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:
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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


--------------------------------------------------------

This message (including any attachments) is only for the use of the person(s) for whom it is intended. It may contain Mattel confidential and/or trade secret information. If you are not the intended recipient, you should not copy, distribute or use this information for any purpose, and you should delete this message and inform the sender immediately.

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...

mini me...

“you know I don’t want a baby like yours”…yeah someone said it! to me…offensive as this sounds…it was not…I just shook my head and rolled my eyes…for sometime now I have been struggling with bigger issues…my ego…who am I, where do I fit in…when Maddie was born I tried to grasp and cling to people I could trust…people who had been a part of my pre-Maddie life…when I became a mother for the first time…I was so proud of myself…I thought I could do anything…I help create this beautiful person…Max has been handsome since the day he was born…a great physique, smile, long eye lashes…perfect health…and now that he is older he is smart, funny, likable…and a great big brother…I have always looked at him and thought…how great I was because of him…I helped create him…I helped raise him…he was a product of me…when he misbehaves I internalize this and wonder what I did wrong in parenting him…becoming a mother consumed me and I began to identify with only being a mom…so when I had Maddie…my ego was gone…I created--no longer was there a –we- created…it was a me issue…I created a person I could not understand…that I could not empathize with…someone I could not look at and identify with … this is not a mini me…I felt I did something wrong and was less of a women...I have always wanted a little girl just like the little girl I was…precocious, naughty, cute, funny, full of drama and wit…and then I had Maddie…all these things I just thought would never come to fruition…I remember thinking to myself…I will never be fulfilled or challenged in parenting Maddie…because she will always be sweet, kind, nice, well behaved, she will just sit there and look like she has Down syndrome…as ruthless as this sounds…it was my truth…and the voice in my head…I have had some time to think lately…to gather some perspective on my misconceptions of mothering Maddie…for a lack of a better words…I was wrong…dead wrong…Maddie has and is the most precocious child I have ever met…she is not what I would call nice…I would not call her happy…I would call her impatient…I would call her annoyed at my existence on a regular basis…she is 3 and already I get on her last nerve…as she grunts at me and stomps her foot…with a turn of a hip and head and a eye roll to top off her utter disbelief that I have told her no or tried to help her…Maddie is a mini me…but better…she can make grown men weep and talk like a baby…she makes old women squeal…and she has captured the hearts of almost every person that has come in contact with…she is not forgettable…or just a person born with Down syndrome…so the other day when we were at the Doctor…the nurse was asking questions and getting annoyed with me and Maddie…neither one of us was giving her much attention...I was not in the mood…everything is in her chart…just read it and you will understand! and then she asked “how is she doing?” I know a pretty standard question…but one that pisses me off…how is Maddie doing? I asked again…then followed up the question with --in what context are you referring to? her health and if so what part of her heath? heart, esophagus, thyroid, acid reflux, etc..her development? physical, social, emotional…what is --how is she doing mean it is a very loaded question…they want me to say fine…but fine is not good enough or it really does not tell the story of Maddie…with the nurse not liking me questioning her…she asked if I was even her mother…now that question pissed me off…that question offended me…because I get being scared that you can not cut it as a mother to Maddie and wanting to “try” to prevent "it"…but to be asked the question if I am her mother…as I am holding her in my arms…that is when I call foul…that is when mama bear rises…Maddie is a mini me…she talks like me...she walks like me…she looks like me...and she is comfortable with me...we are inseparable...if anything Maddie is the best thing I have ever done in my life…and to question me as her mother is just offensive…and it is with out question inappropriate...I wanted to ask her why she would ask such a question...but once again you can not fix stupid…

Beyonce WhOOOO???

another first...

well well well...I guess I survived the first day of BIG girl pre-school...and so did the Maddie...

uni-brow...

there is always a question on if you should ask a VERY shallow self serving question...should you be that mom...should you be that vain in public--out loud...should you say this...should you ask that...well...I did...I was that mom...Maddie had her dilation Friday...I have become very comfortable with the doctors, nurses, anesthesia, check in attendants/specialists, and cna's...they know Maddie; she knows them; I know them...we talk family, life, and shop...they call her by name without hesitation...fill her charts without question...it has become so routine...and "normal"...and then I did it...I asked...Chad mentioned that Maddie was developing a uni-brow...and Maddie is starting pre school Wednesday...so I told him...I was going to ask my favorite nurse to pluck while she was under general anesthesia...or if I could pluck...what I did not expect was that I would have to get clearance from the doctor and anesthesiologist...so I did it anyway...the nurse understood my annoyance of the uni-brow and the trepidation of plucking while she was all squirmy wormy...and she said YES! and laughed...I asked the doctor and he said yes and asked if I wanted to throw in a pedi...and anesthesiologist said he would paint her nails to match her toes...so all in all it was a win of a day...Maddie got her eye brows did...the staff got a laugh and I got out of the torture of plucking them myself...oh yes and Maddie's esophagus is staying where it should so we are officially off the every 3 week rotation and are going to a 2 month esophagram here in Casper....and yes I have officially become that mom! toddlers and tiara her we come!

shaving cream funnzzo...WW

much to much...

