Monday, December 9, 2013

One week...

One long week...Maddie can be challenging at times...in a way I have never experienced...the things she does are just different and so unexpected...Chad has been gone all week traveling and it seems that when he is away is the time she really out does herself for mischief...on Tuesday Maddie decided to hand me her poop at 3 am in morning...was not expecting this not all...she has been refusing to poop on the potty and will only poop squatted...not sure if it makes it easier or it is just a Maddie thing...so we say let's go get cleaned up after the transfer of poop from her hand to mine...putting the poop in its real home the toilet, the clothes go in the washing machine, then washing the hands and finally checking to make sure there is no more lost turds...I know I am living the dream...so this morning I went to begin some laundry and found turds in the washing machine...i suppose she was just getting clean...right! On Wednesday I woke up to Maddie screaming and banging on her bedroom door...she locked it...she was locked in her room at 6 am in the morning and I tried  to remain calm...i tried to knock it down with a good shoulder push but ended up using a hatchet to make a hole in the door and unlock the door...I was saving her...right...yes -after I was thinking correctly I am sure I could have gotten it unlocked without drastic measures...but I was saving my princess...and it was 6 am in morning....on Thursday I received the dreaded email that they have had the worst week ever with Maddie at school...that she has been taking toys from friends hands and running away...yes this is the stage that Maddie is in...she likes to take and then giggle and have you chase her...I get that she can't do this...so I talked with her about it...and I have been dealing with this at home for awhile now...but it is a stage all children go through...but I am not sure it constitutes to the worst week ever...I think if other children understood Maddie and what she was saying and playing they could be more understanding and help the situation...I get it...it's a Maddie issue...but so age appropriate at 18 months not 4 years old...I get it...it's not cute any more...at least at her conferences next week I will know that not everything will be good...On Friday at Walmart Maddie decided she needed to puke...let me tell you she really does not puke...she likes to get her head all the way in the toilet sometimes with her hair touching water and coughs...yes her hands all over the toilet...she has been doing this since she was sick with the pukes...now she has continued and we cannot get her to stop it...so there she is head down in a Walmart toilet...there is not enough antibacterial for that...we left and showered immediately...Saturday we went to a birthday party and she took down a unsuspecting girl from behind...the girl was in a fancy princess dress and Maddie took her down from behind...to the ground...it was WWE right there in the lobby of the movie theater...in front of her mother of course...good times and apologizes all around...how do you teach a stranger to fight back and put Maddie in her place while apologizing  and disciplining your daughter for being a pint sized bully...not well let me tell you...I just rolled with it and told chad to apologize again to the mother since he knows her...I have to admit I am ready for the week to end...and know that years from now I will look back and laugh...or drink...

Monday, November 25, 2013

BeeBee...

BeeBee is how Maddie refers to her baby doll...this doll is one of the most important items in our family...in fact I almost feel guilty in referring to this well loved baby doll as a item...something that could be thrown away or replaced...this baby has been with Maddie since the beginning...when I found out about the extra chromosome I bought nothing for her...I was so consumed with just trying to keep myself sane that I did not want to fuss about anything including bedding, clothes, toys, nothing...we were not sure Maddie would live...we were not sure of much and I did not want any reminders of her if she was to pass...and then one day near the time I was to deliver Maddie I went to my favorite shop here in town...Country Charm...a small local store that has meaning to me...and I bought a blanket for her...a pink silk and fuzzy one...it was perfect...Maddie was born and the blanket was placed with her from the moment she was born and is still in her bed today...so when we came home from Denver I had this strong urge to get Maddie a doll...not clothes or a bed....I had to find the perfect baby...I wanted one that looked like Maddie...one that she would love and keep her safe like I had when I was a child...so we looked all over the Internet, Denver, and then I found it at a locally owned toy store and it was perfect...the hair...the eyes...the smell...perfect...Maddie has had this baby since she was a baby and it has been through every hospital stay, every vacation, every night of sleep...this baby has been to DC and back...it often goes to therapy and camp and even the lake...every morning you can hear Maddie saying good morning to BeeBee...if she puts baby down and returns she always greets baby with a Hi BeeBee a hug and kiss...it is the first thing she seeks out when she returns from school...this baby has seen it all and has been thrown up and washed more times then I can count and still has the smell of when it was first placed in Maddie's crib...it is not something I will try to replace or take away...it is not something I want her to grow out of...the baby is a huge part of the family that even Max is careful to keep a watchful eye on it so it is not forgotten...the blanket and the doll mean more then a monetary value...the blanket was bought to wrap my baby in no matter the outcome....the baby was purchased to protect my baby and always give comfort...as Maddie has gotten older her baby has learned to dress it self, go potty on the potty, dance, do treatments with her and love to be a perfect sidekick to my girl...

Wednesday, November 20, 2013

What does therapy look like????

What does Maddie's intensive therapy look like...Maddie has therapy at school and then privately...in school she receives speech, OT, and PT...3 times a week at various times and in various settings...sometimes in the classroom along side her classmates and sometimes pull outs...but her private therapy is what takes the cake and why we have seen a huge improvement with Maddie in skills and speech...Maddie goes to ACM Monday - Friday for an average of 6 hours per day...here is some of the examples of therapy that she is exposed to weekly:
-Real world therapy this means she goes into the community and participates in everyday things such as grocery shopping, department store shopping including dressing rooms, going to the store like hobby lobby with the list and getting the items to perform the activity, sitting and ordering and eating in a restaurant, how to act in public by walking, holding hands, talking with people who talk with her, exposure to life in general.
-Field trips this is anything from the movies to pumpkin patch, llama farm, airport, mountain, pottery by you, park, pedicures, you name it they will or have already done it!
-Maddie receives feeding therapy everyday at ACM she eats family style with the staff and kiddos...learning to chew, try new things, she helps make her own lunch everyday, washes hands, uses utensils, cleans up after self, etc.
-there is breakout one on one therapy in speech, OT, PT this is filled with expectations and goals that Maddie will meet...this is them pushing her along and making sure she is ready to enter school and life
-group activities this is where Maddie is with other kiddos and has organized games, activites, play and receives guidance from staff and sometimes therapists to work on needs of all the kiddos...
The ACM staff is amazing and they work with Maddie and us closely to make sure Maddie is getting what she needs from her day to be successful in life...

This is a typical week for Maddie without more therapy...we would have not seen the growth for Maddie...again if I could turn back what I know now...I would push for more speech earlier...because as a society we put your worth on what you can offer others...Maddie has to be able to communicate her needs as well as reciprocate the needs and wants from others...through this I have discovered that being practical with Maddie has been good for my outlook for our future...setting Maddie up to fail because of my ego only hurts Maddie and my heart....asking others for help with Maddie's development is now our reality...the best thing we could do for her...

Monday, November 11, 2013

Update of sorts...

I suppose this is a update of what's been going on with our busy growing girl!

