mini me...

“you know I don’t want a baby like yours”…yeah someone said it! to me…offensive as this sounds…it was not…I just shook my head and rolled my eyes…for sometime now I have been struggling with bigger issues…my ego…who am I, where do I fit in…when Maddie was born I tried to grasp and cling to people I could trust…people who had been a part of my pre-Maddie life…when I became a mother for the first time…I was so proud of myself…I thought I could do anything…I help create this beautiful person…Max has been handsome since the day he was born…a great physique, smile, long eye lashes…perfect health…and now that he is older he is smart, funny, likable…and a great big brother…I have always looked at him and thought…how great I was because of him…I helped create him…I helped raise him…he was a product of me…when he misbehaves I internalize this and wonder what I did wrong in parenting him…becoming a mother consumed me and I began to identify with only being a mom…so when I had Maddie…my ego was gone…I created--no longer was there a –we- created…it was a me issue…I created a person I could not understand…that I could not empathize with…someone I could not look at and identify with … this is not a mini me…I felt I did something wrong and was less of a women...I have always wanted a little girl just like the little girl I was…precocious, naughty, cute, funny, full of drama and wit…and then I had Maddie…all these things I just thought would never come to fruition…I remember thinking to myself…I will never be fulfilled or challenged in parenting Maddie…because she will always be sweet, kind, nice, well behaved, she will just sit there and look like she has Down syndrome…as ruthless as this sounds…it was my truth…and the voice in my head…I have had some time to think lately…to gather some perspective on my misconceptions of mothering Maddie…for a lack of a better words…I was wrong…dead wrong…Maddie has and is the most precocious child I have ever met…she is not what I would call nice…I would not call her happy…I would call her impatient…I would call her annoyed at my existence on a regular basis…she is 3 and already I get on her last nerve…as she grunts at me and stomps her foot…with a turn of a hip and head and a eye roll to top off her utter disbelief that I have told her no or tried to help her…Maddie is a mini me…but better…she can make grown men weep and talk like a baby…she makes old women squeal…and she has captured the hearts of almost every person that has come in contact with…she is not forgettable…or just a person born with Down syndrome…so the other day when we were at the Doctor…the nurse was asking questions and getting annoyed with me and Maddie…neither one of us was giving her much attention...I was not in the mood…everything is in her chart…just read it and you will understand! and then she asked “how is she doing?” I know a pretty standard question…but one that pisses me off…how is Maddie doing? I asked again…then followed up the question with --in what context are you referring to? her health and if so what part of her heath? heart, esophagus, thyroid, acid reflux, etc..her development? physical, social, emotional…what is --how is she doing mean it is a very loaded question…they want me to say fine…but fine is not good enough or it really does not tell the story of Maddie…with the nurse not liking me questioning her…she asked if I was even her mother…now that question pissed me off…that question offended me…because I get being scared that you can not cut it as a mother to Maddie and wanting to “try” to prevent "it"…but to be asked the question if I am her mother…as I am holding her in my arms…that is when I call foul…that is when mama bear rises…Maddie is a mini me…she talks like me...she walks like me…she looks like me...and she is comfortable with me...we are inseparable...if anything Maddie is the best thing I have ever done in my life…and to question me as her mother is just offensive…and it is with out question inappropriate...I wanted to ask her why she would ask such a question...but once again you can not fix stupid…

Beyonce WhOOOO???

another first...

well well well...I guess I survived the first day of BIG girl pre-school...and so did the Maddie...

uni-brow...

there is always a question on if you should ask a VERY shallow self serving question...should you be that mom...should you be that vain in public--out loud...should you say this...should you ask that...well...I did...I was that mom...Maddie had her dilation Friday...I have become very comfortable with the doctors, nurses, anesthesia, check in attendants/specialists, and cna's...they know Maddie; she knows them; I know them...we talk family, life, and shop...they call her by name without hesitation...fill her charts without question...it has become so routine...and "normal"...and then I did it...I asked...Chad mentioned that Maddie was developing a uni-brow...and Maddie is starting pre school Wednesday...so I told him...I was going to ask my favorite nurse to pluck while she was under general anesthesia...or if I could pluck...what I did not expect was that I would have to get clearance from the doctor and anesthesiologist...so I did it anyway...the nurse understood my annoyance of the uni-brow and the trepidation of plucking while she was all squirmy wormy...and she said YES! and laughed...I asked the doctor and he said yes and asked if I wanted to throw in a pedi...and anesthesiologist said he would paint her nails to match her toes...so all in all it was a win of a day...Maddie got her eye brows did...the staff got a laugh and I got out of the torture of plucking them myself...oh yes and Maddie's esophagus is staying where it should so we are officially off the every 3 week rotation and are going to a 2 month esophagram here in Casper....and yes I have officially become that mom! toddlers and tiara her we come!

shaving cream funnzzo...WW

much to much...

