Chromosomally Enhanced

TO MUCH TALK

2012-02-08T12:36:00.000-08:00

I cannot stand when someone says to me..."maybe you should talk with someone, like a counselor"...REALLY! picture it I am at the doctors office and there is an intern with my doctor...we are discussing ways to lower my blood pressure...choices medication, antianxeity medication, and life changes example; diet, exercise, red wine, stress level...so this is something I have been battling since Maddie was born...so 2 almost 3 years later I know I have to start taking a more proactive approach to my health...I changed my diet to the Meterarian Diet, a glass of red wine 3 times or so a week...I exercise daily...and then there is my stress level...his thought was breathing techniques...ok I can handle that I do need to work on it...but the interns comment talk with someone! I simply replied "why would I talk with someone who has no idea what I am going through...has never had a child with Ds, TEF, and societies ignorance" WHY! if I can find someone that has lived in my shoes in relation to a child with needs...then I would go...but if you got answers from a book and you hear it went well...no thanks! I get that I am a bit abrasive but I do not think doctors know much about everything...unless it is there area of concentration...it was clear she knew what she knew from a book...so nothing she says is worth my time...I know very "Kim" of me...but recommending me for counseling is just a phrase that makes me red...she then proceeded to say that "maybe things will get better...that maybe my stress level with my child may decrease"...I said that "her esophogas closes every couple of months and that is not going away....miracles are not happening here...and then I explained that Down syndrome is not going away it is something we will live with forever..and with that comes stress that I am not accustom to"...read my file or ask a question before you sound lazy for not reading up about me....its all there! and yes I am at peace with Down syndrome...but as Maddie changes so do my stressors...it is what it is...so I decided to take blood pressure medication, continue my healthy lifestyle change...and breath deep!

more...

2012-02-02T19:42:00.000-08:00

as I dropped to my knees and cried...why? because my baby said "more"...Maddie said "more" and repeated it for Chad...this is the first word in a long time...and the very first word that she has repeated with practice...it had purpose and it was clear as day...Maddie with a huge smile hugged me...and then did not understand why I did not get her more cereal! earlier today she signed her first sign unprompted...she signed cereal...Maddie has many signs and does the PECS cards but most words and requests are prompted and with minimal choice...this is a huge step I think in her language...something that is frustrating to no end...Maddie has so much to say and none of the words to tell her story...she babbles all day and has many meaningful conversations...people listen to her and then laugh and smile...with no idea what she is saying...including me...it is heartbreaking to watch with no hope of a miracle...I know that Maddie and talking clearly will take a very long time...but today I am going to smile and cry tears of HapPy and relief...

Dinner with the family!

2012-01-29T17:20:00.001-08:00

Make a video - it's fun, easy and free!
www.onetruemedia.com

U give Ds a Bad Name...

2012-01-28T17:57:00.000-08:00

the wonderful wizard of Dr Oz was -unfortunate...why oh why did I have to record Dr Oz...because it said it was about having babies at an older maternal age...so I knew Down syndrome would be mentioned...and it was...it was like I was setting myself for this...but I just wanted to understand what all the fuss is about...I want to understand why Maddie has the stigma of being unfortunate and a burden to society...no other risk factor was talked about just Down syndrome...there was a women who said she wanted to have her biological child with all her features and the sound of her laugh...Maddie has my laugh...she has my naughtiness...Maddie has my face and body type...I got the clone I was looking and yearning for...so why is Maddie considered unfortunate...why is it that when I was pregnant with Maddie and told someone she was going to be born with Down syndrome it was considered sad and that person wanted to give me sympathy...and then when Maddie entered this world breathing on her own...she became a blessing...a miracle...a person I should be thankful for...special...someone who would change my life forever...and give me more then I could have imagined...Dr Oz and his guests said unfortunate...the other "specialist" said that there are early tests to help eliminate the risks of babies being born with health issues and abnormalities...and if you are rich you can design the perfect human...I hate to crush there fairytale baby making...but the doctors and experts give Down syndrome a bad name...they are the ones that put Down syndrome in the "unfortunate" category...Maddie is not suffering -she is not unfortunate and she is not a burden...Maddie breathes in and out...she talks -she dances -she is alive...and yet no one wants her...silly really...instead of ridding ourselves of Down syndrome why not cure cancer...why not cure hunger and neglect...how about learning to love ourselves enough to be ok with having a baby one did not think they could raise and love...many times I am told that they could never do "it"...I always think what is "it" and "it" is Down syndrome...I went to my home town today...and I have not been there a lot lately...I have not been there I realized because I have been embarrassed of Maddie...I have been scared to acknowledge that I could not make a human that everyone would love...sure they love her now...because it is nice to say...and I am expected to be positive and thankful for every moment with Maddie...but society tells me they would not want to be burdened with my child...I am told this on TV shows through early testing for Down syndrome....I am told by anonymous commenters that think my child should not be born because she has an extra chromosome...because the doctors and medical community have said that I should have terminate her...that rich people design there babies not to be like my baby...look at my header...is Maddie hideous...is she not someone you would want to be around...I think the answer would be no...and a BIG NO...she is the coolest person I have ever met...she is the most interesting person I have ever met...and to think she/we are unfortunate...to think if I would have taken the advice of the professionals...we would be a statistic...and the world would be unfortunate...
and this is where in the post I say...I love my Maddie and could not imagine life with out her...and that is true...very true...but I should not have to declare my love for my child in a hard truthful look at life with a child that no one but a Down syndrome mother could want...