Academically Maddie goes to preschool Monday thru Thursday for 2.5 hours...she has speech, pt and ot 3 times per week...we like the preschool setting because it gets her ready for a school environment...lining up, drinking fountains, schedules, teachers, and daily expectations...after her day at preschool she is bussed to her intensive therapy place...it is truly amazing she receives one on one to small group therapy all the rest of the day working on speech, ot, and pt...she goes out in the community and receives therapy by going to stores or going to a museum...even eating at restaurants and how to eat and act properly...she even swims weekly and focuses on how to swim/breathe and speech and of course lots of play! I tend to mother or you could say baby Maddie to much...so they push me along and have potty trained her and encouraged her be more independent...always reminding me that Maddie is a child first...because of this intense schedule Maddie is doing amazing with her speech, writing and endurance...Maddie is still amazing us everyday with her knowledge and spunk for life...also with this is a struggle of what we want for Maddie...and what is reality...We want Maddie to be mainstreamed into school...but as time goes by and we see Maddie for Maddie And we understand that may not be the best route for Maddie...only time will tell and we have a year before we have to a make that decision...but for new mamas out there my only advice would start intense therapy sooner not later and work on speech...your child will run!

Maddie's health....well is that not the million dollar question! Maddie is in pretty good health for Maddie...her esophagus has stayed open for 1 year...this is huge! It feels like a lifetime ago we were fighting this battle...but we traded in the esophagus issues for trachea and lung issues...she still receives vest, nebulizer, and steroid treatments 2x daily...this helps with the excess mucus...Maddie caught something a month ago and we are still trying to get it killed! So we are on antibiotics probably throughout the winter to help with the mucus in her lungs...of course this is a concern for us but it is manageable at the moment...Maddie is still on oxygen at night...but she hates it and rarely keeps it on...her last sleep study came back that instead of stoping breathing 11 times an hour after her tonsils and adenoids came out she only stops breathing 4 times per hour...this is a huge improvement...but the oxygen will stay put...Maddie still is having thyroid issues with stabilizing her numbers...but I hear this is typical with youngsters...Maddie is also still on her biotin for her 20 nail dystrophy and has not lost anymore nails and they have stop peeling off...and in big news her hair is starting to grow! Yeah for progress!

Maddie's diet...this has been a full family affair! We have all changed the way we eat for the better...and are regularly being active together...going to the park....or even just dancing around the house....we have switched to 1% milk and only 2 glasses per day...she is back to baby food vegetables and some fruits...I need her to get the nutrients but the girl will not eat a green bean or anything green for that matter! She will eat lettuce but only smothered in ranch! Speaking of ranch we make our own low fat and so Maddie can still enjoy dipping! The biggest change for Maddie's eating is her lunches...before I would take the easy route and pack her canned ravioli or spaghetti ...not anymore! She gets quesadillas with low fat cheese...home made pizza with  low fat cheese and a crust of the whole grain crust bread...if I pack spaghetti it is home made...I have also started packing her Meat with cookie cutters to make it fun! her lunches no longer have milk or juice but water....this change has helped with her acid reflux and her tummy size! But I have taken a stand and I am not submitting my meal plans to her doctors...I figure they can trust me to do right by my daughter!

So here we are mid November and me and Maddie are just looking forward to Thanksgiving and the upcoming Elmo show! 

Wednesday, October 2, 2013

Pushing "stuff"

I had an illusion of what life would be with Maddie...and then I had no expectation of her...I did this to protect my heart...I lied all the time trying to make myself believe that someday...my little girl would do everything I wanted her to do...selfish...of course...but what mother does not put that on their daughter...want more for her daughter then she had herself...what mother does not have an glorified perception of what their daughter will look like, act like, become...I did...I dreamt of being a mother to a daughter since I was a daughter...when I played dolls they were always little girls...me and my dolls matched...my grandmother would make coats, clothes to match mine...I was and still am a girls girl...so Maddie came about...and I was and at times still am lost...but along the way there has been a constant that has always held my hopes together...to always make me look forward to what may lay ahead....and that are therapists...yep the people that came in my home every week without question or judgement...the ones that Maddie spends her days with today and almost everyday...teachers...Maddie's therapists /teachers have always been the best...we are very lucky to have the best our community has to offer and I would say they are as good as any other place...Maddie's first therapist saved my life as a mother...along the way she told me and showed me how to teach Maddie...that I should be proud of my girl -not embarrassed...yes most mothers probably did this on their own...but I was so mad that I was Maddie's mom that I forgot how to mother...and I was very depressed and just pissed...but Maddie's therapists always told me to get it together or pointed out all the "stuff" she was doing...and through out the years this still rings true...I can get sad or upset that Maddie is not doing "stuff" but they are always there to remind me that Maddie can do "stuff"...lots of "stuff"...I know in the beginning of this journey who I thought were key players in Maddie's life...and I was wrong on most accounts...her therapists/teachers are the most important figures in Maddie's life...why....because they are unbiased, educated, full of knowledge....and most of all hope...they have seen a child with Down syndrome do "stuff"...so their expectations can be high and relentless...I still to this day want to mother Maddie to make up for the lousy job I did early on in her life...so as the therapists push Maddie they push me to...and that is always good...for me in my girl!

Tuesday, October 1, 2013

BuSY MADDIE...





Thursday, September 12, 2013

Chunky..,WhAT...

Yesterday we were in Denver for Maddie's stomach emptying study and Areodigestive clinic...I knew Maddie's stomach does not empty "normal" so I was not surprised that it came back affirmative for slow emptying of the stomach...this is due to nerves to the stomach that are damaged or not working properly...so this can cause bloating, nausea, vomiting, or feeling full after eating a small amount of food...Maddie was diagnosed with this at birth...and she was on medication for it for 3 years and then we took her off...because the drug to treat this can be unsafe.."but not really" as the doctors say...they say that it really should not have a black box warning...but here is where it gets good! They do not want to treat it because Maddie is obese...yes you read that right! Maddie is 99% for weight and 50% for height on the Ds chart and has been put on a low fat diet...at the ripe age of 4! WHAT...I was not as pleasant as I should have been with this news...I am pissed...first because 4 months ago she was to little and scrawny as they put it...to now she is obese! (Gained 5 pounds in 4 months!) I have a food diary I have to fill out and send to the doctor...I have a calorie counter for her and sample meal plans! For real...Maddie is 4 years old...I know that Down syndrome kiddos can have issues with weight...hell I have issues with weight...but my eating disorder happened in high school not preschool! Sometimes I wish people would stop putting Maddie under a microscope...We go to this clinic to see GI, Pulmonary, ENT, Speech, Feeding, OT and now a dietician...I really only signed up for the ENT, Pulmonary and GI...the others just tagged along making suggestions along the way...I really would stop going to the doctors if Maddie didn't have the lung and esophagus issues...but now here we are and I know it is my fault...that is what pisses me off the most...I am really not pissed at them for telling me the truth...I am mad at myself for not doing better at feeding Maddie...I know that I am the one; the only one that provides her food...and the weight she has gained is because I have let her have an opinion on what she will eat and when she eats...I let her lead me...because for the first 3.5 years of life she was on baby food and Greek yogurt...I am mad because I have created this and I hope I am not to late to change it! Oh well maybe at the end of this Maddie can be the new spokesperson for weight watchers! (I am only kidding!)

