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she has a name...

Hi my name is Kim and I am a recovering bigot and ignorant sole…once was the day I agreed abortion was a woman choice…sole choice…once was ...

Wednesday, December 12, 2012

Tree hunting n pink boots



Maddie turned 3 in May...with that came a lot of huge steps (firsts) for her...she started school...rides a bus...her esophagus is staying open...she can eat popcorn and turkey wings...but there is something she just did that is bigger and that I was so excited, hopeful, proud of...she can walk in snow boots...not a big deal...yeah it kinda is!
Last year she could not walk in snow boots or any other shoe then her Nike shoes...she would just sit down and act as if she had no power of her legs...maybe she was not strong enough to move the boots one in front of the other...maybe she did not like the way they felt...but she would try daily to go out in the snow barefoot and scream and get so mad if I was not right there to get her...but this year she squeals with excitement over the pink snow boots...and this year she was able to help get our Christmas year on the mountain...It's a first!

Daddy and Maddie...
Maddie and her big brother Max...
Maddie signing cheese for you...

Happy tree hunting!

Wednesday, December 5, 2012


Maddie came home from school today...takes her coat and shoes off...and turns to me places her hands on her eyes and says boo...tears well up in my eyes and my heart fills with hope...Maddie is a rollarcoaster...of ups and downs...tears of happy and tears of bummed...the other day I was bummed I would not say sad...that is to strong of a word...maybe irritated...we were listening to a Taylor Swift song and it was about teenage stuff...love, break ups, being noticed...and I was just bummed...I want Maddie to fall in love...i want her to have sex...get married...and not have it be an issue of if its for real....or if its her being taken advantage of....I try so hard not to think about this topic...but I do...not often but at times it creeps in...so I was talking about it with chad and of course I was just telling him everything that pisses me off about Down syndrome...and another hard topic came up...of kids nominating kids with Down syndrome for a title...I am not a fan of this...at all...and I told chad that I would not let Maddie accept it...if it ever happened...he tried to argue with me...but I do not want "sympathy" for Maddie...if someone wants to honor Maddie they should and could do it everyday of the year...by sitting with her, helping her, being her friend...asking her to lunch...talking with her on the phone...but wanting to get on the local news for a so called good thing..is just not my style...I know harsh...but I am a firm believer that you can be nice everyday...not just for a college resume...chad said I feel this way because I was the mean girl...but I wasn't I was the I don't notice girl...I was to caught up in me...oh how times have changed...i do not watch any news stories about this topic...i dont like the person that was nice and let the kid win a match...maddie will know and understand if she can or cannot win a game...give people more credit then a curtousy win, title, laugh, or smile...I am choosing inclusion for Maddie because i want her to be the best Maddie she can be...i want her to stand on her own and make her own choices and decisions...i want her to be independent...and part of this is her knowing what she can and cannot do...i also want Maddie to have real friends...ones that ask her to sleep over and go to the mall...friends that talk on the phone and giggle all night...i want her to sneak out of the house and get caught by her best friends mom...i want her to have real friends that love her for her and help her up and stand up for her...I want so much for Maddie and it all stems with her communication issues...I have really had to get honest with myself and her speech...I denied that she was going to have issues...I choose not to worry about this topic...I choose to not read anything on this topic...I did not want to think Maddie could not speak clearly...I just wanted it to go away...yesterday I broke down in the disabilities office...I realized that I was admitting that Maddie has a disability...I really have never admitted this and I have always held out hope that Maddie would be different...that she would not need extra services...even though she has received extra services for years...sometimes I forget...everything about Down syndrome...and Maddie is just Maddie and I love that feeling...I love that time when all is normal...and healthy...that is most days...but sometimes loneliness creeps in...and reality cannot be ignored...I have came a long way in being Maddie's mom...and it makes me so mad when I get bummed...I just want to be ok with "it" all the time...I want to be that person...that strong person that is just thankful...

Monday, November 26, 2012

communa-what...


Here is the deal...communication with Maddie sucks...yes she has some words...some signs...some pec cards...but she needs more...I need more...the frustration level is now hit the roof for both of us...when Maddie comes home from school...and can not tell me how her day was...it is just old...I rely 100% on what the teachers tell me...she enjoyed dancing and singing...thats great but I want more...Maddie cannot tell me if someone is hurting her...and I want to know...Maddie cannot tell her friends she wants to play what they did the day before...so she lays there and screams...I want more and I know Maddie does to...i want maddie to be able to clearly state what is wrong, what she wants to eat and what she wants to do...and the kicker...Maddie's glasses have been the wrong prescription for the last 4 months...and that is simply unexceptable...I would have not tolerated a bad pair of glasses that were to strong...making me dizzy, sick, and eye strain beyond belief...all I can think of is the headaches she must have had...I have not confronted the eye glass place yet...I am still to angry...and I would not be nice...i now i know why she was throwing them...and breaking them...i thought she was just being 3...so now our specialist wants a second opinion and for us to get our glasses from them so we do not have this happen again...if I could give any new parent advice about having a child with Down syndrome it would be...they will crawl, walk, climb and test your patentince; concentrate on communication...get the best speech therapy available...start early and often...and when you think it is nothing expect more...I am reaching out for more speech...I am reaching out for privatized speech...and I should have done it earlier....it is time for more...new goal...Maddie ordering her own meal out and everyone understanding her...no signs, no signals, no pictures...words...clear, concise, and to the point...

Monday, November 19, 2012

Thanx...