cliche?

2012-01-26T11:56:00.000-08:00

“I just hope my baby is healthy”…what does that mean? Healthy is such a BIG word with so many meanings…does it mean not like Maddie? Does it mean with no heart issues…does it mean no chronic issue? Does it mean not a club foot? Does it mean premature? Does it mean not in the NICU? What does this statement mean…I used it…I said it…and now it just seems so cliché to me…cliché is my word of the week…I guess I am just done with the winter wind in Wyoming…not sure what but these days we can fix pretty much anything…and if the issue is not fixable…you learn to adjust…you learn to love it…to embrace it…to accept it…health issues are so there…they are like hang nail…they come and go…you can try to prevent them…you can fix them bandage them up…and sometimes they come back and then you treat them again…but hoping for a healthy baby is a waste of time…the baby is what the baby is…is that wrong? Maybe I am to jaded to see any of the hope…I just want a society that stops asking and yearning for a perceived perfection that is not there…it is in the eyes of the beholder…not society…Maddie is not a perfect kid to most people…but I learned that she is perfection to me…Maddie still makes me crazy, scared, hopeless, hopeful, angry, tired, and in a constant frame of worry…but it is what it is…when I think healthy…I think of Maddie…she is not dead! She is not sick…when I was in the hospital I received a breast feeding book…and all the babies were NICU babies…and I started to laugh and cry…this is my new normal…this is what perfection looks like…now when I see a baby with no tubes I think…wow no accessories what is wrong with this picture…when I see a baby with tubes I see a fighter…I see strength…I see hope…jaded…yep…but reality is my yearning for control…is no longer in my grasp…only that healthy means a lot of things to a lot of people…if I was pregnant I would probably say this phrase…because of course I want a healthy baby…but I would like to think I would say…I just hope my baby comes out alive and screaming…

special what?

2012-01-24T11:59:00.000-08:00

Special needs child…not sure when I missed that memo…but I did…last week I for the first time really took in and accepted that I, Kim have a special needs child…what the F#!*...really...not in a bad way just in “oh my” way…I do not see Maddie as special needs…I see her as Maddie…cute, funny, smart…full of 2ness…but not special needs…then I got thinking…what special needs are “they” talking about…and then it happened like a load bricks in my face…I watched Maddie struggle…I watched Maddie not understand at first and have to watch…something that she has done many times she had to process…recall…and then put into action…I watched for the first time that process thing that all the “experts” talked about…I remember reading somewhere that Maddie will have trouble with short term memory…processing “normally” what ever that means…that is what I thought…not my girl…she will be just fine…she will be able to do anything…and Maddie will be able to do anything…I realize now truly that it will take longer…the simple task she was having trouble with…head, shoulders, knees and toes…have done this a million and one times…and this time it was changed up a bit…I was not the one singing it…and Maddie was lost…she had to stand and process while the others were putting the song into action…she wanted to keep up…or maybe I wanted her to keep up…but I saw those wheels turning in her head…trying so hard to just get the moves out…and then the thumb went in the mouth other hand playing with her hair…and finally after a few minutes…she joined in…with a smile and giggle…I am not sure why it was hard for me to see and watch and not be able to fix…I realized with no amount of anything will change the fact that Maddie will do things at her pace…I know it was the same thing when she learned to sit up, crawl, walk, etc…but now I see how much she loves to live, smile and giggle that when she struggles I want to step in, fix and do for her…so I go back to the phrase and over used words “special needs” what is that? I have special needs we all do…why do we have to label Maddie…the word “special” is just not my favorite word…it is cliché…and I see it as a negative…so I did accept that I have a “special needs” child...I will only use that phrase for our advantage…isn’t that what it really is…a phrase tied to money and diagnosis…not to who Maddie really is…

oh brother!

