2nd

Day 2 of preschool for Maddie...I knew she was ready...and I knew I was ready...I tried to talk myself in to that I was sad and I would miss her..but it is for 3 hrs a day...not a big deal...what I had a problem with is letting her go outside into the world with no control of her interactions...today I wondered if people refer to Maddie as "high functioning" I often hear people describe a person with Down syndrome in this way...I am not a fan of it...but I get it...but that was my trepidation with letting Maddie go...was other people and there assumptions of Maddie...I wish I did not care what people thought about Maddie...but I do...I wonder if they think I am lazy because she cannot communicate or not potty trained...I wonder if they think I do not care because I work and put her on a bus to go to school...Chad would say screw them and don't care...but i have always cared what others think...I have always been that person people watching and wondering what that persons story is...are they happy, sad, lonely...do they have kids are they pregnant...I always wonder...and as I let go of my kiddos little by little...giving trust where it is deserved...I wonder what people think of the family with 2 kids...that let's there son grown his hair long and have a very honest opinion about all things and is 6... the other child that babbles very loud and also has opinion on everything...and me acting like I understand every word that is being said...we are dysfunctional at best...but it is our "normal"...as Maddie stepped off the bus today grinning ear to ear...telling me all about her day...I was relieved that she was safe back in my watchful eye...can I already say I see the benefits of preschool on day 2...yesterday when she got on the bus she cried...but she was ok within a couple minutes...I did not baby her...I said have a good day and gave her a kiss...when she came home yesterday she cried when she saw me...but it was short lived and more a release of emotion on her part...today she got on the bus no tears...kissed me and waived bye...when she came home she was squealing with delight...and very happy...she was ready for me to let her go...I know Maddie likes to be a big girl...but I am the one that wants to keep her small...until it inconveniences me...then I complain she is not doing something...I think the next time I meet a person without designer jeans...I will describe them as either high or low functioning...do you think they will notice...

What's u thinking...

No Maddie...No Maddie...Maddie does not stop...Maddie can't talk...Maddie is a baby...Maddie is sad...and she is...and she knows...and then she goes and plays by herself...and I am here...to watch, facilitate, teach other children to be nice and patient with my girl...she starts school Tuesday...I am not sure Maddie's day will be much different...her interactions with others kiddos being frustrated that either one can understand the other...this really bums me out...and back I want to go...into my reclusive hole...where we see no one and no one can see her...Maddie is very tendered hearted..if Chad even looks cross at her she cries...she gets upset that it is always a No Maddie...I try to model other methods of redirection with my daycare kiddos...but they are kids! They are expected to be selfish...sharing is a trait you learn...so is empathy...how do I explain that Maddie learns different then they do...Max is even seeing the delays and will tell the other kiddos...be nice; Maddie is my baby and she does not learn like you...she does not know better...this breaks my heart...she does know better...I think she does anyway...today we were reading a book and I was asking questions throughout the story one of the 2 year olds answered the question with great imagination and made me smile...and then I was sad...when will Maddie be able to answer my questions with her imagination...I know it is in there...she makes herself giggle with such a belly roar that what is happening in head must be great! I so want to know my Maddie more...I want to understand my Maddie more...this communication or lack of is the pits...I yearn for the day she can tell me in her own words about her dreams...I cannot wait for the day to hear her say mommy again...I have taken for granted the ease of Max and how he learns and communicates...I think school will be good for Maddie...but also think it will bring new frustrations...

more...

