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...