angry esophagus again ;(

the week that will not end...on Tuesday we went bowling...we were enjoying some nachos...Maddie grabbed a hand full...I tried to sweep her mouth and lets just say her new teeth HURT! one thing led to another and at 4 am we were on the cold Wyoming road to Denver to get what ever was in out...we ran into a GI doctor that said that nothing was stuck -to me demanding a swallow study...sure enough there it was plain as day...olives, onions and hamburger...by 2:30 pm Wednesday Maddie was in surgery to remove the stuck food...during the time in the ER we were patronised by doctors and nurses on her demeanor...how well behaved she was how just calm she was...they kept telling me she just seems tired...by them interpreting her behavior like this...came with hours in the ER...triage is a bitch...Maddie can breath when she has a partially blocked airway...if she sleeps she will stop breathing for a bit and wake up with a gasp...she cannot eat or drink and her breathing sounded like a frog in her throat...so 15+ hours she went without food or water...but she was a good girl so she could wait (sigh)...by not being heard I became a very mean Mommy...and then the guilt on how I treat people seeps in...but I got what I needed for Maddie but I also burned some bridges in the process...it is a hard position and one I am not comfortable in...by Wednesday night we were released from the hospital...Thursday morning we were at the heart doctor...and Maddie is what they would call "normal"...that is the first time I have heard those words in regards to Maddie...her heart has made a full repair and we do not have to go back until next year!!! all awhile I was fighting with the GI doctor...calling other pediatric GI doctors...Maddie has a stricture and it has to be dilated now...I do not want selfishly to miss anymore work...I do not want to drag Max out of school...I do not want to stay in hotels anymore...I want this done now...and on this years deductible...so while we wondering around the Natural History Museum waiting for them to call me and confirm another appointment...I called the GI doctor again and they had a cancellation...we rushed to that appointment...Chad had words with the doctor on the situation...and now we have surgery today...Maddie will have her 3 dilation on her esphogus in 6 months...this time it will be done with a balloon...she is sitting beside me playing elmo and has no idea that in a few hours she will be under anesethia again and being poked prodded and her esophagus violated...thank goodness it is Friday...

Sugar Sugar...

Ready Maddie?

Mom's not looking!

I do Mom!

No teasing Max!

Smiles

cannot get enough!

so Silly!

say bye bye...

to this week! wow we have been the sickooo family for the last month! it began with Maddie puking for days, then Max...then me and Chad! thank goodness Max could help with Maddie while his parents had there heads in the toilet...then this week...Maddie started acting off...her smashed toe turned wired shades of purple...and began to smell...on the same day she started puking again...low grade fever...and 3 new teeth! 2 molars and another weird shaped tooth on the bottom...so I figured it was an infected toe and new teeth...went to the doctor and the poor girl has strep throat...then I got it....and Max and Chad...what the heck! I think we need a vacation! and Maddie's toe it is infected...and she will lose the nail...antibiotics are our friend...very thankful for science and good doctors...

overrated...

Sometimes the frustration just boils up…I am VERY comfortable with kids/toddlers…I am what you would call an expert of sorts…I have an early childhood degree…I have worked in the Boys & Girls Clubs for 10 years…and I have owned and operated my own home daycare for 5 years…and I am at a loss with Maddie…completely clueless when it comes to her…she just does not listen…and if she is listening then she is not following through on the task I am asking…yes her behaviors are very typical of most 1 and 2 year olds…but it does not mean I have to like it…or just chalk it up to Maddie being Maddie…when she cries I still get upset…when she gets hurt I still cry…and she cannot communicate or better yet will not communicate to me what is wanted then I get as equally frustrated…I think I have told Maddie at least 100 times not to climb on the kitchen table to sit, dance, eat, draw, and or paint…I think I have taken a stool away from her 50 times because there is a reason I have counters and I put things that Maddie should not have on them i.e. choking hazards…when she touches anything and then has to taste it I go crazy! tasting dirt, toilets, mud, rocks, glue, my hair, her hair, other kids hair, just wired…but the kicker of all kickers is when Maddie screams to scream because she does not want to walk from Max’s room to where I am…she is not hurt, she is not incapable…she is lazy…when I walk in to see what is up it is a hi with a smile and hands up…Maddie is my shadow…I do love my shadow just not the shadow that I am consistently having to go around or over or pick up…I know or I think someday I will miss these days…I know I should be thankful I am not in the days wondering if Maddie will do this or that or the other thing! because she is doing this, that and the other thing -times 3…and some things I never ever thought imaginable…

a little petty...off my chest...

