silly me...

21 things I thought were lost when I found out Maddie was going to be born with extra loves…

1.                  loving a baby doll and mothering her dollies

2.                  eating a dinosaur chicken nugget

3.                  potty training shenanigans

4.                  dancing and feeling the rhythm

5.                  watching her frolic in the mud with a pretty dress and no shoes

6.                  catching her stealing from the cookie jar

7.                  temper tantrums

8.                   a LOUD screeching voice

9.                  manipulative communication to get what she wants…when she wants

10.              imaginative play dress up, barbies, cars

11.              mimicking my every gesture with her hands, nuances in my speech to pacing on the phone

12.              loving flowers and the sun

13.              dare devilish antics – no fear

14.              wanting to learn and go to school

15.              remembering the little things…tumbling and showing her feet after a front roll

16.              grabbing me with all her mite to hug tight

17.              adoring her brother…always

18.              looking up at her Dad and just squealing with excitement every time she sees him

19.              pretending to be a puppy

20.              typical not listening and pushing boundaries

21.              Happy but opinionated…Alive and healthy

judgement...

Sometimes I feel like I am out on an island…not a sunny white sanded island…a island where it is full of trees all looking the same and nowhere to go or get out…on this 3 year journey of being Maddie’s mom the same things happen over and over again…and then I just get tired and annoyed with them…examples and what set this tirade to its tipping point…people writing the “r” word on facebook; standing in line at Bountiful Basket and hearing the volunteer use the term mentally disable and of course the upcoming IEP…since I have moved on from the initial shock of having extra chromosome loves…I have moved to the shock of ignorant people…when I hear or read someone use the “r” word….or a person who works with people with extra needs- say and use the phrase mentally disable…I do not like that phrase…it just makes me cringe…it makes me think… is that how someone would describe my Maddie…insert “r” word, “mr” word…or mentally disable…I would describe Maddie as mentally able and sufficient to contribute to society…or better yet not even refer to her brains but who she is a person…and then there is the fast approaching IEP meeting…that is a waste of my nerves….today Maddie was tested and sure enough the therapist concluded what I already know…Maddie is turning 36 months old and is at approximately a 18 to 24 months developmentally …yeah I know…I know…I am not so wrapped up into Maddie that I do not see her true milestones, skills and tasks in her tool belt…I told her therapist that I am officially not attending the IEP…not doing it…I am not sitting at a table and listening to something I can read for myself…alone…with wine, tissue, and on my own controlled terms…I know at this meeting they will tell me what they will provide and we will set goals…I know what they will provide it will be on the document that I have to sign to get services…this is a long process and I feel like I did in the beginning…no control…community child….with no end in sight…I know what to do when she is not getting what she needs…I speak up…not difficult…and if they do not take care of it…I will…Chad, Max and I will pick it up and teach…we will carry her and we will push her…we will hold her…it is our job to…and goals…Maddie’s goals are what she succeeds to master in this year…I am not sure were my anger, frustration, uneasiness are coming from…for goodness sakes it is pre school…with a side of therapy…two times a week…not her going away for a day or even a night…just 2 hours 2 times a week…but this feels big…this feels scary…and the sad thing is Maddie does not even know what is coming…we talk about it…but she does not know Mommy will not stay…so now I put Maddie into this world…where people refer to her as the “r” word or the mentally disable…I will hear things like it is my “calling” to work with people like Maddie…I hate that…I feel it is condescending to tell a anyone that it was there calling to work with my child…really do not do us any favors…because you get far more from just being in the presence of my Maddie then she will ever get from you…I know I will get used to Maddie being independent from me…and I know that she will love it…and I know she needs it…but this truly is easier said then done…I want to ride both sides of this fence…I want to receive therapy and assistance with Maddie…but I do not want a community child…I want help to raise her -on my terms…not on a standardized tests and money terms…I want Maddie to receive all the extra OT, PT, SP, reading one on one or in a group…but I want her included in a regular classroom and not segregated out….and I want her to play sports, participate in plays and walk in the graduation line because she earns it…not because she was born with extra and it looks good for them as a school….I want Maddie to live life to her fullest potential…I want her to be described as Maddox, Maddie or Mads…the nicest chica I know…exhale…

hippie...

