flour oops!

crazy hair...

ooohhh Abba...

Mama Mia…Grease 2…Grease…Chicago…I cannot tell you how much I LOVE musicals…in my head I am always singing…dancing…for a few years…the music stopped…I no longer wanted to dance…I was pregnant with Maddie just got the diagnosis Chad and Max were hunting…and I was crying watching Mama Mia on the couch with the ridiculous thought that my Maddie would not LOVE musicals…like her mama…I have waited my whole life to share this with my daughter…my Mom took me to see Pippi Longstocking off Broadway in the Twin Cities when I was a kid…and I was in awe of it the whole show…I remember never sitting so still in my whole life…I remember feeling the excitement and wanting to someday be on stage…and then I sang…it was not pretty…it was not good…my brother could not stand it…and my career was over…last night I went to Mama Mia off Broadway and it was wonderful and again I thought that in my next life that is what I will be doing…singing,  dancing, smiling…traveling…but in this life I will enjoy my love with Maddie…I cannot wait to take her for the first time to a Musical maybe in New York…with a pretty dress and her hair all did…I cannot wait to see her face and feel her energy with every song that is sung…I cannot wait to hear her squeal and squeeze my arm with every great act and dance…I know she is going to love musicals…I know she is going to love getting dressed up and having a Mom and daughter night…there is so much to look forward to…so much to experience and enjoy…Maddie is getting bigger and bigger and I see her growing so much and with that comes more experiences…more silly things I never thought we would do….or I would experience being a Mom…Maddie is full of herself these days and I am so thankful to have front row seats and no longer being in the balcony…

silly me...

21 things I thought were lost when I found out Maddie was going to be born with extra loves…

1.                  loving a baby doll and mothering her dollies

2.                  eating a dinosaur chicken nugget

3.                  potty training shenanigans

4.                  dancing and feeling the rhythm

5.                  watching her frolic in the mud with a pretty dress and no shoes

6.                  catching her stealing from the cookie jar

7.                  temper tantrums

8.                   a LOUD screeching voice

9.                  manipulative communication to get what she wants…when she wants

10.              imaginative play dress up, barbies, cars

11.              mimicking my every gesture with her hands, nuances in my speech to pacing on the phone

12.              loving flowers and the sun

13.              dare devilish antics – no fear

14.              wanting to learn and go to school

15.              remembering the little things…tumbling and showing her feet after a front roll

16.              grabbing me with all her mite to hug tight

17.              adoring her brother…always

18.              looking up at her Dad and just squealing with excitement every time she sees him

19.              pretending to be a puppy

20.              typical not listening and pushing boundaries

21.              Happy but opinionated…Alive and healthy

judgement...

Sometimes I feel like I am out on an island…not a sunny white sanded island…a island where it is full of trees all looking the same and nowhere to go or get out…on this 3 year journey of being Maddie’s mom the same things happen over and over again…and then I just get tired and annoyed with them…examples and what set this tirade to its tipping point…people writing the “r” word on facebook; standing in line at Bountiful Basket and hearing the volunteer use the term mentally disable and of course the upcoming IEP…since I have moved on from the initial shock of having extra chromosome loves…I have moved to the shock of ignorant people…when I hear or read someone use the “r” word….or a person who works with people with extra needs- say and use the phrase mentally disable…I do not like that phrase…it just makes me cringe…it makes me think… is that how someone would describe my Maddie…insert “r” word, “mr” word…or mentally disable…I would describe Maddie as mentally able and sufficient to contribute to society…or better yet not even refer to her brains but who she is a person…and then there is the fast approaching IEP meeting…that is a waste of my nerves….today Maddie was tested and sure enough the therapist concluded what I already know…Maddie is turning 36 months old and is at approximately a 18 to 24 months developmentally …yeah I know…I know…I am not so wrapped up into Maddie that I do not see her true milestones, skills and tasks in her tool belt…I told her therapist that I am officially not attending the IEP…not doing it…I am not sitting at a table and listening to something I can read for myself…alone…with wine, tissue, and on my own controlled terms…I know at this meeting they will tell me what they will provide and we will set goals…I know what they will provide it will be on the document that I have to sign to get services…this is a long process and I feel like I did in the beginning…no control…community child….with no end in sight…I know what to do when she is not getting what she needs…I speak up…not difficult…and if they do not take care of it…I will…Chad, Max and I will pick it up and teach…we will carry her and we will push her…we will hold her…it is our job to…and goals…Maddie’s goals are what she succeeds to master in this year…I am not sure were my anger, frustration, uneasiness are coming from…for goodness sakes it is pre school…with a side of therapy…two times a week…not her going away for a day or even a night…just 2 hours 2 times a week…but this feels big…this feels scary…and the sad thing is Maddie does not even know what is coming…we talk about it…but she does not know Mommy will not stay…so now I put Maddie into this world…where people refer to her as the “r” word or the mentally disable…I will hear things like it is my “calling” to work with people like Maddie…I hate that…I feel it is condescending to tell a anyone that it was there calling to work with my child…really do not do us any favors…because you get far more from just being in the presence of my Maddie then she will ever get from you…I know I will get used to Maddie being independent from me…and I know that she will love it…and I know she needs it…but this truly is easier said then done…I want to ride both sides of this fence…I want to receive therapy and assistance with Maddie…but I do not want a community child…I want help to raise her -on my terms…not on a standardized tests and money terms…I want Maddie to receive all the extra OT, PT, SP, reading one on one or in a group…but I want her included in a regular classroom and not segregated out….and I want her to play sports, participate in plays and walk in the graduation line because she earns it…not because she was born with extra and it looks good for them as a school….I want Maddie to live life to her fullest potential…I want her to be described as Maddox, Maddie or Mads…the nicest chica I know…exhale…