the women that said to me "Maddie seems to understand what is being said" is now her case worker...cannot say I am thrilled about this...so naturally I threw a fit to Chad and started asking questions...questions about her...I asked how much experience has she had...and what experience has she had with our community in regards to Down syndrome..and what is her background with Down syndrome...honestly I could care less if someone has knowledge of any other "ability"...I just want them to know Down syndrome...I do not think a person has to be as close to it as me...but I do like experience and a little thought before they speak...I am not sure she is ready to work with families if she has very limited knowledge in what we are facing...this person is the person that will help us and guide us through Maddie's first introduction to "real" school...I am not sure she has what it takes to get the job done the way I want it done...I am very nervous about this...this is the first time I have said hold up not so fast...conflict is not something I like...but Maddie deserves the best and frankly so do we as her family...I just do not want to deal with someone in this capacity that I have to teach what to say, how to it and how I will be offended if the wrong thing is said....the other day while I was listening to someone else's conversation...in my ob/gyn office a women came out and said to the receptionist...I always get nervous about you know having a baby with my age and such...I thought to myself should I say no what stuff...I am not sure I understand your worry...at all...I do not understand why people worry about Ds and babies...there are much bigger issues to worry about then Ds...there is EA, heart, lungs, etc...but age and Ds that is just nonsense and a waste of a stressor...I really am not sympathetic to someone that is having a baby...you choose to get pregnant take the baby and love it...be thankful it is alive...I know this is cold but really as a society and adults we should know what comes with having sex and having a baby...just because you want a baby with blond hair and blue eyes you may not get it...deal with it...the Duggers...I am so not a fan of them...I think and you can disagree...they are way out of line on what they think is appropriate for our population and for raising children...they do not understand the word simplify...I would like to know how a mother and father can have enough time for all of them...when I struggle with my two...so I got that off my chest...but the HUGE reason I am not a fan...I think it is VERY suspicious that they have not been "blessed" enough to have a child like mine...she is 45 years old 19 kids and counting and no chromosomal things -none...that just sits funny...I am not mocking a miscarriage that is rough and cannot imagine the pain...but I wonder why more people are not having a child like my Maddie...considering statistically we should...and really everyone should have a Maddie...they would laugh more, love more, grow more, understand the true meaning of why life is worth living...with a Maddie they would see what is possible instead of always wanting more...just saying having a "healthy" baby can be taken many different ways...

so 2!

This is a snap shot of how Maddie spends her day...and why Mommie is sooo tired!

Maddie the Dino Digger

I see bones...brother

look what I found

one more bite

yum snow!

it is like this

stools are my friend

this looks tastie

I see the fork...but...

I went potty...really

see! with my cute dress

ouch!

bad deal! sad toe...

time heals all...

It seems that I cannot live without Down syndrome...I am not sure I want to live without it either...which is stunning and quite confusing...in the beginning of this what feels like a forever journey...I loathed Down syndrome...I did not like anything about it...somehow beauty has become synonymous with Down syndrome and my perception of it...a sense of "normal" comes with Down syndrome...it startled me today when I was thinking if I would have Maddie all over again...if I would choose to do things the same exact way...and the answer surprised me...I would...I would take Maddie just the way she is again...I may take away the health issues...but I would not take away what makes Maddie -Maddie...my life is now consumed with Maddie and Maddie's routine...I cannot fathom my life with out the extra chromosome and what comes with that little bit of extra goodness...I was asked the other day if I would have another child if I knew for sure it would be born with Down syndrome...I could not answer that question out loud...because that answer would be no...not because I am scared of it...not because I am selfish and would not want another child born with all the extra's that comes with Down syndrome...but I think no because I would rather adopt a child born with Down syndrome then create another...when there are so many children looking for forever families...in the beginning I thought I was being punished and asked why me...why did I have to have a human born with Down syndrome...never once thinking about Maddie and her feelings it was all about me...now I see life through her eyes and for some reason it does not seem so hard...it seems effortless to love, to learn, to grow...I guess time does heal...

shake of the head...