Blonde curly hair and blue eyes…that is Max…he is choosing to wear his hair long these days and his hair is what I would call ultra cool…he also likes it…at the young age of 6 he is learning about standing out and being different enough to get noticed…he likes it…he likes the reaction he gets from people…and it is not always positive and kind…especially when it comes from older people set in there traditional ways…of boys have short hair and like the color blue…we raised Max to be an independent thinker…a child with strong will and an opinion…not always easy and I have questioned myself many times with this way of parenting…but as he has gotten older and is becoming comfortable in his own self…he is going to be just fine…today he went to school with his long blonde locks and toe shoes…I have to say he is what I dreamed of for a son…but my dream a few years ago were very different for him…I wanted him to be nice, popular, and athletic…and he is not that person…he is nice but not to nice I would describe him as cautious…he is not popular…he is just normal and not really wanting for more…he is happy by himself as in a crowd…he could be athletic but he has chosen to be academic and more of a rock climber type…a free thinker…he would much rather hike a mountain then play football…he would much rather learn something from the discovery channel then watch cartoons…if you ask him what his favorite show is it would be Dual Survivor, Infested, and Monster Bug Wars…he is a perfect brother for Maddie…at the park the other day when Maddie was having her surgery…a 10 or 11 year old girl called her brother the “r” word…we have talked to Max about this word…and he believes you should go to jail for saying it …he stood there…stared at her…Chad said he was frozen and spirit broken…and the brother of the girl said watch you language…Chad chimed in and said my daughter and his sister was born with Down syndrome….and that is not ok to say…she dropped her head and her color faded from her face and she apologized to Max…teachable moment for Max…and the other children…Max is called names for his long hair…referencing him to be a girl…he does not care much…but when it comes to his sister he does…it takes small instances to change people…I think that Max will have just as hard of a time in school with peer pressure and ignorance as Maddie will…Max is different then the rest…he is a lot like his dad…difficult at times and always wondering why and how come…Max will get lost in his own thoughts pondering the universe…Max will be out casted probably more then Maddie…why -because he chooses to have long hair and be a boy in Wyoming…because going to his Grandpa chicken farm or a museum is cooler then going to the  a water park…Max is a difficult child…but he is perfect to be Maddie’s big brother…he will know when to step in and protect her….and when to sit back and watch her learn for herself…Max is sensitive when it comes to Maddie…these surgeries and hospital stays have been stressful for him…he is the forgotten child…when people call they ask about Maddie and how is she doing…never thinking about the little free spirit that wants to fix it…I hope that in the coming years Chad and I give Max the tools to prepare him for life being Maddie’s big brother…it is so much responsibly that he did not ask for…but like when she was born…he will love her no matter what…

that mom...