Monday, September 9, 2013

Emotional relapse

Wyoming Buddy Walk organizers have a lot to be desired...it was my first walk and i do not get it...i do not get the point...at all...to raise awareness for Down syndrome? if that is the case where was the state newspaper, TV, radio...people other then families with members that were born with Down syndrome...gathering in the park by the University and dancing to music for hours is not what i call a friend-raiser...it is perpetuating a stereo type that people born with Down syndrome are happy and love music and to dance...oh sorry I forgot the games from the 1980's...if this is a walk...then lets walk the capitol and demand change for our state waiver system...or how Down syndrome is referred to by a state senator as a disease...encouraging people first language...during the event people at the microphone keep referring to Down syndrome as special -that is condescending...Maddie is not special...are they referencing that my son Max is not special? because he is just typical...seriously I do not want my daughter to be a perpetual child or special...she already has a HUGE ego...I want her to live a good productive life...you know i-n-d-e-p-e-n-d-e-n-t-l-y...after the dancing and 6 carnival games and lets not for get the big purple gorilla the walk began to the University Football stadium for lunch and a game...that would be great if my child was not 4 years old and has absolutely no interest in sitting in the hot sun and watch football...but i do concede it is great for alumni and older kids and people...

where does the $$$$ go when we raise $$$ for the Wyoming Down syndrome association?? if you are raising money for a cause...then how about touting the details...how you help new parents muddle through there diagnosis to possible services and/or resources that may be available to them...you now the services you did not provide for me...at all...and when questioned about it you said but we hold a buddy walk and we do not provide services to families that deliver in Colorado...or does the money go to research that helps to encourage the abortion of my child...instead of going to the education on how to teach my child...maybe the money could go to lobbying to our local legislators for the Wyoming Waiver system that actually helps families in Wyoming...providing lifesaving services...

the disconnect between the Wyoming Down syndrome association and the actual families is mind blowing...I have wrote the senator that has no people first language skills unless it has to do with millionaires and oil/coal moguls...i have also made my frustration known to the Wyoming Down sydnrome association...

But this is were my frustration boils...why do i care...why does it matter...why do i fight...there is no change that will ever be good enough...unless there is not a need for a Buddy Walk...because society finally sees my child as nothing special and different...my real issue...my daughter was born with Down syndrome and no matter how you spin it or how I have grown with becoming more comfortable with it...I still am very much afraid...and sad....yesterday was a bad day...and hopefully today I will begin to build back up my bubble of bliss and everything will become comfortable again...I cannot explain my fear of the future...staying in the present is truly my coping mechanism that works for me...

Thursday, September 5, 2013

Somersaults...

Confusion is how I feel...I think..I am not sure how to feel really...and I am not sure I feel anything...this is the deal...Maddie started another year of tumbling...yeah! Right? But there is a but...I am seeing the gap and it is becoming big, glaring, more...Maddie can do all of the tumbles like the other kiddos...but what she cannot do is sit and wait for a turn...stop touching other kids...talk to them like a 4 year old typically does...no she is called the baby...and the other girls do not necessarily want to sit by the "baby"... It hurts...it is so frustrating to have the other kids sitting and wait appropriately and Maddie doing summersaults down the mat or kissing the little boy that dares to be near her...I know Maddie can do better...I know that this is very important for her...this teaches her so much more then balance and cartwheels...this teaches her about living beside another person...appropriate touch...taking turns, standing in lines and following directions...the teacher is amazing and she is bringing in a helper to help out with the flow of the class...I watch Maddie fall and get up with a smile...I watch her try so hard and want to be a good friend...she just forgets sometimes...I wonder what the other parents think...I know I should not go there...I know Maddie has every right to be there...I know it is as good for there child as it is for Maddie to be in that class...even if Maddie takes up more of the teachers time...I just do not want to hear the comments...or get the looks from the moms that give me a nasty look when they see it is my child that is the naughty one...the thing is this is the beginning or the continuation of my quest to have Maddie be fully submerged into a 'normal' class setting....in a typical life...for some unknown reason I still think people will not notice that Maddie is Maddie...that she will show them that she is just like there kid...with a little more personality...I try to tell myself all the other kids will act like Maddie in time...Maddie does not act naughty just because it is the first day...she shows her true colors on the first day of class...there is no honeymoon with Maddie it is just all out stubbornness and self will...someday I will reflect back on this and think how not a big deal it is...I will have to worry about her education and fair and equal rights...I know this is the small stuff...but again it just gets to me...I like keeping my Maddie is a protective box...but I know her and I still need to grow...

Monday, August 26, 2013

Blurred Lines...

To explain it is not naked sexy women and men dancing with animals...it is how I see Maddie and her life outside our family...I think Maddie needs more...more then what we are able to give her...so with that more I have to give her over for the weekdays to professionals that know...my ego is shot...I want to be that person that can...I want to know how...but I am not...I coddle Maddie...I seriously think she is so cute and perfect that I do not correct much of what she does (monster i have created) if she wants held -I hold her...if she wants me to feed her -I feed her...if she wants anything I move the earth to comply...I do this because I do the same for Max...yes it has bitten me in the ass...yes my children are very spoiled...but they are mine...and I own it...

Maddie is 4 years old and is completly scheduled from the time she gets up to the time she goes to bed...structured scheduled....and with that Maddie thrives and grows...I am not that person...I am a lets see what the day feels like and then find the adventure...But Maddie must be ready for kindergarden...I want to see her in a full inclusion classroom setting...with limited  help from others...so for this to happen I think this is the best route to get there...

Maddie is not in 'daycare'....she is in preschool and then goes to a intensive therapy program that is everyday...pt,ot, and speech included...and you know what -she loves it...and she also loves coming home with me...but everyday when she wakes up she wants to go to her place...where the therapists love her and teach her and expect her to do great things...and I am trying to muddle my way my own ego...I will get there...because I can put Maddie ahead of my own self need for cuddles...so the structure that Maddie has become so accustomed to should be interesting on our annual family Yellowstone trip! I hope the bears and wolves appreciate Maddie's howls...

Thursday, August 22, 2013

Monster...

So my break -was short lived! and the thought I was cured from blogging apparently did not take...we have a PROBLEM! Maddie is a bully...no other way to put it...she is socially not nice...she does not use her words...even though kiddos will tell her that god gave her words so use them! She hits, pushes, and screams in kids faces...it does not matter if she knows the kids or not...if a child does anything to Maddie...she gets her justice...she self advocates very well...just not socially acceptable...so to say I am not nervous about this upcoming school year is a lie...if her schedule and predictability is not in place...they will have major issues...Maddie is not just a I am going to push you down and walk away kind of kid...if she does not see tears...she will then push them again and yell at them...until they understand that you do not mess with this pint size fire cracker...Maddie comes off as nice and laid back -until...at home she is getting out of hand...today I resorted to timeout...more for me then her...until recently I could redirect her...interest her in other things...not now...now she knows how to get self perceived justice for herself...she is even beginning to fight me and Chad...she throws food at us at dinner if she does not like it...she hits me when I do not do something she wants in a right now fashion...all I can say is she is in the ferocious fours! I hope we all survive...any suggestions???? 

Monday, August 19, 2013

Friends...

