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!

blackish...bluish...

Something I said I would never do…I would never even consider…helmets and leashes…Maddie is a walking bruise…she is so very awkward right now…she wants to run but just cannot get all the right body parts to move at the same speed with balance…and she falls head first…she thinks she can do anything and everything herself…and she is just not quite big enough yet…the other day at the park she talked her Dad into letting her swing by herself…that resulted in a open gash in the back of her head…a shaved patch of hair and super glue holding her head back together…I am not sure what her Dad was thinking but Maddie is a fast talker…Maddie is still escaping out the front door of the house…and in route to catch her…she skidded face first down the driveway…I have had to put Max’s slide bed up so she cannot climb it…yes she climbs up the slide or the latter and then manages to fall off the bed every time and hits her head…she is climbing on stools, toilets, and out of her highchair…the girl does not stop moving…even for a minute…she cries or whimpers a bit and tries the deed again…no matter if it is a gash, a bruise, a bump, or a scrap…the girl has no fear…so I am thinking the solution is a helmet with face guard and a leash with a stake…pondering!

I'll take that...

Perspective…that is what having Maddie gave me…and that really is the hardest part for me…I have had to change my thinking and the voice in my head…when you get a diagnosis like Ds, TEF/EA, heart defect, etc…you take inventory of EVERYTHING…from how you approach the world to how you buy groceries…why…cause it costs money…it costs time…nothing is as simple as it once was…the world seems bigger and eventually brighter then it did before…change is the new “normal”...and expecting the unexpected…then with every blood draw, with every doctors appointment a new worry or concern…a new challenge to google…these days I am not uptight about change or the unknown…I am just handy and good at searching for help…I am no longer afraid to ask for help or get a second opinion…perspective of what is truly important and what is not…not important things have been put on the “I do not care” list and filed away…important is more knowledge, more truth about the knowledge I learning, and a relative happy place…not important -people who take from my joy and material items…I now understand that I know nothing but I do know more then doctors when it comes to Maddie…I expect nothing from anything or anyone…and in return I will get a healthy happy life with minimal effort…I have found all my effort needs to be directed and focused on my family not others…selfish yep…but they have not walked in my shoes…and they do not want to…they seem to think my child is a “burden” a sad, poor me affair…nope she is just shear goodness…that’s why I let her lick puddles, eat sand, and look like a hot mess daily…she is my Maddie a one of kind girl-the life of the party…with no boundaries, no worries, no wants…just Maddie with a loud demeanor and infectious smile…I guess if it took Maddie to give me peace then so be it…

i dont care...

I dont care...this is a phrase that I have inserted intentionally into my thought process...it may seem callous...it may seem...like a cop out...but I am a worrier...always have been...I worry about my looks, what I am wearing...I worry if my house is clean, if my kids are behaving nice...and I seem to always worry about what others think...so insert...I dont care...I say this over and over in hopes that it will stick...that I will no longer care about what I am obsessing over...I have been a worrier for my entire life...it is me...it is part of my personality...and it is a part of my persona that I wish to be different...I no longer want to care what others think...about me, my kids, my car, my house, my life in general...but somehow I get caught up with keeping up with others...I will never forget a women saying to me...when I was contemplating what car to buy...saying we are not mini van or small car people...I thought about this and thought I am almost 40 years old...does it really matter what car I drive...does it really matter if my kids do not go to the "right" schools...that we do not live in the "perfect" house...or I no longer wear designer jeans...insert I dont care...and then there is my Maddie...this is where the I dont care...comes in handy...stares, ignorance, comments, sighs, they all make me insert...I dont care...and with Maddie's tumbling class...it has worked wonders...it is like we are the only ones in the class...I only see Maddie and her accomplishments...I see her intent on following the direction of the teacher...I see her making HUGE strides in following direction with song, dance and tumbling...and when the other women whisper...when the other women giggle at her walk..I insert I dont care...I can look at Maddie and see that it is a huge deal that Maddie sits on her carpet square, that Maddie understands each prompt the teacher gives her to finish the expected task...that this is a BIG deal in Maddie's development...I dont care that I cry when I see it happening...I dont care that no one can understand my over bubbling of pride of my daughter...and I dont care is a phrase that will become more important as me and Maddie go through this journey together...I think it will be a good coping phrase for me and Maddie to master...

it...