Maddie had her surgery...it went well...she will be dilated again in 3 short weeks...so that really was not the interesting part of day...thankfully...we got there and I purposefully eat in the car while Maddie sleeps...when she wakes up all food and drink are hidden...I just don't think it is nice to eat and drink when she cant...and it saves a lot of tears when I have to say no...so we arrive at the surgical center and Maddie makes her grand entrance...greets everyone...we check in and it is nice that I have gotten to know the staff, nurses and even some of the other doctors...because Maddie is so stink'n likable and cute she really has a fan club...which does not help with her little look at me attitude...as Maddie listens to her ipad of music she dances and sings and is happy to oblige in small talk and smiles...Maddie was a rockstar helping put herself to sleep by holding the air mask...as she drifted away I felt ok with letting the doctor and nurses have her...I trust them -now...I like that feeling and it helps that they put on Maddie's favorite music and favorite smelling stuff to help her go to sleep...they just make it a positive experience...and that helps...more then ever! so I leave Maddie and go back to the waiting room...I have the ipad and I am ready to read and just quietly sit in peace...enter the scene...a young mother is sitting with her toddler...the child asks for a drink...she gives her some water in a sippy cup...she lets her drink -alot...the little girl wants more...and begins screaming for more...the mother sits and texts...not making eye contact with anyone in the room...at this time her child is screaming at the top of her lungs and throwing herself on the ground...never did she look up to do a I am sorry smile...she just texted...she never once responded or talked to her daughter...not consoling her -nothing...so the nurse comes out and now it is clear the little girl is the one having the surgery...and why she could not drink...so as they leave the room the mother tells the nurse that the little girl is "pissed off" at her...that she took away her sippy cup...of course the nurse says why did she have a sippy cup...did she drink...the mom lied and said a little...I am not sure why the mother did not just hide the sippy cup in the first place...never allowing the child to have it...now the child will throw up and be sick after anesthesia...but not sure this mother gets it...I really try not to judge...I think having Maddie has shown me that everyone judges and for the most part the judgment is misinformed and wrong...the thing here is that the mother set her child up for this...she gave in to the first drink...and in consequence there was a fit...and in further consequence a delay in the little girls surgery and now she has to go threw this again...the funny part was when she left the room the whole room began talking to her...before her we were strangers...after her we were buddies...everyone had an opinion...everyone had a solution...I was just thankful it was not me...mind you it has been me...but I am the parent profusely saying sorry...and giving courteous smiles...and promising my kid a kitchen sink and a new dog if they stop...but what scares me is the lack of response from the mother...that just texted...is that her coping mechanism...how did she get so lucky not to care what others think...how did she get the gene of screw you all I know what is best...all I could think is I bet she has the kid that goes to sleep at night by herself with out having to be rocked...and she is the mother that can just have a day off from mothering and not feeling guilty...sometimes I wish I could turn off my guilt...but then again I think I would be lost with out it...it is a good morality check...

share please...

Share…not something I am fond of…at all…sure I share my feelings, my opinions, my mood…but I do not share my food well, my things, or my family….I am not what you would call a good sharer…or a person that is willing to give and give…I only give my all to people I like…if I like you…I will give you my second favorite shirt…if I love you I will give you my everything…I will give you my time…but sharing is not something that comes easy to me…I will blame it on being the baby of the family…and making my brother share but not really me having to reciprocate…today it was phrased to me that it is exciting that Maddie is now going to be shared with others…I know what was meant by this…but it is funny how my mind races and I think…I don’t want to share Maddie…I don’t want her to love on others…I want her smiles all for me…I want to watch her learn, communicate and grow…myself…not sharing through others…it was hard when Max went off into the world of school…I felt the same way…I wanted to hear what he had to say…I wanted to see him play with others, teach and learn…I am unwilling to share Maddie…I feel like she is mine….and I just cannot get enough of her…not even in the throws of a fit…or when I cannot understand her…I think it goes back to the diagnosis…it was my diagnosis…my issue…the one that heard the words “we only have a short window till termination will not be an option”…I was the one that heard time and time again how they could not mother a child with Down syndrome…I was the one that heard that if it was them they would terminate…and I do admit I was the one that was not accepting of her being born with Down syndrome…but then you have this child born with an extra chromosome….and suddenly everyone loves her…everyone wants to be a part of her life and her accomplishments…it is fiercely aggravating that in the womb she is not wanted…and when she takes her first breath she is a rockstar…and now I am suppose to share…why? Did you carry this human and cry every day multiple times at the notion of what was growing inside you…nope…did your body ache and your heart break when she was born and had to have life saving surgery…nope…have you gone through every surgery since…nope…have you held her tight when someone thought it was appropriate to say the “r” word in front of her…nope…but really they did not mean it in “that” way…whatever…now I must share her…now I must be thankful society wants to be part of her life….she is a child that not many want; until they meet her…then they are still glad she is my responsibility….but they want her smiles, hugs, and cute moments in time…it seems unfair to me that with all my tears; all my pain…I now have to share her…outsiders only want the happy comfortable side of Maddie life…I get that this is the part of parenthood I was not expecting or even thought about…most people want to show off there children…look how cute they are….listen to there huge vocabulary…I never did this with Maddie…in the beginning I hid her from the world…now I ignore the world….and now I have to share her…I hate it…I know selfish….I know not a pretty light….but it is what it is…and sharing is not my strong suit…

"fit" fun...

just follow me! already...