Thank you for little girls with BIG personalities...thank you for little girls with pudgy hands to better wrap around my neck...thank you for little girls that sleep with 4+ dolls, 3 pillows and still in a crib...thank you to little girls that still go to sleep and stay asleep...mommy needs her rest to! Thank you to little girls that still need there mommy to cuddle at night before bed and kiss when they wake up...thank you to little girls that love barbies and dollies...that love to sing and dance...that love love...thank you to little girls that understand the importance of being herself no matter what...thank you to little girls that teach the moms the same thing...thank you to little girls that love to sit and draw and play and dress up and go to school...thank you to little girls that giggle in the car when the whole family is surrounding her and Katy Perry is on the radio...thank you to little girls that love to eat ice cream and watch musicals...thank you to little girls that enjoy the simplicity of watching the mice play at petco...thank you to little girls that still adore there brother even if there brother is not so nice...thank you to little girls that show there big brother how to be nice and patient....that to little girls that remind me why I love her father; when he is twirling her in his arms...thank you to little girls that remind the world to be nice because we all deserve it...thank you to little girls that look good in zebra pajamas and there brothers undroos...Happy Thanksgiving...

Tuesday, November 13, 2012

Update 20 D...


Roughly 2 months ago we went to the doctor to find out about Maddie and her nails falling off...I was not thrilled with the diagnoses of 20 Nail Dystrophy...it just sounds scary and a painful...a forever annoyance...the doctor suggested a vitamin...he had us give her Biotin 2500 mcg once daily...told us that it could take up to 6 months to see a change or improvement...let me say that Maddie had all the signs of this...she was born with fragile nails that just peeled away...I thought it was her heart...then we had her heart surgery and her nails did not strengthen...continued to peel...then they developed white stripes down the middle...then I decided it was her thyroid...then her toe nails and finger nails started popping off...like they were nothing...she would say ouch...and that was the extent of it...her hair was always an issue...she does not have much at all...and it did not grow...her hair is so thin...her eyelashes were non existent...they were there just not many and very short...I chalked her hair and eyelashes also to her heart, thyroid...or just a Maddie thing...so putting her on a simple vitamin seemed pointless and just another addition to already long list of medications... But surprise...it is working...cannot believe it...since Maddie was born I have only cut her nails and toe nails a hand full of times..and now I have trimmed them 2 times in a couple of months! I have only cut her hair 2 times in her life and her hair has begun to thicken and has began to grow very fast...and her eye lashes are even getting longer and fuller...I have to say I am very pleased with this remedy...20 Nail Dystrophy is a unknown why, how, and for how long...all they know is it happens...Biotin is not proven to help...scientifically...but it has helped with Maddie...yeah for good doctors that have been around forever and have seen everything!

Monday, November 5, 2012

blow Maddie blow


Even Maddie blowing her nose is cute!

Monday, October 29, 2012

why??


this is a facbook post/conversation that Chad and I were a part of...it is hard to explain the emotions I felt towards this post...I was sad...I cried...I was in panic the entire time...Chad came home and was confronted with a wife/mother that just cannot understand why people first language is up for debate...why I have to argue and still see no progress in stopping the usage of hate language...Chad reminds me this is a members only club...that people just cannot get it unless they go through it...but I disagree...I think it is a choice to be nice...I think it is a choice to be respectful...

post on facebook... Just before one of my classes starts today, my teacher tells us that she knew a couple who had a child, and they had decided that they wanted to let the child pick its own gender. She would not tell us what sex the child was, she said the sex was not the point of the story. They picked a very neutral name, and raised the child not as a boy or a girl but just as a human. They wanted their child to discover gender for itself, and make up its own mind. I thought this was a very interesting idea, actually I considered it a very thoughtful idea, and was hoping it would promote some good conversation.

Instead a man in my class, who just happens to have a pregnant wife says, "That is retarded. That child is going to be a wreck." Teacher says - "What do you mean?" Man says - "Retarded parents are going to produce retarded kids, and those parents are retarded." Teacher says - "Because they are giving their child a choice to determine its identity?" Man says - "Yes, that child is going to be as stupid as its parents. Just retarded."

FB1: Youve got to be kidding !!!!! What class is this ?

Kimberly Ludwig Sharpe: And you did not tell him that you are offended for the usage of the r word...this is highly offensive to me...and I have totally lost the whole I could big fat shit that kid does not know if he or she has a wiener...that guy n Ann coulter are as non educated as they come...I mean really people first language should be used by everyone including your teacher...smiles

FB2: He may be retarded.I can understand where he is coming from. Obviously, social behaviors would deviate from the norm and whether it's thoughtful or not, doesn't mean it's appropriate. I can clearly see how this might lead to an array of mental problems down the road, whether these influences are internal or from external influences. I think it's wrong - even if the intention was thoughtful or well intended.

Kimberly Ludwig Sharpe No i am not sure the r word implies anything but these people are stupid..n people with intellectual disabilities r not stupid...they process things differently...poor choice of words for a very interesting topic...really the r word is inappropriate always, anywhere even in a clinical setting..the person that is born being gender neutral will be just fine...because its there norm..others usually have the issue with different

FB2: Kimberly, the 'r' word isn't bad. It's in what context it's being used in. Quit holding onto your feel good bullshit. It bothers me that you honestly believe that child would be normal in society. Being 'gender neutral' is NOT normal. Regardless of how YOU might feel about it. The fact is, most people won't be okay with it. For that reason, that child is going to have incredible amounts of bullying and other pressures in his or her life that is going to be a negative affect in their development. Depression, suicidal tendencies, low self esteem, etc are going to be very real for this child. Gender roles aren't unique. They are pretty universal throughout civilizations. There's a reason for that. A biological one. I think when you go against nature, it's going to cause problems. In theory, this is great - sure, I think people should dress how they want, act how they want, pursue any interests they want. In practice, whether I agree or not, that isn't reality.