Can my blog be my best friend? it acts like a BFF?...it listens...it comments and gives me great advice...tells me to get over myself...and always stands by my side....and never judges me (mostly)...however, i am thinking I do not need to project my personal issues onto it anymore...I no longer want to have others understand what it is like for our family...because our family is like yours...I no longer get my panties in a bind when I hear hurtful things...I just get pissed and tell the person how to correct it...I no longer want to share everything about our life...I want to keep it a secret almost...because its mine...in my mind Down syndrome is still a big deal....i just do not need to make others feel how big of a impacted it is on our family...hospitals are our vacation destination...and there is no use fighting something that we cannot change...in the past i wanted others to feel my pain of how it is having to go to Denver to hospitals every month...but i cannot make others understand what it is like...this is a members only club...of course I still struggle with the what ifs....but my coping mechanisms have changed...instead of writing about them...I eternalize them...I try to find out solutions for them...I read other moms blogs and I learn from them...Of course i read blogs daily to keep up with our friends...i care what is happening and i truly learn something every time i read a post...I will be forever in this blogs debt...it gave me back -me and for that we will be forever friends...

Tuesday, July 16, 2013

Mucho Maddie...

Hey friend! CaLL mE MaYBe?
BFF's waiting to jet away!

its been a day!
new glasses!
Powder RiVer let'er Buck!

Thanx Uncle Josh!

when Mom is away!
Catch n Realease
I will take it from here!


 I am READY!!


 concentration and pretty painting!

Monday, July 1, 2013

Happy Camper...

Maddie has had the BEST summer ever! she and Max are attending a all inclusive Day Camp...the counselors are AMAZING...this summer Maddie has exploded with words, confidence, and independence...seriously this has been the most wonderful unexpected experience for our children...Max loves going and playing with ALL the kiddos of various ages and developmental abilities...the unexpected part is Maddie finding her own community that she will grow with for life...everyday I get pix of what Maddie and Max are doing and learning..it warms my heart to know that my kiddos are learning, growing, and enjoying...here are some of the pix I get throughout the day...enjoy!
Max leading the way for Maddie and her friend..

we are in Wyoming!

at the movies!


bowling...but Maddie thinks it is a hanging toy!

sand table..

tennis anyone!

I bite!

peek-a-boo

llama llama time..


marshmallow toothpick structures

can you hear me now?

look out!



Maddie loves older girls!


Flashlight tag! I am ready!

snack time..

Jumping Maddie

Monday, June 24, 2013

once upon a time...

How it all began...when I wrote this I was just starting this unknown journey...it is very raw...but I think an important story to remember...for the new mother that just found out...maybe just maybe she (you) can find something to connect with in my story...

August 17, 2008 we went to Rapid City SD to Reptile Gardens. Our 2 year old son is a fanatic about everything nature! My husband and I discussed throughout out the day/year about having another child. I just could not believe how perfect Max is, so beautiful, so smart, so funny, such a huge personality. When we got home there was a perfect ending to our day. We put our perfect son to bed and well one thing lead to another and a baby was conceived. I knew immediately I was pregnant. I knew we were ready; I had prepared my body I stopped taking the pill a year and half before, I was taking folic acid, I was exercising regularly, I was eating as much hormone free foods as possible, I limited all caffeine and never drank alcohol. So I bought an economy sized pregnancy test pack and began testing; the test was POSITIVE! Of course I am one of these people that has to take multiple tests to be sure all 15 were positive! I was pregnant with another perfect person and I was so excited but very scared more scared then my first pregnancy. I told my husband that we were pregnant and he hugged and kissed me with love, joy and excitement! We choose not to tell anyone without confirmation from the doctor. I made my appointment with the doctor and it was official I was pregnant. At 8 weeks pregnant I had my first ultra sound. I remember the doctor saying this is a strong heart beat you have nothing to worry about. I hung on to those words for months how strong the heart was beating. I went in for normal check ups and everything was normal no sick, no worries, just anticipating the babies first movements.

It was time for a routine 5 month ultra sound it was in January 2009 and we decided to take our 3 year old to meet his new sibling. It was an experience! He stole the show with his comments and enthusiasm he had everyone in the room laughing. We did not want to know the sex of the baby we loved the surprise. At the end the doctor lightly mentioned that she did not see a stomach bubble and would like to do another ultra sound in a month. Both my husband and I did not think much about this. I mentioned this to friends and they reassured me that if she is looking in a month it must be nothing to worry about. I did no research during this time which is unlike me but I just did not think it was a big deal. The ultra sound day came February 17, 2009 I told my husband not to come that it was nothing and that there was no worries besides I was feeling the baby move and it was very reassuring. In the waiting room I remember getting really excited that they had a 3-D ultra sound machine I really wanted those pictures. I joked with the nurse then the doctor and laughed at my son and how much of a personality my son is. As I lay on the table we went through all the anatomy of the baby her assuring me things looked good and the doctor got quiet and she changed her tone and her conversation to me. She started frantically going to the heart, to the brain, measuring the bones and talking in medical terminology. I froze and I knew then something was wrong with my perfect baby. I tried to hide the tears and be strong but it was impossible. All I remember about her comments are no stomach bubble, Tracheal Esophageal Fistula (TEF) and Esophageal Atresia (EA), Down's Syndrome and when is it good for you to go to Denver to see specialists. As I cried she hugged me, the nurse hugged me and the office people could not look me in the eye. It was the worst day, the saddest day so I thought. I called my husband and I was a mess I could not get to the Internet fast enough to learn about everything that was just being said me. I could not believe that my little baby was going to be possibly born without an attached Esophagus. How would she eat or how will she survive. My husband called the doctor to get more details and she assured him like she did me that the risk for Down's Syndrome is very low and that we needed to see the specialists to see about the TEF/EA that this is a very rare occurrence 1 in 4,000 live births. So we made the appointment for the following week.

We went to Denver as a family during this time I could not let go of my 3 year old son it was like I had to keep him close to protect him from what was growing inside me. On February 21, 2009 we saw the specialist and still there was no bubble in the stomach. Then the doctor said to us he would like to do an amniocentesis to rule out Down’s syndrome. He only gave us a 20 percent chance of having a Down’s syndrome child. I was reeling I could not believe what was going on it was like I detached that day from the baby growing inside me. The doctor said we will see you in a month to be drained of amniotic fluid because the baby could not swallow he explained that I would fill up with amniotic fluid dangerous levels that could put me in to preterm labor this is technically called polyhydraimnios. Again I did not realize the challenge with the baby not being able to swallow there own pee how huge I would get, how uncomfortable I was looking 9 months pregnant and I was about 28 weeks. Also, during our next visit we were to visit with the pediatric surgeon.

On February 23, 2009 2:10 pm it was confirmed I was carrying a child with trisomy 21; Down’s syndrome and asked if I would like to terminate the pregnancy. 92% of child diagnosed with Down’s syndrome are terminated. All I could do was ask if the baby was a boy or a girl I needed to know this information. It was girl he said. I threw myself on the ground I was hysterical and alone how was I going to tell my husband this terrible news. The moment I stopped touching my belly I wanted nothing more to do with this pregnancy or this baby. My husband got home from work and I told him the news. I cried so hard I thought I was dying. I think something in me that day did die I buried the notion that I was having a perfect child a perfect little girl. I could not picture this baby as a little girl; a baby I pictured her as a teenager or an adult. I grieved that I was never going to plan a wedding with my little girl, that I could never relate to her emotionally or socially, that she would never be the little girl that I expected or wanted. I did not want this thing growing inside me. I hated her. I hated myself for feeling this way. I could not believe my own reaction to the diagnoses. I thought I was stronger then this, better then this, I thought I was open minded a free spirit that I was up to anything. I am a glass half full personality. Then I turned my grief to my son; what had I done to him how and why does he have to live with a special needs person and have attention always going to his sister instead of to him. To be referred to as the boy that has the Down’s syndrome sister. I was just sad and there was no going back.