this weekend we went on a fossil hunt...we went to a small town in Wyoming...about 5000 people...so not to small...but it felt very lonely...while Chad and Max were hunting for lost treasure...Maddie and I decided to go on a different adventure...small shops, farmer's markets, and good experiences for Maddie...so we dropped the boys off at the museum and me and Maddie went back to the hotel to take a shower...I went in to the continental breakfast area and this lady gives a huge smile and a gush...I assumed it was because Maddie was cute and walked in and said hi to everyone...and then there she was in my face...right there...not leaving me alone...I said hi...and got my coffee...I was letting Maddie choose a breakfast item...and not thinking much about anything...then I noticed the worker talking with a couple and them all staring at Maddie...again I was thinking they are commenting on the cuteness of my girl...no biggie...and then she did it...she walks over to me and said...isn't great how they just stay young forever?? and I smiled and thought nothing of the comment...I am not thinking Down syndrome...that is not the first thing I think about anymore...and I really am always amazed when people bring it up...I always wonder how they can tell! Maddie looks just like Maddie...not Down syndrome...anyway...the worker says my cousin is 32 years old...and I am SCREAMING in my head HERE WE GO!! I know someone "with" story...so now I am an expert! my cousin was so cute she said in her 20's she was still playing with barbies and dolls...so cute! REALLY you think that is cute...HUH you must not be the mother of that 20 year old!! WTF! then she says now in her 30's she is not as cute...small and happy but not as cute! AGAIN!!! WTF...really...I am her mother and talking about what you think is my future...my biggest fears are what you are explaining...why is it people cannot just look and smile...and just keep there mouths shut...I feel like I have come a long way in my journey of accepting being Maddie's mother...I am still in doubt of my abilities of mothering her and doing my best...I am still scared of the future and what it holds...but as of late we have been living in the now and it feels good...I did not let this ignorance get me to down...but it did make me hyper sensitive to the small town we were in...I looked up from Maddie more and noticed more...more stares...more whispers...and I just ignored them and thought it was good to show them an example of a typical 3 year old...loud, naughty, happy, and touching everything in sight...I am over the stupid...I am over people just not thinking before they speak...and then I think...was I like this...did I actually say things like this...I hope not...the eternal child label of Down syndrome makes me crazy...it is something I do not understand...in fact it makes me VERY uneasy...like I shy away of thinking about it- like I do death...Chad told me that this person probably did not not have the intervention and early education that Maddie has...that small towns in Wyoming may not have the services that our town has...I do not see Maddie as a eternal child...I see her as "typical"...I see her delays of course...but for every "hard" task she has overcome...she has sat up, crawled, walked and now she is talking and even has some words...she is starting school...she is throwing fits and learning to manipulate...I am not sure I see her any different then I do a "typical" child...I just see her doing the behaviors for longer and with more frustration that we are not understanding her wants and needs...but with Maddie I see determination...I see yearning to master a task not just do it once and move on...Maddie has a spark in her...I just do not want ignorance to blow it out...this weekend was a great weekend...time to reflect and my kids got an experience of a lifetime...Max held a stegosaurus spike...he helped dust off diplodocus bones...and he caught horny toads...Maddie swam her little heart out...danced, sang and played...like a "normal" "typical" family...nothing is different from us...I just wish others would get that...

summer fun...

Maddie loves water machines! LOVES them...it was a first for us both! At one point she would not stop pushing the button to accelerate...she loves FAST! I am so happy to have a lake lover on my hands...and not one that wants to fish!

Esophogas

When Maddie was diagnosed with Down syndrome in vitro...it came with more...so we went and visited with a surgeon...and I know I have said this before...she said that if this is all that is wrong with her...it is a great diagnosis...so I held that close and I would refer to that comment throughout my pregnancy and after Maddie was born...so Maddie had the "fix" surgery...she had her esophagus attached to her stomach and a blockage removed from her esophagus to her trachea...done "fixed"...and then Maddie wanted to eat BIG people food...so I would give her pured foods and she would choke...I would give her a macaroni noodle that was mushed or cut up in 3...and she would choke...I would give her a mushy half of a cheerio...and she would choke...so chobonni was a staple in Maddie's diet...it has been two years from then...10 surgeries...and finally her esophagus is staying open...this is the first time in 3 1/2 years that we do not have a procedure scheduled...we have no planned trips to Denver...so in that time I have referred back to what the young surgeon said to me...this is a great diagnosis...an "easy" "fix"...what I have come away with...it is an easy procedure for specialists...it is easy for them to diagnosis and "fix"...it is not for the parent...it is not for the patient...I am excited that things are looking up for us...that Maddie is seeming to do better and just in time for BIG girl school...so as I reflect back...I would give suggestions for TEF/EA survivors and there parents some of my helpful hints... be informed of where the stricture is...know who your surgeon is...and what tests and procedures will be performed...and who will perform them...have a plan on who to call and what to do if your child chokes...know what is expected of your child and you...ask questions...write the questions down...write the answers down...ask advice but do NOT take as gospel...know that this is a doctor that has not tried to put it into practice...in theory feeding your child should be easy...it should be natural...with a child like Maddie it is NOT easy and it is not natural...does it get better...there are days that Maddie eats good...and then there are days she does not...some will say...that is with any 3 year old...sure...but please do not say this to a parent with a challenged eater...I would say go with what you think is best...it is a hard leap to take...but I have had doctors tell me to try this...and then look horrified that I tried "it"...its ok for your child to eat breakfast for every meal...if it works do it...if we supplemented to much with Maddie she was not hungry and would not eat...it took Maddie 3 years to learn to chew...and I still have to prompt her...last week we were told that there are no restrictions on Maddie's eating...to go with what works...I took this advice and ran with it...but I have always given Maddie what she wants to eat just motified...why? because I am her mother...and I have never forgotten that...I have learned doctors are NOT always right...and they do not always know what they are talking about...also be careful of "support" groups...fear mongering may NOT be the intention...but when a parent is scared and unknowing they tend to listen more and react with out common sense...I did...and it left me feeling helpless with no control of my daughters health care...however now I feel like the expert...I have done the research...I have read, asked questions, and experienced enough with a strictured esophagus I know what works for Maddie...TEF/EA sucks....it is not the best diagnosis but it is survivable and completely tolerable....