Last place…not a big deal I suppose…but as Maddie plays tag I feel all sorts of emotions…happiness that she is working on running…excitement that she is trying her darn-d-est…gratitude because she is playing with other kiddos and laughing…but then deep down there is sadness…that Maddie will be last most of the time…it is just realistic…it is just the truth in my eyes…yeah you can say this, that or another thing to try to make me feel better…but the reality is…some may even say…who cares…at least she is happy and healthy…yeah that is always great until it is your child…we have track day around here…where the kiddos enjoy a day of track competitions…and recently a couple parents commented how fast there child was…”2 first places”…like it really meant something…but does it? I guess it does when your kid is the fastest…as I rolled my eyes and thought it is a track day…really who cares…I do; I care…I hate when my kids are not first, well liked, forgotten…Chad would say oh Kim get over it…who cares…I am not thinking that being first is what bothers me…it is that Maddie is different…that she runs different…that she carries her self different…when people see her they smile…and they say ooohhhh with a side head nod…why…how can they tell that Maddie was born with Down syndrome…Maddie looks just like she is suppose to look…and she is just how she is suppose to be…but still she is different…her delays are so in my face right know it is almost unnerving…to be with her all day and with other kids her same age is just to much at times…it would be nice to just live in a Maddie bubble…where only us as a family lived…with no comparisons…with no comments from outsiders…with no looks of opinion from others…I just want to see Maddie for Maddie…but I cant…I see her with other kiddos…and I see her impulse control lacking…I see that she is behind age appropriate behaviors, play, communication, motor skills…school will not fix this…it will help…but I just want her to say Mom…I just want her to tell me what she is thinking…I just want her to understand what I am trying to teach her…the reality of being Maddie’s mom is that I have to be more patient then I have ever thought of being…more consistent and not such a free spirit…somedays I think all I can so is love her and kiss her…and to hell with the teaching…

until...

What if “it” is not enough…”it” is therapy, play, interaction, tumbling, purposeful everything….what if I am so greedy with Maddie that she is not getting everything she could possibly need…what if I look back when she is 6 years old and know that I have not done enough to prepare her for school; for life…and now all my intuitions of pre birth Maddie were wrong and have failed me…all my assumptions were wrong…my Maddie will not be this way or that way…she will never be a “typical” Down syndrome person…somehow my Maddie will be different…she will go beyond expectations and prove all wrong on what we read or hear…and there in lies the problem…Maddie is not typical to common assumptions about Ds children…she is very good at everything she tries to do… Chad and I were told that more is better when it comes to Maddie…more repetitions with everything is just better…this is hard to understand when I have always been told to raise Maddie like I raised Max…so that is all good and very appropriate until it is not…and then more is expected…more is what Maddie will need…more of what you ask…more of everything…can you narrow it down…well I can…but it is so tedious so ridiculous that it is down right frustrating…again she will learn like Max until she does not…Maddie is set on the potty everyday to pee…and everyday she sits there…she smiles, she talks, she is just so proud of herself…then take her off the potty…pee on the floor…how many reps…more…tumbling class…it has taken her all year…every Thursday at 530 pm to get the moves that she has been taught this entire school year…and still she needs more…so when thinking about Maddie and therapy and school…I hated the thought even made myself sick over sending Maddie to school…then I agreed to 2 days per week…and then we are told she needs more…more days…more repetitions…I knew this going into being Maddie’s mom that she would need more…but I thought she would be different…I thought she would be like Max….but she is not…so Maddie is great until she is not…she needs more…until she does not…Maddie masters things in an awkward round about kind of way…Maddie walks…just not steady…Maddie dances….just not steady….Maddie runs….just not steady….Maddie talks…just not legible to all…Maddie can draw, paint, color…just not for a long duration of time…Maddie can drive a "play" car…just not safe…Maddie can climb…just not get climb down….Maddie can anticipate the next step…just not consistently….Maddie can do everything you can do…just until she does not…so with all the worries…with all the what if’s and mores…Maddie will attend school 4 days a week…and I will continue to think I can use mothers intuition to raise Maddie…until I cant…

I can eat...

Dilatations (stretching of esophagus) are working!! nachos anyone! and lets not forget she is getting the hang of chewing! what a BIG girl...

culture...