I did think about terminating this pregnancy I thought long and hard about this. It was crazy how I did not think my husband should really have an opinion on this topic. I really thought that this was my decision to make and solely mine. As it got harder to make this decision of course I wanted his feedback I was sure he would say lets get rid of this baby it is just too much for all of us. To my surprise and dismay my husband was fine with this news. He took about 24 hours and then bounced back and could not wait for the challenge of this little girl he was excited. During this time the little girl growing inside me was very active. I mean she was so active I felt like she was beating me up, she was actually hurting me she was already feisty! I realized that she was speaking to me she was trying to tell me that I am alive and you are MY MOM so either rise up to the challenge or get the fuck out of my way because I am coming no matter what.

All the while I was sick of people telling me that it would be fine, that she was coming to special parents, or the “right parents” you see I am a daycare provider and my husband is a teacher. I guess that meant that we were up to this challenge. I beg to differ on this. Everyone just kept on saying Down’s syndrome children are nice and sweet and always happy. Like that was supposed to make me feel better that she would be living with me forever. I even had people say well at least your child is alive and not dead or that you did not loose her in miscarriage. Really that is the best they can do I hated all those comments. The worst comment was probably when a lady who I did not know said congratulations on having a child with Down’s syndrome. I came unglued with this comment it was one of the most insensitive comments I have ever heard. I remember discussing the hard decision of if I should continue with the pregnancy and my friend being revolted by notion of abortion. She actually said you would never do that; that is awful I told her not to comment on this until she was pregnant and had the news that she was having a Down’s syndrome baby. For a month at least I was in a deep depression and angry about the situation that I had put my family in. I refused all help and refused to have a baby shower. The results from the amino and blood work confirmed that my husband and I were at no greater risk to produce a Down’s syndrome child than any other couple at our age. When I went to the doctor I wanted to tell every pregnant person in the waiting room that they had no worries on having a Down’s syndrome child because I was the statistic 1 in 733.

I went in to preterm labor at 30 weeks it sucked they gave me shots and was put on medicine to stop the contractions. The medicine made me thirsty, nausea, and very shaky and will be on them for the duration of the pregnancy. But in the hospital that night I realized how much I wanted my baby that this was my little girl. I remember screaming at the nurse that if she shoves that thing up my vagina much further and ruptures my water my baby will die so to get another nurse. That was the first time since hearing all the news that I referred to her as my baby, my little girl. I wanted her and I wanted her to live. That day I touch my belly and started to massage her and love her like she was mine. She is mine and her name is Maddox (Maddie) Rose and she is my perfect little girl.

I read about all things Down’s syndrome and saw I was completely wrong on all my views and assumptions of children with Down’s syndrome. In the meantime we went to Denver for our second visit I was drained of amniotic fluid 2 liters. It hurt but it felt good afterward I was as big a 37 week pregnant person instead of being just 30 weeks. We also met with the pediatric surgeon. She is a young aspiring surgeon only 5 years experience pretty new but has great doctors to learn and mentor from in her practice and will be only assisting on the surgery. Tracheal Esophageal Fistula (TEF) and Esophageal Atresia (EA) was explained to us and did not sound as daunting as everything I had read on the internet. She said if this is the only this wrong with our little girl she will have a smooth recovery. She explained how the surgery would be done with a scope, that only 2 places in the United States perform this surgery with a scope. We feel very confident with our little girl’s surgeons. Of course we are hoping for a TEF Fistula (obstruction) instead of a full EA Atresia (Open gap between stomach and esophagus). The hardest part of the TEF/EA is the unknown of what she has fully until she is born. She will have a series of test done a VACTERL which stands for V-vertebral, A-anal imperforate, C-cardiac, T-teteflea, R-renal (kidney), L-limb to determine everything that needs to be fixed. TEF/EA will be determined by a simple x-ray. Then she will have surgery within the first few days of life to hopefully correct the TEF/EA. She will suffer from severe indigestion or acid reflux for most of her life that will be helped with medication. With Down’s syndrome children a heart defect is a big concern we are hoping for the best, her heart has always been strong. A huge thing for me was she may not have a butt hole. I know this is crazy but I was freaked out about this. The doctor explained this is a simple surgery and has a very good success rate.

Some good and surprising news is that I will be able to breast feed with a pump and after surgery hopefully I will get her to latch on. After that visit with all the doctors it was four hours later and we were ready to go home. Both of us were encouraged with the news of little Maddie and that she was gaining weight and as perfect as could be! Of course there was a snow storm in March that stuck us in Cheyenne for another 24 hours. It was par for the course!

I did not realize after that trip to Denver my life would be filled with Doctors visits. I see the doctor 2 times a week for an ultra sound and NST non-stress tests. By now I am sick of ultra sounds and the pictures that come with them. I do have to admit the 3-D and 4-D ultrasounds rock and I have seen my little girl and she is the most beautiful little girl I have ever seen.

I knew I had gotten full of fluid again the contractions were coming stronger and more often. The Doctor told me I had to be drained within 7 days! So off I went to Denver to get drained. And another April snow storm! They took 2 more liters off me. This time it hurt and I was tired; very tired and sore. There was not much relief and I was contracting pretty hard and consistently after the procedure. Again I got shots to stop the contractions. But there was the best news of all! My little Maddie had a partial bubble in her tummy. Something we have never seen before. I can not tell you the joy and excitement; it is the best bubble I have ever seen. It still means she has TEF/EA but at least there is hope for TEF. During this visit she was tested for lung development of course it was not good news. We have gotten used to this. She scored a 31 she needed to be above a 55. The doctors assured me that this is miner and that she will most likely just need a ventilator.

I am continually monitored twice a week but there is an end in sight I will deliver May 13, 2009 in Denver. I am so excited and nervous and scared shitless! I finally bought her a blanket and some clothes. I prepared her bed and have a car seat. I am ready for her and I am up to the challenge of being her mom. I have specialists coming in once a week to work with her until she is 3 years old, then she will attend their preschool and then she will be placed in main stream public school. I know that early intervention is best for child with Down’s syndrome. I am doing everything I can to make sure she has the best. I will continue my in home day care for her stimulation and development.

I am at a good place emotionally however; I have good and bad days and then really bad days! I have experienced people’s ignorance and prejudice towards my child and she is not even here yet. I know I need to remember you cannot fix stupid and that is what we are if we do not try to understand the unknown of being a parent of a child with Down’s syndrome.

Trip to Denver
It is time to go to Denver and have Maddox I have packed for the family and myself knowing I have forgotten almost everything! We arrive to drop Maximus off at his Aunt’s and his Grandma will assist in taking care of the great Maximus while we are in the hospital. Naturally things are not going as I have planned Chad is working most of the day and I am overly nervous! We arrive in Cheyenne to drop off Max. We are not in a good frame of mind and we are as nervous as we have ever been. It is the first time we are leaving Max over night and he will stay for 6 days an eternity in Max time! We stop in Loveland for our last meal and all we can do is talk about our kids and what the future may bring. We stay in a hotel that I cannot remember the name of. That morning I shower I do not recall much of anything else but walking down to the lobby for Chad to get some breakfast and watching the people go by and thinking that they have no idea what is going on in my life or with the life I hold inside me.