Do you not just love anonymous…do you not just love people who comment anonymously…I do…I think it is hilarious when giving an opinion; and that opinion is obviously not of a person that has a child with a “special” ability…I am thankful they read my blog…and I even like that they take the time to comment…what I am not a fan of…the just roll with it approach…the just get over it line of thinking….and the just be thankful your daughter is able to be in the society in which we live…I read every comment…I take every comment and think about them…learn from them…gain understanding and a sense of reassurance…I even find peace in comments…to find others are living like me…that others think like me…that others are and have walked in the shoes I am so desperately trying to slow down…anonymous just needs to sign in…so we can have a conversation…about everything…and as for the doctor comparing my little girl to others…no he does not…not one doctor has compared Maddie…they always tell me Maddie is perfect for Maddie…it is the uneducated that compare my daughter…my daughter will not necessarily need assistance in school…she just may talk like she walked…and she may do math like she manipulates me…I do not know yet what my baby will need or do…that is the frustration of most…only time will tell if she is what the lame folk call a high functioning person with Ds…schools do NOT just provide what my child may need…that is a false hope that many believe that are not a mother of a extra ability child…the school will provide what they deem necessary and prudent to my child…based on the standardized test they will give her…and yes because of her diagnosis money will always be tied to Maddie in her education…punishment…no I love taking tests with strangers that talk down to me…with soft, fake, condescending voices I am sure Maddie wont mind either…she is just a child….right? and a child with Ds….so what will she know! Punishment … Nah…never forget when reading about a mothers journey…we are fickle at times…smiles

and so it begins...

Maddie is fast approaching her 3^rd birthday…with this of course there is party planning…but there is also transition…yes transition -can be good…needed…but obviously it comes with things that are not fun…irritating…changing of therapists…yuck! I am not happy about this…not one bit…but it is what it is…and so we move on…testing…standardized testing…hate those two words…especially when it comes to my Maddie…we are beginning to start testing to see where Maddie is at…REALLY I already know where she is at…and I know where she should be…so lets skip that meeting that tells me all the things I do not want to be reminded of…and then expect me to be thankful and positive…not that I am not thankful…but I am human and it gets to me when someone tells me that Maddie is testing at a 18 month age level and she is 36 months…sigh…and sigh again…when we were discussing dates, times and expectations of her new therapist and beginning preschool…I had a realization…a moment of clarity of sorts…I was talking about how it was Down Syndrome Awareness’s day and we were celebrating…and they did not know about it…WHAT!…it is almost the biggest day of the year and when you advocate for this cause you should know the day! 3/21 is a BIT obvious…(and for those who do not know 3 chromosomes 21^st chromosome =Ds) then I was mentioning testing and the lawsuit in WA…they knew nothing! Never heard of it…mind you one of these people is a mother of a child born with Ds…so I assumed she gets it! but no…then I realized that my world that I hold so close to my heart…is not everyone else’s…so for them to see the beauty in Ds comes from only my daughters looks…her attitude…what they feel when they interact with her…but “most” people I do not think want to feel the whole picture of living with a person with Ds…they want the instant stereo type that is projected from Maddie…cute, happy, doll like, quiet, -the perfect child…but this is not Maddie…but it is her in a snippet of time…and that is what standardized IEP testing does…they put a person in a little box…with a pretty bow and call it good…not quite capturing the whole child…or the whole package…so I wonder if I am a no show to the IEP meeting if they will think I am a bad parent that does not care…I am not…I just find it pointless…they asked me a ton of questions about Maddie and asked what my expectations of school were…I told them for her to have a positive educational experience and be school ready…what more can I ask…I am still her parent and her first teacher…Maddie is great because of who we have surrounded her with…little teachers run through my house everyday with her…teaching her life long skills that cannot be taught by an adult…I am going to miss watching her every second of the day…I am going to miss seeing her light bulb moments and having someone maybe -hopefully writing them in a folder for me to share…I am going to miss Maddie when she is at school…I know that it is the best thing for her…I know that it will be great and so will she…but I will still miss her…and I will still wonder what she is up to and if she is good…I feel like I blinked and she is almost 3! WoWsA!

that Maddie...