FB3: That child will be what ever he, she was ment to be . I am a parent and you do all you can to raise a kind loving human being and disregard what lifestyle they choose, The one I would be concerned with is the man that would use a word like that and not have anyone stand up and call him on it. Yuo can bet I would have, being as I have a mentaly handicapped neghew. How could anyone so low-life be in your class room And not have the teacher ask him to please choose a more fitting term for his idiot statement.

FB2: I don't think most parents are accepting of having a child that is 'gender neutral'. I think a lot of parents would have issues if their son for instance was dressing up and acting as if he was a girl. Do they love their child any less? No, I don't think they would. But they wouldn't accept that lifestyle.

Kimberly Ludwig Sharpe really the r word is not bad? wow..please rethink this...a person with intellectual disabilities may say otherwise...

Kimberly Ludwig Sharpe FB2 you are sitting in a classrom in alanta ga and you are the only white kid in the room...and the bell rings...and you get up...walk out in the hallway...and you see a buddy...and he walks up to you and says something stupid "thats nigger"...and everyone in the hallway is black and turn and look at you...and if you are lucky...they will simply say did you just say "thats nigger"...and you can imagine that you would get an earful of you should not say that word...and if you were around a bunch of black people a tad bit angry...you would get your ass kicked or killed...point being you being white are either enlightened enough not to say the word...because it is offensive to a group of people...or you are a coward and you know you will get your ass kicked...and now imagine walking down the hallway and he says something stupid and you blurt out "thats retarded" and you did not realize that a child with disabilities walking past you...and you do not noticed this person...but they noticed you and what you said...and even worse...most likely you still would say it...knowing damn well that this retard cant do anything about it...and what worse cannot...and that makes you a bully...and worse kind of bully...its the kind of high school bully that would walk up to a kindergardener and kick then in the face...and then go brag to his friends...that he kicked come kids ass...its beneath civilized individualize to use any r word, n word, hate language...at anytime...

Kimberly Ludwig Sharpe on the boy dressing like a girl...my son today has long blond hair and wears a purple snow hat...not a big deal...but to insecure adults it is...that is a you issue not a i issue...

FB2: There's a big difference in how people perceive the use of the word nigger compared to retard. I find it interesting that you are able to make this connection with the word nigger, but not able to fabricate a scenario on how this child would be treated for being 'gender neutral'. There's also a big difference with having long blond hair and wearing a purple snow hat and a son actively living the life as a woman.

Chad Sharpe: FB2...with respect, Kim and I are the parents of a beautiful little girl, named Maddie Rose...she was born with an extra chromosome resulting in her being a child with Down Syndrome...by definition that makes her intellectually disabled or in the pop lingo "retarded"...you state that there is a big difference in how people perceive nigger compared to retard... i don't believe you have any basis for your ad populum statement....you can choose to believe that we don't feel the same sense of degradation than black people feel when they hear the n-word, but that is just your belief...by all means, use your freedom of hate speech card, then one day you will have that horribly uncomfortable moment when you assert it at the expense of the intellectually disabled person next to you in line at Wal-Mart...my wife's argument is sound and ethical, your argument is that "i should be able to use it because i say so"...that is both extremely insensitive, ignorant of much better words than "retarded" to describe a person's behavior, and in bad taste...the only reason that a child that was gender ignorant would ever have issues is because people are assholes, unethical, mean-spirited assholes...people choose to be assholes and then call the genderless kid weird...

FB2: I didn't state my argument was that I should be able to use the word retard because I say so. I think you need to revisit how to use quotations - because you're not quoting what I said and you sure aren't goin to put false words in my mouth. As I said, the word retard can be used in many different contexts. That to me is much more important than labeling it as the 'r' word and having a tantrum fit anytime someone uses the word. I don't agree with someone calling a child or anyone for that matter with a learning disability a retard with the intent to degrad that person. My car retarded too long. Are you going to gasp at that? No, of course not. That word is not bein used Ina degrading manner. So, yes - I have a hard time calling it the 'r' word. It isn't in the same light as the word nigger.

FB2: I get it - there are more PC ways to go about this. I agree. Regardless, this is off track to what I was saying in regards to gender neutrality.

Chad Sharpe To you it is not the same. To people who live it, it is the same contemptuous hate speech that hurts. In general, people can't understand this until they personally experience it. Appropriate use of retard is not the issue. I disagree with you that this is off track. This is exactly the issue. Your belief that the genderless child is damaged is unfounded. Just because the majority claims that something is wrong, weird, unnatural, etc. does not make it so. I could claim as a non-religious person that raising a religious child is weird and detrimental to the natural order of things. Billions of people do it to their children and they call it normal, claiming that it does no harm to them. Why do they claim this? On what authority do they claim to assert their beliefs onto their offspring? Yet this is normal and therefore society is accepting of it. So much so, that we protect it constitutionally. Your argument that " I can clearly see how this might lead to an array of mental problems down the road, whether these influences are internal or from external influences" is exactly how homophobic bigots try to scare gays straight. "Its not normal, therefore it is evil, stupid, unnatural etc." I assert my right to call bullshit on ad populum arrogance.

FB2: I completely agree with you - people can't understand until they have personally experienced it. I agree 100% with you there.Chad, my argument isn't unfounded. I don't agree with the majority on this. I also don't think the majority is always right. But, to say that my argument isn't valid.. that's ridiculous - look up how many teenagers and adults grow up with mental disorders because of being different. How many teenagers commit suicide because of bullying? Are you prepared as a parent to put your child int hat position to play a social experiment - to see whether society is willing to accept that? What if society doesn't? What do you think is going to happen to your child? Is that responsible parenting? I'm all for education. I'm all for building tolerance. I'm not for putting a child into a lion's den and hope for the best.My argument isn't the same and isn't how homophobic bigots try to scare 'gay' people straight.

FB2: My brother is gay and I have a niece who has aspergers syndrome. I'm very much aware and in touch with their struggles.