Birth
Finally we arrive at the hospital Chad is having a hard time with knowing in 2 short hours he will see his wife cut open again and have a baby that may or may not survive. We are joking around trying to keep it light and not on topic of what is lying before us. Soon the nurse gets me hooked up to monitors and doctors start coming to explain the days events and what will be happening. Before I know it I am walking to a “sterile” hospital surgery room. Finally we get to the room and I am lying there butt naked from the chest down. The anesthesiologist starts injecting me and I was becoming numb from the toes to the chest. Even my nipples were erect and numb it was a very strange feeling. Dr. Perrecco makes his entrance and tells the nurse to prep me again he was not impressed with how she had done the prepping. They did and I knew he was in charge and everything was going to be ok and I was not going to die! Soon the room filled with doctors and nurses and everyone introduced themselves including Maddox doctor. Her name was Dr. Lawrence the most important person I thought in the room and I would not forget her face. Soon I was cut open and Dr. Perrecco says he sees a gush of black hair then Maddox swims up towards my chest and Dr. Perrecco has to push her down and out! She came out screaming and pissed. Dr. Perrecco said “are you sure this is a baby with Downs? She has great muscle tone”. And with that they performed some tests on her in the delivery room to the right of me. I can remember Chad looking at me and saying it is EA I just cried I thought she really could die. I prepared myself for this but I always held out the hope that she would survive. Dr. Lawrence brought Maddox over to see me; I was able to hold her for about one minute. She was so beautiful I could not get over her black hair it was almost overwhelming. I noticed right away that she was frothing at the mouth; I looked at Dr. Lawrence and said she has TEF to. And with that Dr. Lawrence and her team took her away to begin the VACTRAL.

Diagnosis
As I was recovering Chad was with Maddox going through some of the tests. I kept asking the nurse if she had seen Chad or if she heard anything about my baby. She new nothing and she actually started getting concerned about what was going on. She took me to my recovery room and went off to see if she could find someone who new something about Maddox. My dad came up to be there for me and he was a life saver; he was there when I entered the recovery room and for Maddox surgery. When the nurse found Chad he was ready to be away from doctors poking and prodding his little girl. He confirmed that she had an (ASD) a 5 mm hole in her heart but that it was nothing to worry about that it was the good hole. He said that everyone is born with an ASD and that in most people it closes with time. He said that Maddox was crying hard and that would help close that hole. This was the best news yet that we were getting answers that we were wondering about for months with in a couple of hours of her being here. Dr. Shippman and Maddox’s anesthesiologist came busting into my room. I mean she was running! She said “why did you not call me! I was clear across town when I got the news I was doing the surgery!” Mind you this is 4 hours after Maddox was born. They had determined no heart surgery was needed and that they would repair the EA/TEF with a scope. I think that this was Dr. Shippmans first repair alone and she was crazy excited! The anesthesiologist drew pictures on how they would repair the EA which is the gap in the esophagus; we still did not know how big it was but we new we would have all the answers with in a couple of hours. This was relieving in a weird way. 4 hours after Maddox was born she endured her first surgery and 3 hours after that she was “fixed”. Maddox had a 2 cm gap in her esophagus (EA) and a fistula between her esophagus and her trachea (TEF). Dr. Shippman entered the room looking tired and proud of herself; she told us the great news and what we could expect for the next 5 days. Maddox was not to eat and could not be picked up. She would be sustained by fluids. They would take her blood everyday to check what carbs, proteins, fats, etc. needed to be supplemented for her to thrive.

Maddox's Recovery
Finally, the nurse came in to my room and said I could go see Maddox I remember it was dark out I was so excited and scared. I had to brace myself for all her tubes and what she would look like. Chad wheeled me down to the NICU. It was a crazy place to be in I never thought I would be there. I never could have imagined what it looked like the sounds, the smells, the nurses and doctors and the babies the sick babies everywhere. Chad and I got our badges to enter the NICU and made our way back to the last room on the left room number 4. There she was Maddox Rose was lying there with nothing but a diaper, a hat and tubes everywhere. The floor 3 NICU is a very loud place something I did not expect; there is always bells and buzzers going off. You soon and very quickly learn what all the sounds mean. But besides that there was my little girl she was so beautiful, she was so cute, I loved her. All me and Chad could do was look at her. We were not to touch her. We could talk to her but that was it. It is very unnatural for parents not to touch there baby. We learned very quickly that the nurses would answer most of question on how to care for our baby. Most of the nurses were amazing and talented they were teachers. But there was a few nurses that were challenged with working with parents one NICU nurse said to me “don’t worry you do not have to touch your child to bond with her” I can say I was visualizing that I was beating the shit out of her. The next morning 6:00 am my catheter was removed and I was instructed to start walking I walked straight to the NICU to see Maddox I could not get there fast enough. My next 3 days was learning about Maddox and what challenges lie ahead. The staff at the hospital were incredible there were people to help with breast feeding, social security benefits, and how we were going to pay for all of this! They even gave massages to women in the hospital it was great. I cannot explain the incredible feeling of helplessness you feel when your child is in the NICU. There are doctors and nurses that think there way to do things is the only way. Literally depending on the nurse it will depend on how your baby is swaddled to how they are fed. Some nurses encourage you to breastfeed some bottle feed or even if you should be involved in the care times. Care times are the feeding, changing diapers and taking your babies temperature. But no matter what no one could have prepared me for leaving the hospital with out her. This was the worst day! I cried the entire time we where checking into the Ronald McDonald House. Chad had to fill out the paper work and move us in. I was helpless. That night I just new I had to buck up and get over myself! I also new Maximus would be joining us and I needed to get things together for him. That Monday was a big day Maddox had her swallow test to see if the surgery was done perfect and if there were any leaks in the esophagus and if she would have to re due the surgery. Maximus was coming to join us at the Ronald McDonald House I could not wait to see him. By 3:00 pm Monday and 6 days after she was born we were told she had a perfect fix and now she needed to heal. 5 minutes later Maximus came running off the elevator and he looked like he had aged a year! He was no longer my baby he was my big boy with the best smile! Maximus is truly beautiful I missed him so much. A routine soon followed Chad would take Max to play dates all over Denver and I would visit Maddox. We would always come back together for dinner at the Ronald McDonald house. I can not explain how cool the Ronald McDonald house is; it child centered and made us feel so welcome. It truly saved us financially. By Wednesday only one week after she was born she graduated to the 7th floor NICU this was the NICU that babies are released from the hospital to go home! One by one all of the tubes were taken out. Pretty soon she was the only baby in the NICU that had no tubes. I got to stay the night with her in the hospital it was amazing and very exciting. I did not sleep a wink! On day 13 I received a call from the NICU that they needed milk I rushed it over and the nurse told me we were going to be released from the hospital. We were going home! I called Chad and he began cleaning the room and packing. Maddox had to go through a series of things to be released including a car seat check. She had to sit in her car seat for 4 hours to see if she would survive! she did! we were told that she would have to go home on oxygen and not to stop in Cheyenne. It was finally time the room was cleaned and we checked out; we went to the hospital to pick up our baby! The funniest thing happened when Maddox was released from the hospital Max was playing with some kiddos in the waiting room; I said "Max come meet your sister" and he said "no he was playing"! Then he looked over and saw her in the car seat he came running over and "said is this my sister; I love her"! It was amazing! He then looked at Chad and said "can we team work her". Which means can they do it together! So Chad and Max carried the car seat with Maddie to the car. The next morning Max woke up and asked do I still have my sister! YES!!