Last place…not a big deal I suppose…but as Maddie plays tag I feel all sorts of emotions…happiness that she is working on running…excitement that she is trying her darn-d-est…gratitude because she is playing with other kiddos and laughing…but then deep down there is sadness…that Maddie will be last most of the time…it is just realistic…it is just the truth in my eyes…yeah you can say this, that or another thing to try to make me feel better…but the reality is…some may even say…who cares…at least she is happy and healthy…yeah that is always great until it is your child…we have track day around here…where the kiddos enjoy a day of track competitions…and recently a couple parents commented how fast there child was…”2 first places”…like it really meant something…but does it? I guess it does when your kid is the fastest…as I rolled my eyes and thought it is a track day…really who cares…I do; I care…I hate when my kids are not first, well liked, forgotten…Chad would say oh Kim get over it…who cares…I am not thinking that being first is what bothers me…it is that Maddie is different…that she runs different…that she carries her self different…when people see her they smile…and they say ooohhhh with a side head nod…why…how can they tell that Maddie was born with Down syndrome…Maddie looks just like she is suppose to look…and she is just how she is suppose to be…but still she is different…her delays are so in my face right know it is almost unnerving…to be with her all day and with other kids her same age is just to much at times…it would be nice to just live in a Maddie bubble…where only us as a family lived…with no comparisons…with no comments from outsiders…with no looks of opinion from others…I just want to see Maddie for Maddie…but I cant…I see her with other kiddos…and I see her impulse control lacking…I see that she is behind age appropriate behaviors, play, communication, motor skills…school will not fix this…it will help…but I just want her to say Mom…I just want her to tell me what she is thinking…I just want her to understand what I am trying to teach her…the reality of being Maddie’s mom is that I have to be more patient then I have ever thought of being…more consistent and not such a free spirit…somedays I think all I can so is love her and kiss her…and to hell with the teaching…

until...

What if “it” is not enough…”it” is therapy, play, interaction, tumbling, purposeful everything….what if I am so greedy with Maddie that she is not getting everything she could possibly need…what if I look back when she is 6 years old and know that I have not done enough to prepare her for school; for life…and now all my intuitions of pre birth Maddie were wrong and have failed me…all my assumptions were wrong…my Maddie will not be this way or that way…she will never be a “typical” Down syndrome person…somehow my Maddie will be different…she will go beyond expectations and prove all wrong on what we read or hear…and there in lies the problem…Maddie is not typical to common assumptions about Ds children…she is very good at everything she tries to do… Chad and I were told that more is better when it comes to Maddie…more repetitions with everything is just better…this is hard to understand when I have always been told to raise Maddie like I raised Max…so that is all good and very appropriate until it is not…and then more is expected…more is what Maddie will need…more of what you ask…more of everything…can you narrow it down…well I can…but it is so tedious so ridiculous that it is down right frustrating…again she will learn like Max until she does not…Maddie is set on the potty everyday to pee…and everyday she sits there…she smiles, she talks, she is just so proud of herself…then take her off the potty…pee on the floor…how many reps…more…tumbling class…it has taken her all year…every Thursday at 530 pm to get the moves that she has been taught this entire school year…and still she needs more…so when thinking about Maddie and therapy and school…I hated the thought even made myself sick over sending Maddie to school…then I agreed to 2 days per week…and then we are told she needs more…more days…more repetitions…I knew this going into being Maddie’s mom that she would need more…but I thought she would be different…I thought she would be like Max….but she is not…so Maddie is great until she is not…she needs more…until she does not…Maddie masters things in an awkward round about kind of way…Maddie walks…just not steady…Maddie dances….just not steady….Maddie runs….just not steady….Maddie talks…just not legible to all…Maddie can draw, paint, color…just not for a long duration of time…Maddie can drive a "play" car…just not safe…Maddie can climb…just not get climb down….Maddie can anticipate the next step…just not consistently….Maddie can do everything you can do…just until she does not…so with all the worries…with all the what if’s and mores…Maddie will attend school 4 days a week…and I will continue to think I can use mothers intuition to raise Maddie…until I cant…

I can eat...

Dilatations (stretching of esophagus) are working!! nachos anyone! and lets not forget she is getting the hang of chewing! what a BIG girl...