This morning Maddie decided she was going to watch old videos of herself…so sweet and cute she (is) was…there was one of her cooing and batting at her mobile…I remember that being such a huge milestone…and how it was then I began to enjoy the BIG things to us…we also watched a video of her eating by herself…it was jello and a mess and everywhere…not much has changed from a year ago…she is still making a huge mess and her food is still the texture of jello! But really I could not believe is how much she has changed into a toddler…a child…not a baby…she is not little anymore…sure she is in comparison to others…she weights roughly 25 pounds and dropping…and she is about 31 inches tall…so petite!  But full of spit fire…she is not very nice right now…everything is not fast enough for her liking and the pecs program and sign language is just not fast enough…she is a temper tantrum in waiting…at any moment she explodes into a screech and throwing herself down with one eye open to see who is watching…she has just started this bah bah bah cry that is very funny…but I have to not laugh…Maddie is picking up that everything she does I think is cute or funny…and she is using it to her advantage…when others see this behavior I get the isn’t this great look she is just like a “normal” child…yes she is like that “normal” child and then they turn 5 and the tantrum is not so cute anymore! I have learned through my 6 year old that you try very hard to squash the unwanted behaviors quick because they will haunt you don’t…Maddie is just pissed all the time…I know she is hungry…and I know she is having trouble eating and drinking…I am not sure if it has turned into a aversion to food…that she is turning 3 soon…her  “new” personality…or her esophagus is just that irritated…but what ever it is I would love to have the age old cliché -kiddos with Down syndrome are ALWAYS happy! referring to my Maddie…

witness...

“Side” “side”…one year old little boy says to Maddie…Maddie responds in her words and they go outside…he opens the door and shuts the door for her…she says thank you…and smiles…this was a great interaction to witness…Maddie being loved…I am not sure I understood this before I had Maddie…hard to explain…but Maddie is protected naturally by other children…I do not think they see her as “different” I think others like her happy and infectious personality…I see it most times when we are out and about…other children flock to her…and slowly this has taught me about loving Maddie…being thankful for Maddie…with Max it has always been expected…with Maddie it has been expected but it has been more of an unknown to see others reaction to her…to see if the world will accept her for her…Maddie is a “wanted” life…and I think that makes the difference in how others perceive Maddie…if I am ok with Down syndrome…they are…if I am ok with her angry esophagus…others are to…apprehension and stereo types come from me and how I present Maddie to the world…I think this is a very important job and one that will take a lifetime…Maddie is not a blessing…she is just how she is suppose to be…Maddie was not sent here to make me a better person or that I am a “special” parent…no Maddie is here because when the doctor asked me to terminate her…I said no…I was not sure of my decision on that lonely day…but today it was the best decision I have ever made…no regrets…no looking back…no what ifs…just a lifelong journey of happy moments witnessed by me…lucky girl!

band aids...

Maddie left the hospital late Saturday afternoon…still not eating or drinking…the doctor realized she was on strike and nothing they were going to do was going to help the situation…so we went home with no feeding tube…but a GI reader that tells us how much acid reflux Maddie is experiencing…she wore that till yesterday and we should have some results early next week…Maddie got in the car and asked her brother for some food and drink…he happily agreed and we were on our way home…she is on another medication to help with the healing of her esophagus…it serves as a band-aid of sorts for her very tender tube! The result of this episode is that Maddie will have dilatations every 3 to 4 weeks…no matter what…so that means a long drive for her and me…and one very unhappy girl! She is eating slowly and very cautiously…and her spirit is a bit broken…she gave me the silent treatment until today when she realized life was trying to get back to “normal’…I do not blame her…but it does hurt…that she associates me with this…because I am the one that puts her to sleep and I am the one that is there when she awakes…little comfort when there is no other options…I do not want the hospital to be as familiar as it is…I hate that I know my way and I know faces…I hate the smells and I hate the flitting reality that they do not live with this…we do…that this is a members only club that is very lonely…Maddie is on mashed soft foods for the near future…so things have not gotten “better” just more of no other options…the doctors and surgeons conferenced about Maddie and felt this was the “best” decision…one that we agreed with…how can we do nothing and have her esophagus close completely…how can we go with any other option? When there is nothing to be done…our hope is that doing this aggressive dilatation regiment will break the strictures spirit and stay open…this is what we have hope…nothing more…that is hard when I like stats an facts…but to this point the only thing I have learned is that an esophagus can get angry and have a mind of its own…who knew

