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...