Chad Sharpe My problem with your argument is that it is based on fear, not on love of my child's right to explore their gender. If I lived in fear of our society, then I would be raising my son and daughters to be a Christian as this is most certainly a "Christian" nation. Being a non-religious person was punishable by death at one point in our history and still is in some parts of the world. If I let society dictate my freedom to parent and raise my child to not defend their rights as a human, then mental issues may arise. I am not raising my children in that manner. I am raising them to look people in the eye and say intelligent things in defense of humanity when ignorance and intolerance abound. It would really be no different than raising a gay child in today's society. Part of being enlightened is stepping out of "normal" and being what and who you are despite what people think. These parents are giving their child a gift that most parents and people have been socialized to hate.

FB2: Chad, your child will have to interact with the world and that means society - whether you like it or not. Whether you want to accept the values of society or not. That response from society isn't always going to be met with the same degree of evaluation or consideration that you or I or someone else might put into this issue. At the present time, let's be honest - society is not going to be kind to a child that is 'gender neutral'. I agree with you - this discrimination and hate shouldn't exist. But it does. How do we change that? We educate. Not use fear as a tool. However, as I said, I think it's irresponsible, whether its right or not, to throw your kid in a lions den like that. Society is not ready for it. And that child will pay. I guarantee it.

Chad Sharpe If I lived my life that way FB2, I would have aborted my child with Down Syndrome.

FB4: For what my penny and half is worth, here is where I'm at.I think there are many types of conversations, there have been two types in particular that I have been involved in lately. There are conversations in which there is a right and a wrong. In this type there are firm statements to be made. 1+1=2, evolution is a fundamental process of biology, mass and density are related, but not the same, just as weight and mass are related but not the same. But things don't always exist in such close proximity to anything that can come close to the idea of "truth". And then it comes down to people arguing for truth, regardless of how futile the venture really is.I spent the last nine years of my life with the love of my life. He was for everything I have the ability to account for, the most important, and most beautiful thing I have ever known. I made a lot of choices with him that most people don't consider. I thought it was important to allow him to develop into what he was, as opposed to what I thought he should be. I'm mostly a series of dumb idea's, but I claim here I did something right. Neo grew into something greater than me, something profoundly better than I was. In the end it came down to me falling behind what he had become. Not being able to keep up with how great he was.I don't expect anybody to understand that. Frankly nobody can. They can again say any of thoughtless shallow and ignorant statements that I had to live through his entire life, while he was dying, and after his death. They can lay any bit of stupid on the table, and I will as politely as possible, tell them they can kiss my ass. There are the people who understand they can't understand and offer their love and empathy, and there are the rest offering what they always offered, their narrow perspective on something they never even attempted to understand.Neo almost always had to be disappointed. Because he accepted people his entire life, and most of them just judged him. It hurt him, and that hurts me. Neo only did two things wrong in his life. He was born a dog, and I took him and taught him that there was nothing wrong with being a dog. But, even though I found out in more profound ways than I wanted to how full of hate and self interest people really are, if I could turn things back, I would do every day over again. I would never change what Neo was, because being "just a dog", he was better than the people who are supposed to be so much better. I would never take away from his greatness, because of those who were not. I know that doing it over, mostly I would have to fight the world all over again, but I'd take on the universe if that's what was needed.I don't care what people thought they knew about him, what people thought about how I lived with him, how he acted, or any other detail of his life. I don't care what either stupid or hateful thing they had to say about him. I don't care about their judgment. I never factored it in, and not a chance in hell I would have. The world can be whatever it wants to be, but I had Neo, and he was the world to me.I recognize that means close to nothing to just about everybody. But it doesn't to me. I learned what is a very important lesson to me. Stopping others from being who they are, because of judgment, harassment, anger, threats, because it is not how other people do things, because it will be hard, because it will require work, because it will require you to be involved, to get uncomfortable, to rethink, are all just really different ways of being weak. It is not different in any facet of life. Just a dog, is just a nigger, is just a retard, is just a girl, is just a Jew, is just a dike, is just a spick, is just a. We separate these because of our own weaknesses, not because they are separate. It is easy to minimize the pain when it is not yours.I have a niece with down syndrome, and I really don't even think about it. The only things I ever think about are if she is OK, and if she needs anything. People are going to say narrow minded and ignorant things about her to. And I will again, politely tell them they can kiss my ass.I don't think there are such things as bad words. I think that words are words. But I also have seen how words hurt, and recognize that in the case of using words like retard it is not about what I think that matters. I think the voice that needs listened to here is not mine, it is instead the voice of those that have not been heard. I don't really care what I think about the usage of retard, I care about what the people who have been hurt by its usage think. I care what they have to tell me about what it does to them, how it effects them.When my niece gets older I hope that she can look to me as somebody who chose to love her freely, I hope when she looks back on me she can never think of me saying words that hurt her. And if I have to take my views about words and modify it a little bit, so that I can give that to her, of course I will. She will know people who say mean things about her, but I would rather be the person by her side than the one across from her.Progress often asks of us to redefine how we look at things. It is old ways of looking at things that hold us back, not move us forward.

FB5: I wanted to leave George Carlin's argument on euphamatic language here, because I think he brings up a valuable point. If they hadn't changed the language of 'shell shock' (a very serious battle condition, of course), to things like....post-traumatic stress disorder, those veterans from previous wars might be cared for more. There's no reason we should be scared of words, or phrases, unless they negatively effect us in some way that it is less applicable to use them. I think it is wrong to label mental retardation, a medically based term used for many years, as 'intellectual and developmental disabilities,' and a slew of others that I think will negatively affect the way we go about caring for and handling (I will say it) intellectually disabled persons. At that same regard, it has become in pop culture a negatively-associated term, a derogatory name. I guess my point here, is, where do we draw the line? Does terminology directly influence how we treat people with cognitive impairments, ect....or does our treatment of these conditions decide the term? It bothers me because in a way I think people take advantage of things they don't understand, and so we create an entirely new language to cope with it.