hiccup...:(

when I awoke with Maddie in bed thursday morning I was full of hope...that today was the day that her issues with choking and not being able to eat solid foods would be over...she was snuggled in so tight to me...Maddie in the morning understood that today was different and that she was not going on the adventure she was hearing her brother talk about...she had not ate in a couple of days and took a few sips of chocolate milk shake the night before...I splurged and went to my favorite place to get coffee it is close to the hospital and it was as perfect as I remember..usually Maddie and I would share...but she was not having anything to do with food at this point...we checked in and everything seemed as normal as usual..familiar faces, smells, areas...nothing out of the ordinary...she had surgery to place the stent at 1 pm and was out of surgery at 2 pm...the doctor explained he was hopeful...he said the tighting of the esophagus was up towards the top more then he thought...but we would know within 24 hours if the stent worked...mind you this is a last ditch effort almost to help her esophagus open...otherwise we are runing out of "good" options...the nurses came to get me...I could tell by her face that it was not good...and I heard Maddie whimpering like I did when she was in the NICU from down the hall...and she was not ok...Maddie was out of it she did not acknowledge me which is off...she was coughing, throwing up and just not ok...I sat with her for 2 hours in the pacu and nothing was better...the nurses kept assuring me that this was "normal"...we made it to the peds floor...and Max and Chad were there to see how the Maddie was doing...she had no response to them...no response to her dollies...Maddie was just not right...the throwing up continued for the next few hours...it was changing colors...it was smelling different...and she was still limp...and then things started happening that never happen when I ask them to...doctors were moving, esophagrams were done with in minutes and the doctor was here...esophgram showed that her esophgus at the bottom of the stent had tightened...at 7 pm last night the stent was removed...it had moved and her body was rejecting it...our hopes of an open esophagus are gone...we are back to square one...and Maddie is pissed...not eating or drinking still...and as a family we have no answers...her esophagus closed in 1 week...we live 5 hours from her doctors...what are we going to do...currently she received a feeding tube...the last thing I wanted...and I hope today it will be removed...but I am not sure that is the best idea to advocate for...at least I know she is getting nourishment...we are at a loss...with no answers really in the future...but today is a new day and maybe the doctor had a bright idea last night....

stint time...

high ho high ho off to Denver we go...again...one week from the day...Maddie will have surgery to place a stint in her esophagus...lets just say the balloon dilation and botox did not take! when we returned from Denver last week Maddie did not return to her "normal" eating routine...she resumed basically how we left off...greek yogurt...not even her favorite cheetos and vegi stix...now she is down to juice or water and no milk...nothing thick...her esophagram today showed a VERY tight stricture with not much room for her to sustain...her esophagus looks like a sand timer hour glass thingy...very narrow...there is a sense of relief with this surgery...there will be a semi permanent meshed tube that holds her esophagus open...that is a sense of safety for her and eating...it has been a more then stressful event every time Maddie opens her mouth to put anything in it since she was born...the only down side to this procedure is that we will stay the night in the hospital...and there is a possibility that the stint will not work with her...if she does not return to "normal" they will remove it and we will be looking at another surgery on her esophagus...maybe while she is in the surgical room I will write a how to book for a new parent of a child born with TEF/EA...and make sure to tell them that this is not the "best of worst" like we were told...it is just what it is...aggravating, scary, stressful, time consuming, hard to watch, overwhelming, no control, and most important --worth it...all of it

wonder ponder...