my scientist...

Max went to Teton Science Camp...and Maddie went to KW science camp! She loved looking in the microscope! Just like her daddy!

Bruno Mars - Just the Way You Are (Cover by MattyBRaps ft. Tyler Ward)

What is up!

Summer has been more then BUSY for us...planes, trains, long long car rides...preschool...I have mixed feeling about how Maddie's first school experience went...the transition of us leaving her was more difficult then I imagined...the letting go and trusting others was forced...and Maddie gained a bit through this experience she learned to say goodbye with a waive...she learned we would comeback to get her...and she got to know her teacher...a routine was established...I am feeling better about the new school year...but there is a but...I was able to observe Maddie while she was at school...I was watching her outside lining up to come in from recess...Maddie was not paying attention watching the other kiddos...the boy next to her was much bigger then her and she just could not help touching him then she pushed him with one hand...he did not moved so she decided to push him with two hands till he fell to the ground! Then she was satisfied and said "there" turned around and stood in line...although I was proud of her persistence and not being afraid of a larger child...I was surprised by her naughtiness and the lack of displine by her teachers...there were 3 teachers there and instead of telling her not to push, touch and say sorry...they ignored it...not a big deal...yeah it kind of is...Maddie is a pint sized bully...she will tackle others and pull hair...so I have to be on her consistanly to hopefully change these behaviors...when I brought it up to her teachers...they went back to her size and cuteness...I just asked them to be more consistent with her discipline and self control issues...while I was obseving another time her one on ones was not paying attention to her...so Maddie was staring at her and purposely putting things in her mouth...then when the teacher noticed she would take the items from Maddie tell her yucky and resume the conversation with the other teacher...this happened 3 more times...I was just expecting more...again I mentioned something and was explained it was summer so it was less structured...not what I was wanting to hear...then I begin to question...does Maddie need more...I have to rely on what people tell me about Maddie her behavior and what they think she is getting out of a particular expeicne...the teacher tried to give me highlights of what Maddie did, experienced, and learned...but I still think she needs more...of course Maddie will take the bus to school in the fall...of course she will attend school 4 days a week...and of course she will receive extra therapies...but will it be enough...how will I know if Maddie is getting enough attention...enough of the "more"...the highlight of school...Maddie found a friend...he is a few months older then her...they hold hands...they found each other and the friendship was not forced...they slide together and sit together...she does not push him...and did I mention he also carries a little extra!

a Presidental trip to DC...

Chasing Fireflies...a first for Max n Maddie

Room Service -- yummy!

Chad being presented with the Presidential Education Award in Math and Science...So PROUD of him!

Max holding a Triceratops horn!

digging for fossils...its hard work

getting her groove on!

sweet music at the Smithsonian Folk Days Festival

follow up...American Girl

I did write American Girl...here is what I wrote and here is there response not sure I am satisfied with there response! I will ponder what my next move is! 

