unrecognizable

as I go along with my life...it is somewhat in a daze...since I have gotten older and become a mother...I look at myself and wonder who am I...constantly reevaluating...who do I want to model for my children...I am a outspoken person that at times turns people off...so when I had Max I tried not to get testy with people...I want him to treat people nice...sometimes in the car I will cuss and talk to myself and he will ask why I am getting upset...I try to explain to him and I sound so dumb when I try to rationalize it with him...then I had Maddie...and I became completely unrecognizable to myself...everything I was comfortable with was gone...everything that I knew to be truth was shattered...and as the years have passed...the normalcy I once looked for I no longer want...I do not want to go back to the person I was...so with that...the friendships and relationships that died through my tough times with being Maddie's mom I have now accepted and I have let go...I am not the bubbly person that thinks positive...I am the mom that gets life is not fair...and that we will do our best...this is not a personality people like or flock to...this is something I have had to get used to...so do I be the person others want...or do I be the person I am...and it has not been easy...recently I turned on my charm at a party...and found I still have the charisma that people used to like in me...but it was fake...how is it some just get what is given to them and is easy going about it...and then there are people like me that struggle with it...is it the constant medical issues with Maddie that reminds me that I cannot put my guard down because that is when something happens...or is that I cannot give it to someone else to burden...I have accepted my new role in this life...but the change is still hard and unknown...

TO MUCH TALK

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...

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!

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U give Ds a Bad Name...

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?

“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?

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…