Going bonkers…Maddie is driving me silly! everything that is put away is now not! clothes out of drawers…then in to the laundry basket or on the floor! silverware out of the drawer…thrown across room...toys in boxes...out on the floor…markers in containers…put in garbage...she can open the cabinets and out comes everything (yes the are child proof –just not Maddie proof…with a head nod and a “there”…when I try to redirect Maddie simply rolls her eyes and continues…not very nice from a 2 year old! in 5 minutes she was in the bathroom playing in the toilet…going outside and driving a hot wheel on the deck almost falling off…and at the sink to wash her hands…busy is an understatement with her…today I brought snow in the house for her to play and keep busy…she decided it was fun to stomp in it and all around, throw it and best of all eat it--naturally…I was trying to get meaningful play with her…demonstrating cars, barbies, bowls, etc…she just likes to takeover and destroy…to think I was worried she would not be typical or normal! I however am very tired…so the blog and house cleaning have taken to the back-burner! If my eyes are not on Maddie there is trouble being found!

Finger Painting...

Maddie has been exploring her creative artistic side...and becoming a teacher...

Yummy!

let me show you...big guy!

Maddie does it this way...

What Mom red is my color!

so cute!

a little whine...

Maddie what color is the puppy? Maddie what color is the puppy? Maddie what color is the puppy? say purple…purple…purple…Maddie blank stare and then a side smile…have you ever heard Maddie speak a clear word in the 3 months you have known her? NOOOOOOO…I finally spoke up in front of everyone and said she cannot speak…it was not fun…I was not proud of it…but what am I suppose to do? Continue letting everyone wait, stare, and courtesy smile…then she added two new songs to tumbling…not a huge deal…but it is to Maddie…when the song started and we were not doing tummy rockers like we should have…well lets just say…Maddie in my lap sucking her thumb and twiddling my hair…Maddie’s response to anything that is different or changed up in her world…I knew maybe this day would come that Maddie would show signs of distress with change…but I did not know it would be so hard for me to watch…I felt like I could not help her cope or understand…we will continue going to tumbling…I know it is so good for her…I also am learning life skills I need to help Maddie…maybe I will get some tact…maybe some confidence in standing up for Maddie…I caught myself after this encounter jumping in to do things to fast for Maddie…the kids bring the carpet squares to the balance beam…most kids take a straight line and throw it down…Maddie has a particular spot she likes to put it and it has to be perfect…so again everybody is waiting on Maddie…when Maddie puts her puppy in the box after we are done… she has to pickup the box and put the box away…I think it is great…but sometimes I get the feeling others are sick of Maddie taking so much time…I am not sure how much to push Maddie…I am not sure how to encourage her…I say this because I do not get much of a response out of her…Maddie will respond to me for food…example…I ask good? more? and she will respond with a yes or no…but if it is a task…help me set the table? empty the dishwasher? Nothing…so I lead her to the dishwasher and she helps…I give her a plate and she throws it on the table…I love the pecs we are doing she can hand me a card and it tells me what she wants…and she has been signing more since the introduction of this program…but I cannot seem to ask her a simple question and get the response I am looking for…and one last thing…hearing her say Mom would be great!

just a little thing...

trust...I am not sure when I lost trust in others and the world around me...but I have lost it...this does not mean I am not happy...it does not mean that I am thinking negative...it is just what it is...I no longer think things happen because that is the way it is suppose to be...I no longer trust that people are good and that they want the best for Maddie...and I certainly do not trust that in the end everything works out...I have just learned to adjust...the other day someone said to me...that "Maddie seems to understand what I say"...I thought what a dip! if this is how people think of people born with Ds how would I trust the world to respect my child...Maddie is a fully capable human...she has a uniquely wonderful look about her that gives the impression to question her existence for some ignorant soles...I often assume people are nice to us because Maddie was born with Down syndrome...I know she is cute but the reaction and attention from others is sometimes overwhelming...she is like a rock star when she walks into anywhere...girls follow her and hug her and adults just smile...this however I secretly love and hope it last forever and a day! I do not trust someone will stop Maddie from being abused by another human...after the Penn State debacle...it seems like it may be to big of a task for some to speak up for others...however the trust I am struggling at the moment with is me not trusting Maddie...I am constantly hovering...constantly looking for choking hazards...and she is not happy about it...yesterday she yelled at me because I would not give her a rice krispie treat...I gave it to her as if to show her how she could not eat it...and I even said "here we go to Denver"...and she ate it no problem...teeth help...since then she has made it known what she can eat...in two days this is all the new things she has loved to try...taco, pickle, nutri grain bar, french fry, chicken nugget and a sucker...slowly I will have to trust Maddie...she is worth it and it really is not fair to her that her mom is so scared of her death I have put her in a safe choke free padded wall environment...and it is not doing her any good...I suppose I could take this as a learning opportunity...learn how to trust Maddie and maybe learn how to trust the world...