FB5: 'We' being the people who actually know or care for intellectually disabled persons.

FB4: I don't think it can be argued that the change in language from shell shock to post traumatic stress disorder was done as a act of compassion, or even as one that was in the best interest of the men and woman suffering from it. That is politics.I would never ask for the government to make any legislation against free speech, except to support free speech. These issues are not solved in senate, they may begin to be resolved when people can take a look in the mirror and get honest about what is looking back at them.Changing language does not correct people taking advantage of what they don't understand. Not saying nigger does not mean your not a racist. Not calling woman sluts, is not giving them equality. You can't legislate away ignorance, anymore than you can hide it. This is not about redefining language. To me, its about redefining ourselves. I'm not afraid of that.

FB3: In my opinion it all boils down to havinh manners,, because using degrading words shows a deep lack of respect for humans that are being described. I went back over all the posts and it seemed to me after finding out that some of us have a handi-capped person in our life that Kevin started backtracking pretty fast. People judge and always will, they will judge Chad and Kims little girl just the way they judged Neo for his breed , size and instantly asumed he would be mean. Man kind does not take the time to see the inside of anything or anyone, because they are too afraid they may find a little bit of themselves.

thoughts??? anyone???

Monday, October 22, 2012

Social...


I am very sensitive about anything social with Maddie...my first impressions of a young woman with Down syndrome were very scary to me...and when the dignosis of Maddie was real it was what I pictured in my head...and through the years many of the stereo types have been broken down...but still I am very sensitive and over protective over anything Maddie does in public or socially...having a home daycare has intensified this so much that at times I have thought of it as to much emotionally for me...I have a home daycare to raise my children in an environment providing a educational/home based setting...my background is in early childhood so it was a perfect fit...with Max it was fun and rewarding...I loved to teach him and watch him be mentored by older kids all under my watch...then Maddie came...when I reached out to our local child development center that would provide services to Maddie one of my first questions was do I keep having a daycare...or will it be to much for her...really what I was asking was would it be to much for me...they said this setting was the best setting for Maddie's development...that it would model and nurture what she needed...so I never thought twice about it...my home daycare became Maddie's classroom....and my greatest fear...no longer was it fun to watch what my child could or could not do...no longer was it fun to see her excluded from play because of the lack of communication...I struggled with watching children who are younger then her pass her by with milestones and words...I think struggle is a kind word for my true feelings of saddness...day in and day out I watch what Maddie cannot do...for the people who say Maddie is good for Maddie...yes that is true...and that she has mastered a lot of things...but not at the rate I have come to expect...and this truly is a members only understanding that no one can understand...unless you are the mother of the child that is not doing a particular something...Maddie socially has always tested as typical and above average on the charts...but what those tests do not do is show the whole picture...yes Maddie can play dolls and dress up, she can zoom cars and roar like a dinosaur...but what they do not gauge is how the interaction happens...Maddie does not take no for an answer...she does not except when I am finished you can have the toy...yes this is typical for a one year old...it is not for a three year old...negotiation for toys begins at age one...understanding a trade...maybe not a fair trade but they understand the give and take...by age two they understand the quality of a trade and the give and take that happens in a child's negotion of a desired toy or tool...Maddie thinks she is above the trade and is very elementary in her negotiation skills...I have always said the most important thing to teach a child before kindergarden is how to get there shovel back from a child that has taken it...without tears, fighting, or just taking...by proper negotiation...Maddie is 3 and she cannot communicate to get her toy back...she will scream, tackle the child down and take it back...socially this is not acceptable...funny...but not in the "real" world... if I did not know better I would think Maddie is ok...but I do know better and I know what her interaction should look like...and I think she does to...but her impulse control is off the charts...she cannot keep her hands to herself...her screaming and stomping is alarming to say the least...Maddie plays very good with kiddos that are a bit older that are willing to accommodate her every wish...this is the real world and most kiddos do not want to play like this and nor should they be expected...I will tell Maddie no and redirect her 100 times and she will do it again for good measure...I have never met a more stubborn child...I know she knows better...I can see her wheels turning but she just wants it that bad she will not give up...I do enjoy her milestones and celebrate all of them...what is nothing to some -is huge to us...the other night in tumbling the kids did not want to sit by Maddie and were saying she was a baby...she is older then all of them...but that is there perception of a girl that is small in stature and cannot communicate with them...my daycare kiddos will treat her as a baby also and I have to remind them she is a big girl and will be included and that she can do things herself...most of these kids are younger then her...but they see her delays...I still get sad by each comment...I still cry when I see her struggle...I still want to protect instead of seize the teachable moment...I also do not want to force the issue with others or with Maddie...this is a unknown of helping raise a child that I am very unfamiliar...Maddie is so many things...good things...great things...I am just at a loss when it comes to her interactions with the outside world...in the beginning I would be offended by the smallest or biggest of things...now not so much...now I get a sting...a pit in my tummy...quick...I rationalize each comment or gesture...but the reality is the same...Maddie will always be good for Maddie...but i am not sure if that is good enough for me...when do I stop making excuses for things she cannot do and excuses for the perceptions that people have about Maddie...when is it politically correct to be honest about my expectations of myself Maddie and the public...when is it ok not to apologize for Maddie yelling at a stranger in the mall; because that's her telling her story...when is it ok to tell the person that used the "r" word that it offends me and that I hate them for it...when is it ok to tell the old women that my pointing staring and whispering at my child is not a compliment and is really annoying...and how do I get it through to people that Down syndrome only means one thing...an extra chromosome...that's it nothing more...and it's ok not to attach anything else to it...no but...no and...no nothing...Down syndrome means a 3rd copy of the 21st chromosome...no need to think any more about it...