2012-01-18T12:22:00.000-08:00

This is Maximus and he is 6 years old...being Maddie's BIG brother is no small task...but he has loved every minute of it...when we got to bring Maddie home from the hospital...he stared at her the entire 4 hours...he was 3 then almost 4 and he loved her from the moment he saw her...he has always had a connection with her...she adores him and looks for him always...we have always talked candidly with Max...he knows every thing...he knows and was there for her heart surgery and several of her dialations of the esophagus...at 6 years old he can tell you about Maddie and her choking...why it is the way it is...he also knows Maddie was born with Down syndrome...he has cried with me...he has hugged me...and he has told me everything will be just fine...

so the other day when he said that it was no fair that he did not have Down syndrome...I knew he meant it! and when he asked why they do not call it Up syndrome...since she has more chromosomes...I thought he was on to something...this guy will be the one looking out for Maddie the rest of her life...and he is ok with that...we could not have asked for a better BIG brother...

look at all the LOVE in our home! Maddie's first hickey...compliments of her BIG brother Max!

oh PoopS!

2012-01-15T14:08:00.000-08:00

Dear Maddox Rose,

This is a GREAT idea! certainly the next step in getting you ready for Pre School this summer! I love your enthusiasm to spend hours on the potty...wiping, flushing, relaxing...I even think the way you eat the toilet paper is tolerable...

But this is not so much...something I thought my princess would NEVER do...I thought you were dancing to your favorite song...but I was VERY wrong...

Maddie this is how I would like to see poop! in the potty! I know you can do it!

Love Mom

just better!

2012-01-08T09:32:00.000-08:00

3 years ago this month is when my world stopped...when life stopped being "normal"...and my fairytale life went somewhere never to be found again...when I realized that my life was not better then everyone elses...and that life is unpredictable as I saw my families to be...I always believed because my Mom watched over me since the age of 10 years old that nothing bad could happen...when the ultrasound revealed that Maddie was going to be born with Down syndrome...I realized that I was a statistic...today I am at ease to be that statistic...I am ok to have a child like Maddie...she has shown me what life can be...it is not safe...it is not content...and it is not easy...life is just one day at a time...sometimes one minute at a time...but then we get through the rough patch and I see that my life is as "normal" as yours...I am doing all the "mom" things I always dreamed of for me and my children...I have realized that life is as "normal" as I make it...that I cannot look at other people to understand or empathize with us...because to understand our world is to live in our world...and that is ok for them and it is ok for us...Maddie is back to her 3 therapies a week...and tumbling 1 a week...she rocked the songs and remembered all the moves! I had Maddie wear her glasses to class and she watched her teacher and mimicked every move! SuPErSTAR!
her big brother finally got into the school we have been waiting to get in and it is as great as I thought...very child centered and learning at the forefront not discipline...he goes to kindergarten 4 full days and 1/2 day on friday...he has choosen on those fridays to go to our local rec center for ice-skating, swimming and fun! Max also begins gymnastics this week and basketball...nothing intensive just fun and a good outlet for him! and also something he does not have to share with his sister! Maddie tends to get a lot of the attention...and then there is Chad...he is super busy with teaching...helping start a new High School...finishing up his 2nd masters and coaching robotics...so to say our life is different...it is not...it is just as busy...eventful...and just plain good!

we had sum fun...

2012-01-03T17:49:00.000-08:00

snow shoeing...very fun

Maddie still loving the backpack in the winter!

good family fun...

caught some air!

then a head plant...

Maddie pretending to be like Uncle Neo...

not ready for the pix! but still fun!

the rest of the story...