hippie...

Blonde curly hair and blue eyes…that is Max…he is choosing to wear his hair long these days and his hair is what I would call ultra cool…he also likes it…at the young age of 6 he is learning about standing out and being different enough to get noticed…he likes it…he likes the reaction he gets from people…and it is not always positive and kind…especially when it comes from older people set in there traditional ways…of boys have short hair and like the color blue…we raised Max to be an independent thinker…a child with strong will and an opinion…not always easy and I have questioned myself many times with this way of parenting…but as he has gotten older and is becoming comfortable in his own self…he is going to be just fine…today he went to school with his long blonde locks and toe shoes…I have to say he is what I dreamed of for a son…but my dream a few years ago were very different for him…I wanted him to be nice, popular, and athletic…and he is not that person…he is nice but not to nice I would describe him as cautious…he is not popular…he is just normal and not really wanting for more…he is happy by himself as in a crowd…he could be athletic but he has chosen to be academic and more of a rock climber type…a free thinker…he would much rather hike a mountain then play football…he would much rather learn something from the discovery channel then watch cartoons…if you ask him what his favorite show is it would be Dual Survivor, Infested, and Monster Bug Wars…he is a perfect brother for Maddie…at the park the other day when Maddie was having her surgery…a 10 or 11 year old girl called her brother the “r” word…we have talked to Max about this word…and he believes you should go to jail for saying it …he stood there…stared at her…Chad said he was frozen and spirit broken…and the brother of the girl said watch you language…Chad chimed in and said my daughter and his sister was born with Down syndrome….and that is not ok to say…she dropped her head and her color faded from her face and she apologized to Max…teachable moment for Max…and the other children…Max is called names for his long hair…referencing him to be a girl…he does not care much…but when it comes to his sister he does…it takes small instances to change people…I think that Max will have just as hard of a time in school with peer pressure and ignorance as Maddie will…Max is different then the rest…he is a lot like his dad…difficult at times and always wondering why and how come…Max will get lost in his own thoughts pondering the universe…Max will be out casted probably more then Maddie…why -because he chooses to have long hair and be a boy in Wyoming…because going to his Grandpa chicken farm or a museum is cooler then going to the  a water park…Max is a difficult child…but he is perfect to be Maddie’s big brother…he will know when to step in and protect her….and when to sit back and watch her learn for herself…Max is sensitive when it comes to Maddie…these surgeries and hospital stays have been stressful for him…he is the forgotten child…when people call they ask about Maddie and how is she doing…never thinking about the little free spirit that wants to fix it…I hope that in the coming years Chad and I give Max the tools to prepare him for life being Maddie’s big brother…it is so much responsibly that he did not ask for…but like when she was born…he will love her no matter what…

that mom...