Monday, October 15, 2012

Happy Happens...


And it does...really...as I hear Maddie singing in the mornings...happy fills me up...when I enter her bedroom and she is standing up dancing in her bed...happy is the emotion that fills me...when she grabs my face and kisses me with passion...happy is it...pure...not questioned...happiness...never...I mean never did I think i could feel this emotion again...it flitted in the beginning of our journey...but it was rare and fleeting...almost empty...because I knew it was missing...and I knew I was robbing my family of the good me...the happy me...the funny me...this digging out from depression has been rough to say the least...on me and my family...but I missed me...and I wanted to be healthy for my family...little by little I made changes...I regulated who I interacted with...I learned to say I don't care...I started exercising daily...I ate less proceed foods...I talked positive to me...i hugged Chad longer...I held my kids more with a smile on my face...little things...I only read and watch things that will educate me not infuriate me...and if they do I talked through them and found my own truth...and in this process a strange realization crept in...one I never thought I would have...I was sad and almost disappointed when I realized Maddie made us no more special as a family...that we were really no different then the family across the street...having Maddie in our lives makes us no better, no happier, no more stressful, no more anything...just a family of four...everything has fallen into place...even doctors visits are routine and mundane...when we received Maddie's diagnoses never did I think we would be looked at as a family in normal terms...but we are and that in it's self is hard to wrap my head around....I thought I would have a sense of relief...a sense of joy...a big woop woop! But I got nothin! I got a big...wait a minute...we are a special family because we have Maddie...nope we are a special family because we all are special in our own way...that's it...nothing more...issues we have with Maddie we have with Max...different....but the same...again something in the beginning I could have not been told...I would not have believed...through this one thing has been abundantly true for me...that I have to find my own truth, reality, happiness, peace no one else can do it...I am a person that cannot be told what to do or how to do it...I have to fumble through...frustrating...but I am who I am...happy...and ok...and my daughter and son...are normal, funny, frustrating, and are going to change the world...because they are my kids of course!

Monday, October 8, 2012

typical days


This is a collection of pictures that best represent Maddie...what I love about them is they are not posed or thought out...just real life, typical, normal Maddie...and what they do is show others that designer genes...are just that designer...it does not mean life is any more crazy...when the doctor asked me to terminate or kill Maddie as she was kicking my tummy...I remember thinking this will never be...none of this will happen...I think i thought Maddie would just sit and look Down syndrome...I don't think in those early days I thought Maddie would do much of anything...let alone who she is today...there is no high functioning or low functioning with designer genes...there is just extra chromosomes...that is a stereo type that needs to be shut down...if that is the case then Max and Maddie are both very high functioning kiddos...Maddie walks, communicates, gets in trouble, climbs, falls asleep in the car, goes to school, has friends, plays with barbies and dolls, and she will grow up and be an adult and she will talk like an adult and act like an adult...she is NOT a eternal child...
HAPpY DOwN SYNdROMe MOntH!

Thursday, October 4, 2012

Surprise 21...


This is a list of 21 surprises that I have had along the way... 1. Cuter, funner, more then I thought she would be 2. Naughty, and more spunky 3. Smarter and more in the moment 4. Fits into our family perfect 5. Independent 6. Typical 7. Manipulative 8. Relatively healthy 9. She is still alive 10. And I am thankful for it 11. She has individual wants and needs 12. She can make grown ups very uncomfortable 13. She can make grown ups more thoughtful 14. She loves music and dancing 15. Her medications are manageable 16. She understands her role 17. An extra chromosome makes her no different 18. I would not take the extra away or change it 19. I still would take away her health issues 20. I am ok 21. I survived At the moment of diagnosis none of this was in my truth...it was gone taken...the more you know!

Friday, September 28, 2012


"kjsdj skdjf kj ojn" "your welcome Maddie" "we friends"...a conversation that went on between Maddie and friends...it went on and on for a good 20 minutes or so...Maddie and the kids were cutting flowers and putting them in big pots...when Maddie plays with other kiddos that are in her inner circle they get her...they understand her...she is able to express to them her part...she is working on taking turns when speaking...she loves to role play with others...so I was taken back the other day when we were at the pool and she was talking to some older folks and they were so worried about what she was saying and asking why they and I could not understand her they forgot to talk with her...they just laughed at her...these are old people I get it...but when they talk with me I don't just laugh at them...I talk with them I head nod...I am nice...I finally told them to just talk with her and that she will continue to have a conversation with them...or just stop laughing at her and she will go away...I am not sure where the disconnect happens in humans to be cruel...when extra chromosomes deserves a look over and no acknowledgement or laugh in the face...kiddos are innately good...they see truth...they see nice...they learn hate and discrimination...Maddie is 3 years old and she gets it...she is fully capable of having her feeling hurt...she understands everything you say to her...she may not want to hear you and ignore you...but she gets it...and this is a prime example why I hesitate to let Maddie venture into public...the other day Maddie went on her first field trip with her class to the fire station...I originally said no to field trips...to scary...the teacher called and asked permission...we discussed it and decided it was good for Maddie...plus I had a insider there to help watch over Maddie...he is a family friend and a firefighter and he said she was awesome...participated with all the activities and was appropriate, self controlled, and eager to be there...not sure that could have gone any better...and I know she thrives without me...I am her safe place and she needs to be uncomfortable to learn...today I handed her scissors to cut flowers and she made sure they were placed the safe way in her little hands...these are all big moments in our world...a world I am scared to let Maddie out in...because of the communication piece that is not there...but in our little world she communicates very effectively...very appropriate...I can see the importance of her in school early intervention...i can also see why I have to let her out and go...because she has to learn what to say and do when she is offended or thankful...she has to learn to effectively survive in this world...I am sad it has to be so young...but as I go through this I see the importance of the village...