there are many times I let my mind wonder...and it scares me...other times it is surprisingly delicious and satisfying...in the mornings when Maddie wakes up she enters the day with a phone call...she places her hand over her ear and begins to talk and have a conversation with someone...there are ooohhh''s and lots of gibberish....when I get her she always pushes back to see my face and my smile...she says good and then hugs and kisses me...everyday it is the same...I look forward to it every morning...this morning she began playing with her dolls...she lined them up and read them a story...she tucked them in with a blanket...she hugged them and then I realized she did the same thing she does to me...she looked them in the eyes said good and hugged and kissed them...when Maddie was younger I always wondered if she would play the same with dolls as I did...and she does...it is a very comforting feeling and sense of "normalcy"...then my mind wondered to a commercial...a mother and a pregnant daughter...and then the sadness comes...this is a question that I have thought about a lot and I do not know a good or correct answer for us as a family...will Maddie want to have kids? and if so will we allow her...WOW...how do we make this decision...is it a decision that Maddie will make or is it a decision that we make...will she someday watch her child play or will I be raising that child...this is a very uncomfortable subject...one that I am asked not to discuss in "real life"...I am shut down by friends and doctors when I bring this up...I just want to be prepared...I want to understand Maddie...I encourage her to be anything...and she in turn emulates my every move...so why would wanting to be a mother be any different...

Esophagogastroduodenoscopy...

Maddie's surgery went smooth...I am not sure I have seen a longer word; Esophagogastroduodenoscopy is the procedure that was done...in short her esophagus was dilated and we will see how it holds!

pre op...n cute

been here...done this...

can I go back to sleep...

this is what I think about the whole thing!

protect...

“it is no big deal”…”it is quick”…”it is outpatient; so really it is not that serious of a surgery”…and I agree with all those phrases when it is NOT my child…these phrases piss me off…they are inconsiderate and well just insensitive…I am the type of mama that gets uptight about anything from routine shots and wellness checks to surgery…I just get wound up and think of everything that could happen…WHY…because it did happen…so to think anything is routine is ridiculous…and not a fun way to live but it is reality…I am thankful when we see the doctor and there is no serious conversation…no further testing…no follow ups…I like when they say see you in a year…heck I will take see you in 6 months…I think the older Maddie gets the more I love her…the more protective I am of her…I have completely fallen head of heels in love with my child…and I have put my guard down with her…in the beginning when I just had her I did not think she would live…I was not in love with her…I was guarded and I put up my shield to protect myself from the pain I knew was happening and could happen…but now there is no turning back…I dread the part that I have to give her to the doctors…I hate the part where they put her under and the life in her eyes die…I hate the feeling of walking out the door with out her…no longer protecting her…no longer holding her…I always look forward to being there when she comes to…and she sees me and lunges for me and I hold her so tight…her smell the sound of her suckling her thumb…and the relief that rushes through my whole body…and it is time to start eating so we can go home…I know this is something I have to get used to…this is our new “normal”…I know that this will be repeated every couple months for awhile…so it is time for me to just buck up!

again esophagus!

Maddie has a little wiggle in her hurried walk…her butt swings from side to side so effortlessly…and so darn fun I can not get enough of it…she bounces as she runs and her giggle and hard loud laugh fill our home…it is hard not to smile when you around her…she loves her friends and she loves her brother even more…Maddie does not accept the word “no” and redirection is not taken lightly with her…Maddie is just that Maddie…with her crooked smile and glasses…she is my girl…Maddie’s esophagus is closing again…more then 50% already and surgery is for Wednesday the 29^th of February one year to the day of when this whole closing of her esophagus began. I do not know much more then I did the first time it happened but I do know that it begins to close every 3 months or so and with that comes anesthesia, shots, doctors, hospitals, and objects being shoved down her esophagus in hopes that someday it will stay open. Maddie is a pro at this whole process…she can tell me it is closing by pointing to her throat, not excepting any food that cannot easily go down and by arching to her right side…Maddie is doing great only eating yogurt, cheese, soft noodles, soggy chocolate cheerios, ice cream and puffy cheetos…and I am glad we are starting to manage this instead being held hostage to her choking…

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...