2012-01-01T08:52:00.000-08:00

Maddie is out of the hospital and surgery went smooth...as the ground hogs day continued...I looked at a nurse and thought where was my handbook...where is the outline and notes of what to do if something like this keeps happening...the doctors and nurses act as if I should know...but I dont...I seem to make the wrong decisions on a daily basis with my kids...it is not easier to raise a "normal" child...it is just different...it is just more routine...and it is similar to me...I can relate to Max and his issues...I have had strep throat, viruses, ear infections, etc...but I have never had a restricted airway...I have never acted like I was ok even though I was in pain or discomfort...this trip to the Denver ER was different then the past...it was clearly apparent that Maddie has a unique health situation and that no one has answers...no one knows the "right" thing to do...we have a "plan" now and in place and actually put in to motion...Maddie had her esophagus dilated with a balloon and will have a follow up esophagram in a couple of months here in Casper WY and the GI doctor will also come and discuss the next step in March so we can stay ahead of her esophagus closing...and cross our fingers no more rushed trips to Denver...I was so sad and scared on this trip...Maddie stopped breathing waking up gasping for air and at 4 am I took off to Denver..just me and my little girl...4+ hours later we arrived at the hospital...instead of going to the ER I went to the doctors office...I did not want to get lost in the system...I knew she/we would be ignored because she is considered low risk because she is breathing...I walked into the office building changed her and got her ready for a long day of poking and prodding...her surgeon that repaired her at birth and the office I call when I need assistance turned there back on us...told us they no longer could help her...we were on our own I literally turned around and there was Maddie's GI doctors office I walked in and asked for a esophagram...they turned me away and sent me to the ER...and again we were lost in the system...just what I was trying to avoid...the ER doctor came in and had no answers just that Maddie looked fine but sounded a little froggy...the GI doctor came in and said that nothing was seen on the xray and it looked like Maddie just had a respiratory issue that her lungs were "big" and wanted to bring a pulmonary doctor into see her...I said no...I demanded a swallow study...then as a parent you start second guessing yourself...have I wasted all this time and energy on a respiratory issue...but I knew when I could hear the stuck food...and she was crouched in the corner that I was right and I had to fight...the nurses, the ER doctor and the GI doctor said to me there is just nothing wrong with her...they said that she was just tired that it must be her nap time...like I did not know her...finally 3 hours later after we checked into the ER we went in for our swallow study...she swallowed the barium and began to choke and gasp on the table...I just looked at them and told them I was right...and that I was pissed...the GI doctor would not come talk with me...he had the ER doctor relay the message that we would have surgery that day...I said I would not talk with her anymore I wanted the GI surgeon to talk with me...no messages...he came in and said I guess you were right that she has a blocked airway and that she was stricturing...they would not be able to dilate her at that time...he said they needed to move fast because her airway was at risk...REALLY now you want to move fast...now you want to help...I can not explain the rage I feel when I am not taken at face value for what I know is happening...like this is my first time...they wanted to put an IV in Maddie right then -she had gone with out food and water for 12+ hours and now they wanted do this...when I asked for it earlier I was told no...I told them no they could wait till she was under anesthesia...at this point it was pointless to try she is dehydrated and has flaccid veins and they would not be able to get a good stick...they again said that they had a lot of years of experience and that they were very good at it with condescending smirks...I appeased and said I would only consent if they used a numbing agent...sure enough 20 minutes of them trying and not getting it they conceded that it could not be done with out hurting her...when will people listen to me...so Maddie was in surgery by 2:30 pm the doctor said this will only take a 1/2 hour at the most...2 hours later he came and saw me...he said it was a tighter and harder then he expected...why do they not listen...the dr came out and said she needs to be dilated asap and that the doctor could do it Tuesday it was Wednesday...really that does not work for us...I am done by this point...I began calling other pediatric GI doctors...getting second opinions...I am tired of fighting...I am tired of trying to tell them we can not afford to take off work...I cannot emotionally handle anymore of this...I began calling her GI doctors office every hour until he squeezed us into an appointment...and there Chad and I pleaded and discussed and explained the hardship of us coming to Denver like this...it is not good for anyone...he then somehow got us in to surgery Friday and she was dilated...so full circle we have a plan...I am still shaken by this event...I am still questioning the medical community that seems to have all the answers but do not let the parents in on that very important plan...TEF/EA will not go away...it does not seem to be as manageable as we had first thought...Maddie she is a rockstar...stronger then I could ever be...more patient then I could ever imagine...through this all Maddie reminded me to fight for her...to go with my mommy instincts...and that she is SOOOO worth it....so now I struggle with how do I resume "normal" life...how do I look at others and care about there lives and what is going on with them...how do I be a friend...I cant really...I am consumed with how to be a mom...I am consumed with how do I prevent my children from hurting...I do not bounce back like I used to...I do not get to high with the good news and I do not get to low with the bad news...I am like a robot...I do what I need to do to get through the day...it is successful when both my children are safe and healthy...I want the sense of "normalcy" back...I want to get up and not think of medications, doctors, appointments....I just want to wake up and think what am I going to wear today...

angry esophagus again ;(

2011-12-30T07:18:00.000-08:00

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...

2011-12-27T17:10:00.000-08:00

Ready Maddie?

Mom's not looking!

I do Mom!

No teasing Max!

Smiles

cannot get enough!

so Silly!

say bye bye...

2011-12-16T17:08:00.000-08:00

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...

2011-12-13T11:48:00.000-08:00

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...

2011-12-12T12:56:00.000-08:00

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!

2011-12-06T19:54:00.000-08:00

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...

2011-12-05T13:07:00.000-08:00

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...

2011-12-02T12:05:00.000-08:00

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...

2011-11-25T16:27:00.000-08:00

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...

2011-11-18T12:31:00.001-08:00

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...

2011-11-16T13:33:00.000-08:00

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...

2011-11-11T12:22:00.000-08:00

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

2011-11-04T12:37:00.000-07:00

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...

2011-11-01T18:08:00.000-07:00

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!