taking for granted is what I have done for to long...not understanding the importance of the little things...I believe this selfishness made me sad in a way about life...always looking for more and bigger...I did not find true peace...happiness is relative...peace is truly what I strive for...someone once told me if I can sit in silence that I was ok...he was correct...I again can sit in silence...I do not need anything filling the white noise and it is peace...since I love to do lists of 21...here is 21 small reasons I am thankful of my Maddie...
1. she can climbs and is naughty about it
2. she can eat a whole macaroni noodle
3. she can brush her teeth and spit
4. she can give me a pecs cards to tell me what she wants
5. she can wrestle as good as the boys
6. she can say "good"
7. she can chew and swallow
8. she tells me she is ready for nite nite
9. she smiles
10. she sighs and knows she is important
11. she give great kisses with licks
12. she wants to know more
13. she laughs
14. she loves to go anywhere
15. she loves her brother and Dad
16. she walks around knowing she owns this world
17. she is just cuddly when she is sick not whiney
18. she can take a shower by herself wash/rinse hair
19. she sweeps her hair out of her face and says "there"
20. she helps me set the table
21. she is just Maddie

Speak

Fine lines…teeter tottering…balancing…that is what I do when I am very apprehensive of questions and interactions in regards to Maddie’s development…tumbling is wonderful…Maddie is a joy to watch…she is growing so much from this experience…but I cringe every time the teacher asks her a question…not that I do not think she knows the answer…she clearly does…but she does not have the spoken words…not even close to a spoken word for her colors…the teacher will ask what color of puppy she wants to hold…Maddie just looks at her…the 1 year olds tellS the teacher in broken language but you hear the nuance to the word and get the color out of it…and it seems to be repetitive questions about colors…I get what she is trying to do…and I would not want to exclude Maddie from this…but it is just a obvious hurt to my selfish mojo…she also said that she was changing up the songs soon…Maddie has not even gotten the hang of the all moves for the beginner songs…I just wish we could stay on them till Maddie gets up and participates in the whole song with all the slick dance moves…she practices the moves all week…and just this week she did almost the whole teddy bear song with ALL the moves…and jumping…this is the next thing we will be doing in class…that is Maddie’s year goal…not 6 month goal…I know it is extra practice, therapy and she will surprise us all…she is trying so hard to jump…but I know the way milestones work…lots and lots of practice and then maybe it will happen…just because she is close does not mean the actual jump will be anytime soon…I forget that Maddie is considered delayed…I forget that she is not developmentally where a “normal” 2 ½ year old is…so when it is there staring at me it is hard not to get uncomfortable…I am not sad…I am not frustrated…I am just trying to be peaceful and mindful about it…I am trying to compare Maddie to yesterday not today…tumbling by far has been the best thing we could have done for Maddie…she loves it…I love it and it is something only we share…so I will figure out how to get over it…and just go with the flow…but sometimes this is easier said then done…

Halloween Funnzooo...

Maddie and Max at the pumpkin patch

loves

picture perfect

Maddie's normal!

my pumpkins

I eat everything!

Ewok and Pteradactyl

sweet

I can fly

wait for me!

I can do this!

let me out! I am read for some candy!

This year Maddie tricked and treated by herself...she walked to every door...she held her pumpkin...she helped everyone put the candy in her bucket...she amazed me...who would have thought that Halloween would be so great...Maddie is very independent...and knew exactly what to do...she climbed stairs...she smiled...she talked...she did it...this was another important milestone for Maddie...yeah for each year that my Maddie grows a bit, learns a bit, and eats a bit!