Tuesday, June 18, 2013

Testy testy...

The person i was 4 years ago is not who i am today...not even a hint of her really is in me...before i was delusional with a flighty personality...it was cute when i was young...or i thought it was...i never saw myself growing up or changing...who i was served me well...i got what i needed and used it...but then a ultra sound happened...and that day i died...in the beginning i thought this was the worst thing possible...me having to look at reality and not through my fairytale glasses...i struggled for a long time...probably to long...but the end result is not half bad....i am no longer ignorant...or selfish...and i could careless about people who continue to think my child is not equal...to them i will continue to fight and annoy,,,and hopefully one day make a difference...in my small world...

so why the dramatics...because in the beginning of this long journey...i had a different opinion about the test..

The test...if you have a child with Down syndrome you know the test I am referring to...if you don't...let me enlighten you...it is a blood test that tells you early on if you are having a child with extra chromosomes...we opted out of this test...not on a moral stance but on a I am invincible stance...I am not sure what I thought about the test before I had the no bubble ultra sound...but I know what I think of the test today...I think it is trying to eliminate a child like Maddie...maybe not to others but to me it is personal...Down syndrome is the only abnormality they test for prenatally and encourage to abort...or kill...which ever makes you sleep better at night...so me and Chad go rounds about this test...we argue...I research...I present why not...he presents why yes...it is just good family discussions and we always agree to disagree...the other night in one of round robin discussions...he said I would have wanted to know at 8 weeks pregnant if Maddie was going to be born with Down syndrome...this through me off the ledge...again...why...because for 4 months straight I cried myself to sleep...because my beautiful pregnancy was cut short...for 4 months I did not know the answer if my Maddie was goings to live or die...not because of Down syndrome...but her other health issues that came along with the extra chromosome...because for 4 months all I did was obsess over everything...because of the early diagnosis I had to begin the process of what if and knowing I have no power to change anything...I stopped loving my baby...I did...it was harsh and it was frustrating...the only reason for me the test was a good thing...was that we delivered in a hospital that could "fix" her when she was born...there was no separation from her...I knew what to expect in regards to surgeries and possible complications with her heart and esophagus...but on my heart and emotional side I wish I would have known at birth...so I could hold her and know that she was perfect...I know I would have still been heart broken...but I truly live in a dream like state...I like fairy tales and if I can prolong any happy ending I will...so if I could have waited and not been forced to make a decision on whether to kill my child or not...I think I would have been better off...when we found out everything health wise with Maddie we discussed a do not resuscitate on her...that is to something while pregnant I did not want to discuss...but we had to...or we thought we did...because if I was holding her and that issue came up...I would tell them to fight for her and if they could not "fix" her i would find someone who could...because holding Maddie is like holding perfection...

My life today is better then before we had Maddie in it...I would have told you 4 years ago that was not possible and hated you for trying to change my mind...but today as I watch her grow and learn and be a very productive member of our society I know that Maddie does have a place in this world...

Wednesday, June 12, 2013

Discipline...

Maddie is a typical 4 year old...she is defiant, challenging, and has selective hearing...she also understands every spoken request that is presented to her...if she chooses to comply...well that is a different story...Maddie does what Max is doing...or the opposite of what I am wanting...I am a complete failure when it comes to societies "norm" of discipline and my kids...I really believe in letting them learn through trial and error...choices...options...opinions....this was a GREAT  theory until it was not socially acceptable...Max was probably 5 years old when I realized I had help create a independent self starter that could crush our world...Max dominates our household...we are held hostage at his will...and then came Maddie...again the naive parent I am thought Maddie could not possibly be like Max...she will be compliant, happy to go along with our family just because...yeah not so much...Max and Maddie are only happy if they are dominating and monopolizing Chad and me...all eyes are on our children...watching them play, interact, fight, struggle...it is a wonderful place to live...not really...it is hard...it is all consuming...it is stressful... But maybe sum day worth it? Discipline is something I thought I mastered in college...And I did with other people's kids...redirection I am a certified pro...with my own...I am not...with other people's kids I am consistent and fair...with my own...not so much...if Maddie cries I cry and feel bad that I hurt her feelings...if Max cries I am mortified that I could not explain the issue with more patience...time outs do not work with Maddie at all...not even a little...the time out is for me...she just plays, sings or picks at the wall in front of her...with Max putting him in his room works...I have currency with Max I can take away his iPad...I can not let him have a play date...I can make him pay me a quarter for his fits...Maddie I have no currency...I will not take away her doll she sleeps with...that would be like me taking away Chad...with Maddie redirections works for the one second I am talking with her and she says Kaaaayyyy with a sign sorry...then she is back to koala hugging a child to the ground...The thing is Maddie knows...but impulsively she does not...she sees the item and goes head first for it...I like her tenacity...I like her willingness to fight...but I want the best of both worlds...I know that repetition is the only way Maddie will improve...I know that I have to redirect and then do it again another 589 times for it to maybe cross your fingers the "appropriate" behavior sticks...and then of course is the little self conscious voice in my head saying you better get this "right" or Maddie will never learn better...that she will be forever the naughty unruly kiddo with no discipline at home...in public I say over and over in my head fuck off...I don't care...it is my mantra to gawkers and on lookers that think that my kids are not up to societies high standards...maybe they are not but my kids will be able to say no thank you...they will be able to not care what others think...because I have let them think for themselves and be independent in there own views...so yes I have failed at societies socially acceptable behaviors and my children...but I have raised thinkers...only time will tell who was "right"...

Monday, June 10, 2013

Lean on me...

There are many kinds of support...support is not something I am comfortable with...I have always felt like it is a hand out or a pity thing...I am thankful to a friend that told me that I just need to learn to say thank you...over the years with Maddie I have...learned to accept support and to say thank you...and mean it...in the beginning I thought I knew what I needed for support...and yet everyone failed miserably...at the time of Maddie diagnosis I was broken...I could see no light...I hated "Holland"....I hated "Gifts"...these everything is going to be ok books and poems and sayings...were aweful and I viewed them as entaganistic...like everyone that had walked this journey before me was better then me...that they knew something I didn't...so I shut down all support from people in my community...because I just could not handle it...that is when I decided that home is where I would stay and friends would be online through blogs...I wanted nothing to do with people that I saw on a regular basis...because they could not understand me or my life...I was alone...and that is where I felt safe...but all the while I wanted support...I just could not understand it or handle it...so as the years passed and I started to understand my depression...I started to come out of my very small bubble...step by step...little by little...I have accepted support ....I have gained community friends...that I actually talk to face to face...this is a huge step and one that has given me the most support...in this new found accknowledgement and my self worth rising because I am no longer the broken mother of a few years ago....I have learned to share Maddie...I have learned to ask for help with her...even through all the new medical issues she is having I have not felt broken...I have felt like I can fight...she can fight and we will someday move past this..asking for help with Maddie has helped me truly understand the concept of community, village, family, support...I cannot teach Maddie as effectively as her summer camp support staff or her preschool teachers and therapists...raising Maddie will always need to include support...now I can just accept it...understand it, facilitate it...and of course say thank you...