“They have culture”…what is culture…is it better then the culture I was born into…who’s culture is “right”, “just”, “fair”…I see culture being the world you grew up in and what you are accustom to…who is to say your culture is right or wrong…if a different nationality has a different culture…is it “better”…is it “right”…no I am not sure it is…in that so called culture I ask is my child deemed not worthy, unfit…is my child put away, shunned in a house away from society…and sitting in my living room looking at my child do you think that is ok…do really think that my child is not worth it…that my child is not worth the grief that people associate with having a child with extra abilities…the conversation began with wow you sure have a lot of kids in your daycare now…I respond yes I have to pay medical bills…oh yeah I did not realize you have to pay for them…yes her last stay in the hospital was $50,000 and every three week it is up towards $18,000 to have her esophagus dilated…so yeah we have some bills…insurance helps…but it does not pay it all…oh I guess you wish you lived in Japan…why I ask…because it would only be $15…I respond I bet they would not deem my child worthy of that kind of health care…I do not know that for sure…something I will be looking into because I am curious…he responds they do better now…they live together in a home…I look cross at him…so they do not think my child is worthy…he responds…well they have culture…no -they have hatred…they have ignorance…they have a culture based on only the fittest are worthy…thankful I live in America….he responds well its not like the Ukraine…I respond no maybe not but that is why we have to help the children get out…so they do not have a death sentence to a bed…they know…these children have a mind that works…and after this encounter…I ask myself is that what society thinks of my child…because she is expensive and there is an unknown on how she will develop that I should have her kept away…I should have killed her…it is heart wrenching to think that there is a population of people that do not deem my child’s life worth living…my child who will not become a menace to society…that will not be a drain on there taxes…my child is paid for…by us…instead of saving for our retirement we are saving for our child to live…I just do not get how anyone can look at my child and think she would not be worth it…that she would not be worth time, money, love, and a decent chance at life…why does a extra chromosome make a person cringe…why does a extra chromosome make a person think the worst and thankful they are not in my shoes…I get that a diagnosis can be tough…I lived it…but in the end it was and is the best choice I have ever made…keeping Maddie is by far my greatest accomplishment…anyone can mother a child everyone wants…only a few have the courage to love the unwanted…

triple...

In her pink princess dress….Maddie blew out her candles on her 3^rd birthday…it was a small celebration of just me, Chad and Max…quiet, simple and perfect for Maddie...it was a lucky year it was on mother’s day and I think I could have not asked for a better gift…but as the day went I could not help but think and remember her birth…and how I have not forgotten one minute of that day…that journey…even though I am at peace with Maddie and Ds…I am still in a blurry shock that I am her mother…I love her and I am so proud of her…but I still think of that day…I think of all the preparation that went into that day…the pills to stop labor, the draining of amniotic fluid monthly…all the doctors visits…the oh I am so sorry…I think that was to prepare me for this…living day to day with Maddie…I do not feel like I was thrown into Maddie’s health issues…I was prepared with everything that happened during our pregnancy…yesterday we hiked the bridle trail…giving me a couple hours to remember…looking at my watch and thinking this was when she was born…this was when they took her from me…this was when she had surgery…this was when I realized that I was scared….this was when I wanted her to live and I wanted to get to know her…and at 11 pm last night I remember that this was when I got to see her again…in the NICU…this is when I was told not to touch her…the tubes, the sounds, the smells, the dark rooms…what an awful but necessary place…birthdays are wonderful in the sense I get to be thankful I get to celebrate them with my live Maddie…but it does not take away the yearning to remember…to look back and be amazed at what we have accomplished…Maddie is better today then she was yesterday and she just keeps getting stronger, smarter, happier, naughtier…we celebrate Maddie everyday…I know that this life is fleeting…with that comes hope that I will get to see her run…and will hear say mom…little things I have taken for granted is what I yearn for today…Maddie is amazing to me…so it was a first yesterday…Maddie blowing her candles by herself…and this year I hope there are many more to come….

just...

Sorting out my brain can be tricky…I do not want to say I am over worrying about Down syndrome…or overwhelmed about being a mommy to Maddie…as we have slipped in to our “normal” life…subtle reminders remind me that we are a tad different then the average family…it is fine…we are all adjusting…our “normal” consists of 3 week rotations to Denver (8 hrs of driving) for surgery for Maddie…normal? safe? tolerable? I suppose…it is what it is and there is no end in sight so it is our new “normal” and something that has to be done…IEP meetings for a 3 year old…fun? exciting? hopeful? Not really…but it is our “normal” and something that has to be done…I am not complaining…it is just different then I imagined it to be…I thought I would feel more inner turmoil…but I do not…I thought I would be sad and frustrated…but I am not…I am just numb to it…because some things have to be done…Maddie’s big birthday is coming on Sunday…again I reflect back…I feel pain, shame, self doubt…am I doing enough for Maddie…would of, could of, and should of creep into my mind minute by minute…but I am confused by the peace I find in our “normal” daily life…what has me thrown for a loop is how I envisioned Maddie when she was born…I never in my wildest dreams thought she would be who she is…I never expected her to look like she does…I never thought she would be so ornery and naughty…I never thought she would be a pint sized bully…I never thought she would not be talking in coherent words….I never thought she would be so darn animated…Maddie is not the child I thought I would have…she is better…simply put Maddie is just better…she makes me smile everyday…out of frustration…out of gratitude…out of reminding me what is really important…and what is not…Maddie in not making me a better person…she is not making think life is better because I have Down syndrome in my life…no I am a better person…because I have a happy healthy family…Down syndrome...has become just an extra chromosome…not our definition of Maddie