Does “it” bother me…I never know quite how to answer this question…”it” seems to have a connotation to “it” when asked does “it” bother me…”it” really can be anything…”it” can be that Maddie is not talking and just plain screaming for communication…”it” being that she does not seem to follow any direction or lead…unless “it” is benefiting her…typical oh yes…but still stressful…”it” can be that Maddie likes to eat dirt and smell her brother’s butt…”it” can be that her eating is VERY up and down…is “it” ok…sure “it” just depends on my mood, the day and that moment…Maddie is so unknown to me still…everyday seems to bring different emotions and wonders…I keep glimpsing at her in great awe and then a overwhelming worry comes over me that her future health is so up in the air…that she is stricturing (esophagus closing) again and I am seeing the overwhelming signs and know that surgery is upcoming…to know that this is a forever concern…does “it” bother me…yep…can I handle it -yep! do I want to handle “it”…not really…but that is my job…and I guess what I was put here to do…handle “it” and what ever comes our way…graciously and with a smile…

typical Maddie moments...

What????

I am still cute!

did I miss a spot!

there is my sweet cute face!

limits...

Limitations…not something I meant to do…but it is something I struggle with…finding out prenatally that Maddie was created with an extra chromosome…was a good and a not so great thing…in the process of dealing with the surprise…the reading and research I did…made me think things that are not true…it made me more often then not put limitations on Maddie…Yes I always try to think Maddie can move mountains…but in the back of my head I know the truth…and sometimes my truth is wrong…so then I have re-learn something…I have to try to change my opinion…this is easier said then done…example…I would tell myself Maddie would walk…but I never in my wildest dreams imagined how hard/long that task would be…example…I will continue to tell myself Maddie can self feed, chew, swallow…but I never thought I would still be helping her at age 2.5…example…communication…I really thought Maddie would be an exception to this…I truly believed she would have some words…and she does…but not meaningful words…not enough words to tell me if she is hurt, sad, sick...she can tell me she is hungry or thirsty…but I really thought with our enriched vocal environment…she would be talking before the “norm’…but I was wrong…so then I put undo limitations on her...example…Maddie cannot do without me…because how will she tell someone if she needs something…Maddie cannot be in tumbling…because she will not understand…she understood just fine…she exceeded my expectations and then some…however, last night she walked away from me for the first time…we were at the farmers market with a ton of people and she walked into the crowd never once turning back to check in…Maddie has no fear…Maddie has no idea to come back to mom…to find brother…Maddie just lives in a world that I do not get…that scares me…I call her name and she never turns back…I try to catch her and she just walks and decides to do somersaults on the cement…with no inclination that it hurts…that she should choose the grass…that she should see a familiar face…but she does not care…she just continues…I do not want to put fear in her…but in some situations she has to have it…how do you teach it…how will she know not to walk into danger…to stop and to find me…and to ask for help…will this come with age and when is it to late…have I put so many limitations on her by keeping her so protected…that I have hinder her success to being independent…

tumbles...

I am not sure how I feel…I am just in limbo again about Maddie and Ds…I understand the “what if” game is a hard game to play…I get that the coulda, woulda, shoulda, is virtually impossible to find peace in…but there are times that are difficult for me…any kind of change or disruption seems to make these feelings boil up in me…I enrolled Maddie in a tumbling class…it begins tonight…I am not sure it is the right thing to do…I know all the positives…social interaction, exercise, body awareness…but I seem to have to turn this in to a me thing…I know sad and dramatic…but it is what it is…I am not sure I am ready for the whispers…the oohhh she is so cute and funny…I get people mean nice…but this is a unknown for me a leap of extreme -put myself and Maddie out there…Maddie will be great! She will love it…I know she will because she loves other little people and she loves to dress up…but this is my insecurity…my uncontrollable insecure thoughts and judgments…when we were in Yellowstone earlier this week…it was a blast and I forgot about most judgments and negative thoughts…and then of course someone had to comment on Maddie and her walk…they made fun of her again…but this time the parent corrected the teen and smiled at us…I was ok --but a weee bit frustrated that it keeps happening…that people seem to think it necessary to comment about my girl…she is two and a novice walker…and I think of all the hard work it took to get her to this point…and it frustrates me that Maddie will hear this soon and understand this soon enough…Maddie is a sharpe cookie…she gets her surroundings…she has a high level of thought process and skill…My Maddie will get the whispers, the comments, the ignorance…and that makes me sad…if a two year is not protected from this how will she be when she is a teen or an adult…I know worries for another day…but I am scared…scared I will cry at the first cross look or sympathy smile…so the rest of the day I will think good thoughts and maybe just maybe all will be good for this insecure mama…