the test to come back negative…today…all I got was everything I ever wanted in a little girl…all I got was a little person that taught me person first…as I watch Maddie today it makes me more anxious and more sad…why...because she is bright…because she is smart…because she is clever…because she has feelings…and her feeling can get hurt….because she knows already that she is not as fast as the next guy…does that matter…no...but it does when you are a kid or that person…as I watch Maddie learn and grow from all her experiences throughout the day…I am reminded of how far we have to get…how for her things (milestones) just take longer…sweeter when the task is accomplished…but just more difficult…she never gives up…I will not give up on her…but as her mom…I get to have these feelings of scared, hurt, apprehension…because the world is cruel…and not fair…it took me having Maddie to put person first…not everyone will be lucky enough to have a person in there life like Maddie…who teaches patience, acceptance, true love, and best of all how to actively take part in the life that you are living…and stop wishing you are something you are not…

bits of Maddie...

pretty Maddie...

oh my TEETH!

smiles...

I can play flag football to...

look at me!

Mads to the rescue!

I'm outta here!