Tuesday, May 28, 2013

Summer

Summer is here...officially...and Maddie is in full blown summer camp...WHAT! I am excited for her...I know she is going to love it...I also know that she needs this intense balance of play, therapy and routine to make her blow up developmentally...on the flip side the reality hits that I cannot do it on my own...I have to ask for help...we are very fortunate to have some of the best therapist/teachers around working with our girl...and that is the only way that this makes this summer bearable...I miss her already and it has been 4 hours since she has left me...for a mother who thought Maddie would never leave...she sure is gone alot! Maddie social calendar is by far the busiest of the family...I have finally realized and/or accepted my role as Maddie mother...it is the role of caregiver and scheduler...Maddie mimics me and I hold her accountable for behaviors and such...but if I think of my role it is making sure that everyone in Maddie life has a purpose wether it is friend, teacher, mentor, therapist, doctor, nurse so on...each person plays a role in Maddie life and it is a significant role...they do not know each other and probably most of them will never meet...but each one has to be the best in order for Maddie to be her best...we don't just decide to do something it is generally with consultation from all contributing parties involved...for example potty training...everyone from me, mentors, teachers, and therapists all have to be on the same page...if we are not all saying the same prompts and using the same tools...potty training will take even longer...Maddie life revolves around what you cannot see...her insides...if the doctors and nurses do not do there jobs and I don't do mine then Maddie teachers, mentors, and therapists cannot do theirs...it is all a community of Maddie...the more I age and experience the more I get that I am in the middle and if I do not have my head on straight others cannot help my girl...so today we begin a new routine...a new chapter of sorts that will continue until Maddie has aged out...scary...not really...comforting that I am not alone in my love and passion for helping Maddie be more amazing...

Monday, May 20, 2013

no no judgement...

me "is he your only child?"
her "yes...you know I am old 41 and with all the genetic risks...we cant"
me "huh...my daughter was born with Down syndrome (I told her 2 seconds before this conversation) and although we did not think we could have a Maddie...we are so glad we did"
her "well you know"...

but here is the thing -I do know...but I want to say the hell if I do know...do I know the risks...yes I was brought up to speed very quickly with a 5 month ultra sound...I was the chick who did not think it could happen...would I choose the early tests to identify a "risk" "issue"...no I would again forgo that test...why because I wanted another child and I felt my family was not complete...Maddie completed our family...that is as plain as I can say it...but this is where it gets uncomfortable for others...I would take away her Down syndrome...because that would take away most of her health issues...and it would take away the worlds ignorance towards her...a ignorance that is far worse when people hold there opinion in there eyes...but would I do this all again...get pregnant...because my family was not complete...yes I would...and would I even go through the depression and self loathing just to have Maddie in my life and for me to be her Mom...yes I would...would I change the way I walked this journey...no I would not...I would still cry, worry, bitch, and be me...because that is who I am...there is no "right" way to do anything...I may worry about other things that now I see are more important...but I would do it again...because the love and satisfacmtion I have for being a mother is one that I never knew I could have...when advocating for Maddie I find it comes in so many venues...so many people have a preconception of what its like to be us...but I think it is unique to each family member...

new her "i overheard you say you have a child with Down syndrome"
me "yes"
new her "I have a cousin..she is 60 years old...she is amazing...I would love to meet your daughter"

and there is the other side of society...acceptance...excitement that Maddie is in the world...sharing...not judging...but what it gives me is -hope...that Maddie's life will have the purpose she desires...one that is her own...the other day on pintrest I pinned my first idea for Maddie's room...and it took me back to a memory of one I have of my Mom...how she loved decorating my room and she bought all this beautiful furniture and bedding...not asking me once what I wanted...and as a child I was resentful about it...but reflecting back it was her dream...it was her living through me...and now I adore it...I understand it....and because Maddie was born with Down syndrome does not mean I cannot live through her...I can get the little girl bedroom I always wanted! I understand now I can mother my daughter like I always dreamed ...again my journey...

Wednesday, May 15, 2013

update of sorts...


Tracheoesophageal fistula
Classification and external resources










A tracheoesophageal fistula (TEF, or TOF) is an abnormal connection (fistula) between the esophagus and the trachea. TEF is a common congenital abnormality, but when occurring late in life is usually the sequela of surgical procedures such as a laryngectomy.

TEF the bane of our existence...the "issue" that we were told was a non issue....that if this is the worst thing that was "wrong" with Maddie...it was an "easy" fix...yeah...no it is not...no it is not over and it is not "fixed" per say...in a round about way it has NOT been addressed...the TEF is the cause of what is "wrong" with Maddie...something that should have been diagnosed at birth...instead it was diagnosed 3 weeks ago...

Part of the Areodigestive clinic is seeing a pulmonary doctor...a doctor that we should have been seeing since Maddie birth...I am numb...surprised....confused...saddened and embarrassed that we just learned of this new diagnosis...Maddie was diagnosed with Trachea Malaysia....it is when the trachea is oval flat instead of round...it is described as floppy...she does not have the strength to cough up mucus...so in turn....when they scoped her lungs they found a lot of mucus...in the lungs, stomach, on and in the trachea...there is no quick fix...so Maddie has to do "treatments" 2x daily that consist of a vest, hypo-tonic mask, and inhalers...this helps move the mucus and encourages her to cough....mucus is not good...it can grow lots of bad stuff that can hurt the lungs....this "treatment" is helping prevent bronchitis...we are not sure how long she has had this issue with mucus or how much damage it has already done to her airways....so we do a ct scan in a couple of weeks to hopefully have more answers...yes she will hopefully grow out of this...no there is nothing they can do to "fix" this...just take measures to prevent blockages to the airways and branches of the lungs...


Maddie had her tonsils and adenoids removed 14 days ago...it was by far her worst surgery and recovery...but in the end it was for the best...I see a change in her sleeping...I see a change in herself being more comfortable...she did not eat for 6 days and very limited drink...she lost more then 6 pounds...and I thought we had made a huge mistake...but in the end she was amazing...her body healed amazing....she was on the verge of going back to the hospital...to the next day eating and drinking like she had starved herself for 6 days...I cannot blame her...I am just so thankful it is done...we stayed a total of 3 days in the hospital and I am glad we took the slow approach because I think it helped her heal faster in the long run...


Maddie still has esophagitis so they switched her medications and are watching her a tad different then before...still trying to be proactive to a closing esophagus...we switched GI doctors and I am not sure the change is permanent...it was just more convenient to see this one for time being...competition is good...right!


This is where I start questioning...why we even go to the doctor...crazy...maybe...selfish....probably... but there is part of me that wants Maddie to be a normal little girl without medications, oxygen and treatments...it becomes alot to handle as a mother to be constantly worrying about medications and treatments and time to do everything....I want Maddie to learn and grow...to play and do things in her time....but instead she is dictated by other things...I just want relative healthy...I just want a doctor to tell us that she is good and that she will live a long productive life...I am trying not to complain...I really know there is worse health issues..really I do...I am thankful she is alive...I am thankful that she is my daughter and that I get to fight for her...I just want there to be simple...