Interpretive Dance with Mads

pondering...

Why is it devastating to have a child born with Down syndrome? I am not sure…today as I was watching Maddie play…this thought came into my head…and I threw around different things…like -she is not like everyone else…and then I thought who cares…because she looks a “bit” different…and then I thought not really…she is cuter and more interesting…but certainly not different…so why was I so devastated about getting the “diagnosis”…I think it was purely selfish fear of the unknown…now I question why I was depressed…why was I so sad and so judgmental…this was purely a refection of self hatred…that only I could remedy…why be devastated of a child? A child I helped conceive…a child I planned for and longed for…again purely a selfish indulgence…if having a child is only for the “perfect” accessory on my hip…I probably should not have children…they grow up, they speak…and they will disappoint my delusional view of parenthood…parenthood was hard with a “normal” child…I am always at a loss of how to teach, model and discipline…most people with or without children seem to have unrealistic opinion and remedy that does not work for us…so back to why be devastated about Maddie…I cannot answer this question clearly…and I am not sure if want to…to know how it feels to get a “diagnosis” it is a uniquely mine experience…hard to explain even harder to hear…I am over the poor me and poor others that may have a child they did not expect…Maddie is the pride and joy of my life…and I could not be more proud of how she points her finger, says hi, eats food, hugs her brother, rides a hot wheel, and dances to every song…so in the closing of Down syndrome awareness month…awareness happens in this house 365 days a year 24 hours a day…we live and breath it…and are very proud to be a member of these designer genes!

Blog Hop! Meet Maddie!

Maddie painting her spider...

Maddie finger painting...

I think she missed a spot...

so hungry...painting is hard work!

I'll get this!

misplaced...

The blame game…I try not to blame people for things…I guess that is a skill you try to learn fairly early in life…it does make life go smoother…and a sense of peace is put into place when you can forgive and forget…I blame someone that is alive and breathing for Maddie having an extra chromosome…I blame her for her heart, her esophagus, her eyes, the medication she takes daily…I blame her for saving Maddie’s life…I blame her for saving mine…she does not know that I blame her…I am not sure that is a burden anyone should carry…but my anxiety for her…is off the charts…my resentment towards her is NOT rational…but it makes me feel in some delusional way that Maddie and me will be ok…because it is not my fault…I know how Down syndrome works…I know how it happens…but this is my fairy tale mind at work…and a coping mechanism I use to get through…as I spill the beans that I have misplaced blame…I am healing…I am letting go…for her making my child this way…this way…Maddie is perfection wrapped up in a very nice package…I saw this women the other day…and I just wanted to cry…I talked really fast and in circles…I got hot and sweaty…she even asked if I was taking something for my anxiety…I said no…and said it just happens when she is around…but did not go any further…I then showed off Maddie…she commented that she was surprised how “with it” Maddie was…that Maddie did not seemed delayed at all…I smiled…I smiled because Maddie is ok…that she is a “normal” 2 year old…that I am ok…that I am a “normal” mother of a child born with Down syndrome…that my family is in tact and life is nice…

COOL RiDer

if you really wanna know.

what i want in a CHilD

Well, I'm lookin' for a dream on a mean machine (mega Hot Wheel)

With hell in HeR eyes.

I want a devil in skin tight leather, (or pink jammies!)

And she's gonna be wild as the wind. (she already is)

And one fine night, I'll be holdin' on tight...

To a coooool rider, a coooool rider.

she'll be cool enough,

Whhoa ohhhh

If it takes forever,

Then I'll wait forever.

No ordinary GIrl,

No ordinary Girl is gonna do.

I want a rider that's cool. (the coolest little chicka!)

I want a coooooool rider,

A cool, cool, cool, cool rider.

I want a coooooool rider,

 

A cool, cool, cool, cool rider.

I want a C-O-O-L R-I-D-E-R.

I need a C-O-O-L R-I-D-E-R. 

I got my COOL RIDER / Maddox Rose
lyrics from Grease 2...the movie...

again...

another black eye...fit + table = shiner

Wordless Wednesday...