Original Message Follows:
------------------------
Hello! my name is Kim Sharpe and I have a daughter that is 3 years old.
I was under the impression that every little girl could find a doll just
for her. Maddie my daughter was born with light brown hair and ALMOND
blue eyes. the eyes are significant. she was born with Down syndrome and
there is not a doll to represent her and many of her friends. when I
visited a store I was told there was a bald doll. fortunately my Maddie
has not endured leukemia but for kiddos with Down syndrome it is a
probable diagnosis. many of her friends have survived this diagnosis and
I am thankful you have thought of them. however, I would like my little
girl to have a doll that represents her beauty and her uniqueness. she
fully understands the world around her and would love to play with a
doll that shows her how beautiful she is. thank you for your time. I
have posted a post on my blog about this subject and you are welcome to
check out my Maddie to see what a GReAt girl she is. http://chromosomallyenhanced21.blogspot.com/



From: American Girl
To: lionsdenchildcare@yahoo.com
Sent: Tuesday, July 17, 2012 7:48 AM
Subject: Re: Comment about American Girl or Our Site

Dear Ms. Sharpe,

We certainly understand your desire for a My American Girl® doll with
Down syndrome for your daughter, Maddie.  Over the years, we have
received many requests for characters facing various medical conditions
or physical challenges.  We realize that girls want a character to which
they can relate.

All of these requests are important to us, as well as to the people who
are asking to create specific characters.  Although we get our ideas
from our own staff, we sincerely appreciate requests such as yours as
they help us determine if we are meeting the needs of the girls we
serve.  We will continue to do our best to bring you products and
services of the highest quality.  Please watch for new developments in
our catalogues and on our website at americangirl.com.

Again, we thank you for sharing your request.

Sincerely,

American Girl Customer Service
Phone: 1-800-845-0005 or 608-831-5210
Fax: 608-828-4790
Available Monday - Sunday 7 a.m. - 10 p.m. Central Time


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dollies...

American Girl...I was so looking forward to going to this store...I was so excited to show Maddie all the dollies love...and I had heard that there was a doll for EVERY girl...so this put me over the top...we were at the Mall of America and Maddie and I headed to the American Girl store...Max and Chad headed to Lego land...I could hardly walk fast enough...I have been searching for a doll that looks like Maddie since the day she was born...I have searched the internet for dolls went to little stores, big stores and never have I found a doll like Maddie...it is in the eyes that I have been searching...I have found Down syndrome dolls on the internet but they do not look like Maddie they are wrinkled around the eyes...and they exaggerate Down syndrome traits...and not in a beautiful way...my Maddie is beautiful and deserves a doll that is her and reflects her...I had a blonde hair doll when I was younger and the doll even had green eyes...I loved her...but finding a light brown blue eyed doll with almond eyes has been VERY challenging...so this was it...I just knew I could find the doll...of course Maddie is as excited as me! so we enter the store and I am immediately overwhelmed...by the people the dolls...off in the distance I see a doll with no hair and in a wheelchair...so I thought for sure there would be a doll with light brown hair and blue almond eyes...we walk past the hair salon for dolls...past the coffee shop for dolls we go up and down the escalator...and learn there are a variety of dolls and babies...but in my search I could not find one doll with light brown hair and blue almond eyes...so a sales associate stops me and asks if I need help...I ask if they have a doll with Down syndrome...I am not sure why time goes into slow motion at this point but it does...she says no but we have a doll that has no hair! I giggle at her and say Maddie has hair! I need a baby with light brown hair and blue almond eyes...she said no but maybe someday...someday does not work for my little girl...today I need a doll that looks like her...her favorite doll is on its last leg! she is a Japanese doll with almond brown eyes and black hair...which she has successfully eaten...I know gross but it is a habit we are trying to break...her other fav doll has bright pink hair also that she eats quite frequently...i know Maddie does not care...but I do...I bought her a cabbage patch doll with light brown hair and blue eyes, glasses and cute dress that matches her...but she has not taken to this doll...the love of the cabbage patch doll -is not...I love cabbage patch dolls when I was a kid...so we left the American store with no doll...with no representation of Maddie...I will not settle for a doll that is not perfect...I have this thing about dolls...I love them and I want my daughter to have the perfect doll to love and help keep her safe...I am not sure if American doll can call themselves American doll when it does not represent all American girls...really it would not be hard to make a light brown blue eyed doll...with a touch of almond...