Tuesday, September 25, 2012

not so long ago...


Do you remember scared? Do you remember the pit in your tummy that may or may not have gone away...do you remember the hallow unrecognizable look in your whole being...it was not the dignosis that gave me scared...it was the unknown...it was the unknown if the baby was going to live or die...and if i was going to have to make that choice...do you really remember scared...I do...I remember the throw up state of my life...where I felt at any minute I could throw up and lose it...competely...cry on a whim...and the anger that over took me...the why me...why us...why now...and today I wish I never would see another person in this state...I wish upon no one my journey...I thought i did...when I was going through the beginning of being Maddie's mom I wanted everyone to experience the scared...I wanted others to hurt and feel the raw pain I felt...I did not want to be alone...now I feel like this journey was mine...and I really do not think just anyone can handle it...not that I am better...I just know how to cameleon my way through life...I was damaged goods after Maddie...I was sad, scared, hurt, broken...now I am ok..just ok...I am not sure I will ever be that girl I once was...why...because I have met scared...and it does not end...when Maddie has a blood test, a surgery, another unknown...I get that scared pit in my tummy...it is the unknown that I cannot get over...it is not the extra goodness...it is the extra unknowns...scared is not what is comfortable...it is not something you can wish away, pray away, or drink away...it is always there in the pit of my tummy and the back of my mind...it has forever changed me...and that is ok...I got something pretty great out of my biggest unknown...

Monday, September 24, 2012

I don't know...


You know when you are judged on your parenting skills...and you do not know what to say...or how to handle them...and all the while you feel guilty and ashamed...well this is a common occurrence for me...parenting is something I find not to be smooth or just second nature...I remember when i was not a parent I thought I would be so awesome...I had all the answers...I aced my early childhood classes in college...I knew what philosophy I most agreed with and came natural to me...it was the Reggio Amileo approach...in a nut shell learn through play and experience...that there is no wrong way to get to your desired outcome as long as there is learning...so of course this is my philosophy in parenting...I allow my children to have opinions and choices from a very young age...I have taught them to have a voice and to use that voice...this is were the problem lies...not everyone thinks kids should have a opinion...It is good in theory...but not good when your 7 year old is telling an unpopular truth...or not acting in the societal norm..my son is what you would call bright, inquisitive, brash, and tactless...he is a combination of me and his dad...I am the tactless one...and I still struggle with being nice and not so truthful...then Maddie enters the picture...I have been told how to raise her since the NICU...my community baby...but now that she is 3 and independent...behaviors of hers are not so cute...her stomping of the foot with her arms crossed and yelling gibberish at me...is not so great...I was asked the other day if I wanted to have a makeover or do over with my son...if I wanted to change him...change him from being so brash and not nice at times...I gave a look of horror...and one i think that the person knew I was not happy about...but it got me thinking...I teach him to say no now so he can say no when a stranger is trying to touch him or a friend is trying to get him to make a bad choice...I teach him to tell his truth with a reason and evidence because someday he will have to teach the world about tolerance for his sister and others...I want Maddie to be just as vocal just and brash...I do not want a makeover for my children...I want them to be unforgettable...I want them to teach the world something...the other day there was a person that kept getting in Maddie's face...I wanted to back them up...I did once to show Maddie how to do it...and then I waited and waited for her to do it...to physically tell them no and back them up with her hand...for some reason people think they have to talk slow, loud, and in Maddie face...in reality they just need to talk nice and she will listen...but this person just kept doing this...Maddie would back up and she would come closer...finally after about 30 minutes of this she did it...she backed her up with her hand and said no...if Max does this he is a mean 7 year old...when Maddie does this she is independent...I want my kids to be nice and polite but I think adults need to be also...I think as adults we get moody and do not want to be touched or bugged...but if your a kid you just have to take it and smile...I love how everyone wants a smile from Maddie...but sometimes Maddie is not into giving a smile...sometimes she wants to be left alone...and yes I encourage this...and then in the next breath am embarrassed my kid is not nice... I let my kids get dirty and squeeze the glue out into a big blob of a mess...I do this because who cares...I let Maddie draw on herself...because when she is older it won't be ok...the only thing I know about parenting...I know nothing and just hope for the best...and maybe just maybe my kids will grow up to be productive and contributing members of our society...maybe...and then I remember how nice my children were at age 2...they were nice, cute, charming, and everything was ok...I just think kids have a lot of pressure on them...charming an adult should not be one of them...

