Saturday, January 28, 2012

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...

Thursday, January 26, 2012

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…

Tuesday, January 24, 2012

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…

Wednesday, January 18, 2012

oh brother!

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!

Sunday, January 15, 2012

oh PoopS!

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

Sunday, January 8, 2012

just better!

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!

Tuesday, January 3, 2012

we had sum fun...

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!

Sunday, January 1, 2012

the rest of the story...

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...