Maddie had her surgery...it went well...she will be dilated again in 3 short weeks...so that really was not the interesting part of day...thankfully...we got there and I purposefully eat in the car while Maddie sleeps...when she wakes up all food and drink are hidden...I just don't think it is nice to eat and drink when she cant...and it saves a lot of tears when I have to say no...so we arrive at the surgical center and Maddie makes her grand entrance...greets everyone...we check in and it is nice that I have gotten to know the staff, nurses and even some of the other doctors...because Maddie is so stink'n likable and cute she really has a fan club...which does not help with her little look at me attitude...as Maddie listens to her ipad of music she dances and sings and is happy to oblige in small talk and smiles...Maddie was a rockstar helping put herself to sleep by holding the air mask...as she drifted away I felt ok with letting the doctor and nurses have her...I trust them -now...I like that feeling and it helps that they put on Maddie's favorite music and favorite smelling stuff to help her go to sleep...they just make it a positive experience...and that helps...more then ever! so I leave Maddie and go back to the waiting room...I have the ipad and I am ready to read and just quietly sit in peace...enter the scene...a young mother is sitting with her toddler...the child asks for a drink...she gives her some water in a sippy cup...she lets her drink -alot...the little girl wants more...and begins screaming for more...the mother sits and texts...not making eye contact with anyone in the room...at this time her child is screaming at the top of her lungs and throwing herself on the ground...never did she look up to do a I am sorry smile...she just texted...she never once responded or talked to her daughter...not consoling her -nothing...so the nurse comes out and now it is clear the little girl is the one having the surgery...and why she could not drink...so as they leave the room the mother tells the nurse that the little girl is "pissed off" at her...that she took away her sippy cup...of course the nurse says why did she have a sippy cup...did she drink...the mom lied and said a little...I am not sure why the mother did not just hide the sippy cup in the first place...never allowing the child to have it...now the child will throw up and be sick after anesthesia...but not sure this mother gets it...I really try not to judge...I think having Maddie has shown me that everyone judges and for the most part the judgment is misinformed and wrong...the thing here is that the mother set her child up for this...she gave in to the first drink...and in consequence there was a fit...and in further consequence a delay in the little girls surgery and now she has to go threw this again...the funny part was when she left the room the whole room began talking to her...before her we were strangers...after her we were buddies...everyone had an opinion...everyone had a solution...I was just thankful it was not me...mind you it has been me...but I am the parent profusely saying sorry...and giving courteous smiles...and promising my kid a kitchen sink and a new dog if they stop...but what scares me is the lack of response from the mother...that just texted...is that her coping mechanism...how did she get so lucky not to care what others think...how did she get the gene of screw you all I know what is best...all I could think is I bet she has the kid that goes to sleep at night by herself with out having to be rocked...and she is the mother that can just have a day off from mothering and not feeling guilty...sometimes I wish I could turn off my guilt...but then again I think I would be lost with out it...it is a good morality check...

share please...

Share…not something I am fond of…at all…sure I share my feelings, my opinions, my mood…but I do not share my food well, my things, or my family….I am not what you would call a good sharer…or a person that is willing to give and give…I only give my all to people I like…if I like you…I will give you my second favorite shirt…if I love you I will give you my everything…I will give you my time…but sharing is not something that comes easy to me…I will blame it on being the baby of the family…and making my brother share but not really me having to reciprocate…today it was phrased to me that it is exciting that Maddie is now going to be shared with others…I know what was meant by this…but it is funny how my mind races and I think…I don’t want to share Maddie…I don’t want her to love on others…I want her smiles all for me…I want to watch her learn, communicate and grow…myself…not sharing through others…it was hard when Max went off into the world of school…I felt the same way…I wanted to hear what he had to say…I wanted to see him play with others, teach and learn…I am unwilling to share Maddie…I feel like she is mine….and I just cannot get enough of her…not even in the throws of a fit…or when I cannot understand her…I think it goes back to the diagnosis…it was my diagnosis…my issue…the one that heard the words “we only have a short window till termination will not be an option”…I was the one that heard time and time again how they could not mother a child with Down syndrome…I was the one that heard that if it was them they would terminate…and I do admit I was the one that was not accepting of her being born with Down syndrome…but then you have this child born with an extra chromosome….and suddenly everyone loves her…everyone wants to be a part of her life and her accomplishments…it is fiercely aggravating that in the womb she is not wanted…and when she takes her first breath she is a rockstar…and now I am suppose to share…why? Did you carry this human and cry every day multiple times at the notion of what was growing inside you…nope…did your body ache and your heart break when she was born and had to have life saving surgery…nope…have you gone through every surgery since…nope…have you held her tight when someone thought it was appropriate to say the “r” word in front of her…nope…but really they did not mean it in “that” way…whatever…now I must share her…now I must be thankful society wants to be part of her life….she is a child that not many want; until they meet her…then they are still glad she is my responsibility….but they want her smiles, hugs, and cute moments in time…it seems unfair to me that with all my tears; all my pain…I now have to share her…outsiders only want the happy comfortable side of Maddie life…I get that this is the part of parenthood I was not expecting or even thought about…most people want to show off there children…look how cute they are….listen to there huge vocabulary…I never did this with Maddie…in the beginning I hid her from the world…now I ignore the world….and now I have to share her…I hate it…I know selfish….I know not a pretty light….but it is what it is…and sharing is not my strong suit…

"fit" fun...