Wednesday, September 19, 2012

20 WhAT??


As I am walking out to greet Maddie's bus today I hear mommmm mommmm LoUD BIG and it was awesome...the bus monitor told me she un-clicked her seat belt and got out of her seat when she saw out house! I said YEAH for milestones...and I thought to myself this is awesome...maybe unsafe...but I love it...I love that she can undo a seat belt! I love that she is totally a 3 year old doing naughty 3 year old behavior...I love that she says mom...I feel like I have waited a lifetime for this...and I love that she is excited to come home...and of course I love that she is home in one piece dirty sweaty and tired from a fun solid learning experience...I think it is funny that the reaction from the bus monitor was horror...I get she has to be responsible...but this is a big deal for my kid! And we must celebrate it... A while back about a year or so I wrote about Maddie's nails...how brittle, breaking, ugly and peeling...now they just fall off...I did not think to much about it...it's nails...and we have had bigger issues to think about to deal with....so her nails were put on the to do list...so her pediatrician had me go to the dermatologist to see if it was a fungus or virus or something...his diagnosis is twenty nail dystrophy...WHAT...really it just sounds annoying...so his remedy vitamin B...so I guess Maddie will try it...he said we will hope to see a difference in 4 to 6 months...reaching the Internet...it said there is no treatment...he also mentioned her lack of vitamin B is why her hair is so weird...I have chalked most things about Maddie as it is just a Maddie thing...no explanation...no reason...just it is Maddie's body being it own little extra goodness...I will call the pediatrician and see if I need to put her on a multiple vitamin in case other nutrients are just not enough for her growing body...have any of you had this issue?? Birthday parties...it's funny when Maddie was born I was so worried she would not be invited to any parties...she is...and I am not sure I am much of a fan...a little girl invited Maddie to her 3 year old party...very nice...but I do not know her or her mom...we just met 2 weeks ago...so this is the problem...I cannot scope out or predict the environment...therefore we will not go...I do not want chaos with blow up toys that Maddie cannot do with ease and confidence...I do not want woman and there fake grins and misconceptions of my daughter...the questions...sometimes I am just not into teachable moments...and that is what a party of unknowns turns into...maybe next time...i know we will have many more opportunities for parties...this is just not the age or time...I just feel really good about Maddie her progress her new skills...And do not want any let downs...I know me being selfish again!

Sunday, September 16, 2012


Maddie going to school...

Thursday, September 13, 2012

Neat...


Maddie has been in school for a whopping 3 weeks now...and she is a ROCKSTAR! Of course she loves it...and of course she has so much to say about it...if only I could understand it...that's another post...but the other day she came home with a all about me book..very common and typical for a preschool project...teachers getting to know the kiddos...it was cute and has a hand print and a foot print...and then it is a answer question kind of book...so when I saw it in her backpack I got sad...but to my surprise they got answers out of her...and by golly they were the right answers...the first question was what she likes to eat...pizza...eyes...grey...hair...brown...likes to play with...friends...color....and outside...I was curious how her teachers were able to get her to communicate these answers...Maddie is very good at yes and no questions...but how does she pick pizza? I talked with the teacher and she said they showed her pictures and she pointed...that she made eye contact and smiled...yeah! This is a HUGE thing for us...it made me cry and exhale...to completely see and understand why school is so important for Maddie...at 3 years old...she is typical...she is normal...and she is amazing...I love that she has role models of good behavior...appropriate behavior...I love that she is in a class with kiddos that have a little extra and some that don't...I love that she has 3 teachers and 3 therapists all looking out for her...and I love that her first therapists get to see her in the hall and check up on her...I know there will be some rough days...but I think Maddie will only be better because of this experience...for something that made me puke, fight, cry, and lose a lot of sleep...it has been surprisingly positive and natural...

Wednesday, September 5, 2012

Ups n Downs


Maddie began another year of tumbling...this year she graduated to the all by herself class...we were not nervous about it...she has shown me with school that she is really good with or with out us...yes this tugs at my heart and ego...but when I first found out about Maddie's designer jeans I wanted her to be independent...I never thought it would happen by 3 years old...of course this is not a predictor of the future and her driving a car...but she is labeled and she is blowing the expectations and societies limitations of her out of the water...Maddie will change the perception of Down syndrome in our community...last night she went into her class we grabbed the carpet square and it was like we never left...I said see ya...she waved...she did her summersaults and danced...but what I got giddy about was she walked across the balance beam unassisted...a few slips...but she got right back up and pushed the teacher away for help...Maddie is so proud of herself...today she sang a song to the bus staff...they are very taken with her...I can tell they are good because she greets them with a big smile...The bus, school, tumbling...wow my girl can do it all...and there it is the reality of Maddie straight in the face...Maddie is that kid...and she is that stereotype of what I think of when i think of Down syndrome...and it catches me off guard and makes me get very uneasy and freak out a bit...Maddie is a very close talker and loud....and touches and hugs everyone she knows...to much...incisively...awkward for our culture and comfort...and I hate it...I have to stop it...now....but I do not know how...Maddie does not respond to time out...keep your hands to yourself...redirection...nothing...I can not trust her with kids younger or smaller then her or bigger for that matter...she does not know when to stop...yes other kids do this...but that is so NOT the point...this is something that I know can be a problem for adult Maddie...so I need to stop it now...but how...I just keep redirecting...talking with her...but nothing seems to get through...I turn around and there she is...hands on babies face....hugging a child that does not want to be hugged...I do not want her to have kids run from her...I do not want kids to be afraid of her...or annoyed by her...I do not tell the kids that Maddie is a designer child...I tell them to tell Maddie...no...stop touching me...keep your hands to yourself...Maddie was not always like this...there was a time when she was to herself and would go with no one...now she talks to everyone...says hi with a wave and a smile...and she just looks at them with distain when the acknowledgment is not reciprocated...Maddie is thriving in most parts of her development...she is imitating and I was told that is a beginning stage of speech...so is that the issue...am I the one that is modeling the close talking...because I kneel down to talk with my daycare kiddos...am I telling her to hug because I hug the kiddos...and if so...how do I model different...I can't...Maddie is a mini me...she walks, talks, and acts like me...I love it...but this scares me...I just love her...and I do not want her to be chastised for a social norm...this is the fine line that I do not now what to do...I do not want her ego hurt because someone does not like a close talking loud hugging babbling child in there face...I do not want her pushed or ignored...I want her embraced for her excitement for life...

Wednesday, August 29, 2012

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...

Thursday, August 23, 2012

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...

Sunday, August 19, 2012

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...

Saturday, August 11, 2012

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!

Friday, August 10, 2012

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....

Monday, August 6, 2012

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!

Wednesday, August 1, 2012

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!

Thursday, July 19, 2012

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

Tuesday, July 17, 2012

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


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

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.


Sunday, July 15, 2012

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...