Terminology, Labels and Phrases

Terms used to describe my kid...and my other kid...

Ordinary - no special quality or interest; common

Normal - usual, common type, natural, regular, typical, conforming to the standard

Different - not alike in character or quality; unusual,  not ordinary

Special - a distinct or particular kind or character

There are words that drive me crazy! The above mentioned are some...they all have negative undertones regardless of how the person is meaning them to be...how about just describe Maddie or Max as....

Maddox -sister, daughter
Maximus -brother, son
better yet for both of them -HUMAN...

Max is often described as smart or interesting...negative perhaps...
Maddie is described as special or different...negative perhaps...

in the hospital this past week Maddie and I were watching Frozen for the 134th time and I picked up on when Ana told the short bald dude asked if she was just "ordinary" and then her guy friend said she was "ordinary" and then apologized that he did not mean it as an insult...and that got me thinking about how we use words and how we receive labels...for example I do not see Max as "normal" I see him as "special"...I do not see Maddie as "special" but as "normal with extra zing"...when someone comments that Max is like any other 8 year old I am offended...if someone comments Maddie is like any other 5 year I ask what they have been smoking...my point is that labels and descriptions can be offensive to any parent...we have an idea of what we want or wanted in our child...that we created...we want to think our children are an extension of us...with that when that extension comes out different, special, unique, or ordinary we can get a little confused...my emotions and frustration truly are all over the place with labels...when someone comments on my child...very rarely do I want to hear it or know the label assigned to my child...whether it is white, male, female, nice, happy, smart, or slow...none of them sound good enough...

I am not saying I do not use Maddie's label to our advantage...I do...when going through a National Park we have pass that lets us in for free...all because of an Extra Chromosome...a label...its funny they ask who the person the pass belongs to?? we all point to Maddie...and they say oh ok! Thanks!...am I offended...nope...thankful I get in for free...

I guess it is a decision whether to be offended or not...personal choice...so from now on I am going to refer to myself and Maddie as a 'Basic Bitch' the urban dictionary says its just a extra regular female...I think that is classic! I am still working on what Chad and Max are best described as...

then there are the clumps of words that drive me crazy...the phrase that kills me is....and are continually said to me or about friends...

"you are doing it right"

WHAT does that mean????

I have not in my 40 years of life done anything "right"...just saying...I am the stumble in and hope for the best...Chad and I have done everything backwards...the next phrase..."they are good people" HUH! what is that..."good people"...do you live with them?? do you really know them?? because I am thinking you do not...people are HUMAN!! sometimes they cannot do it "right" because your "right" and their "right" do not line up...it is simple...really...stop labeling everything...remember that HUMANS are all "different and special" as well as "normal and ordinary"

soap box...perhaps!!

Eyes...

Maddie wears glasses -obviously...people often asked me how we knew she needed them...it was the simplest of things...her pediatrician commented during a routine visit at about 9 months old that she needed to see the ophthalmologist...so off we went...next was finding glasses that fit, stayed on, and were VERY durable; a challenge but we found them...funny they are from Walmart...best glasses so far $50 and full coverage on anything and everything that a kid can do to a pair of glasses...Maddie does not mess with her glasses...she needs them...plain and simple...so about 2 years ago our local ophthalmologist got it wrong...A teacher mentioned that she did not think Maddie can see with her glasses on!

Oh my mommy guilt!!

So I offended the doctor and got a second opinion...yep he was wrong...so we began seeing a regular eye doctor...love him!! He was really good with Maddie! So we did not return to the ophthalmologist...

fast forward to March at our annual visit to the Down syndrome clinic they REALLY stressed that we needed to see the ophthalmologist again and we needed to see the one at Children's hospital...well that means another trip to Denver...so I put it off till the summer and when we had more time...mid June came fast and off we went to see the doctor...I kept thinking I should cancel and that it was a waste of time...I was annoyed that it was another visit...so trying to be positive I began to think of the cute selection of glasses they would have!

During the initial exam Maddie was a ROCKSTAR!! Seriously she is so good at it all; matching the pictures, letting them look in her eyes and so on...then the ophthalmologist began her exam and the dreaded silence took over...I know this silence...the one that comes before a diagnosis, a test, and it always results in -more...extra...

The doctor turns to me and says "has anyone ever told you that Maddie has fuzzy retinas"

huh! What!! Um no! I start to laugh...because this is Maddie! In a nut shell...

we go in for glasses and come out with a MRI...after pictures and ultrasound on her eyes...Maddie has a problem...and we do not know what it is...so 10 days later after insurance gave the ok the MRI confirmed that Maddie has to much pressure in her head and is causing her retinas to be swollen...

hence fuzzy retinas...

This is not optimal to say the least...am I relieved that it is not a tumor?? obviously...

but really can we not just go to the doctor and have a "looks great! We will see you in a year" nope we get the you get to go see the neurologist in a week..because it is "urgent"... WTF...if something can go wrong or different or challenging...it will happen with Maddie!!

this past week Maddie had her Spinal tap or lumbar puncture which ever you want to call it...and it confirmed that Maddie has to much fluid in her brain (pseudotumor cerebri, idiopathic intracranial hypertension) causing pressure on her optic nerve...causing her eye sight to worsen and possibly go lights out all together...they drained the excess fluid and she is now on a pill twice a day that will hopefully keep the fluid down and the pressure off her optic nerve...

to say i am ok with this is a bit of a stretch...while we were waiting to be released by the hospital one of the doctors came in and said that we should be relieved that we are not being seen right away by the neurologist team because it means our child is not as bad as another child...i am gonna be honest with you..i was not relieved...i was not happy...Maddie was not happy...she has been put under anesthesia over 20 times in her short life...she has had as many surgeries and/or procedures done...and this one had to do with her brain...lets face it the only low risk, not a big deal surgery/procedure is done on someone else child...not your own...

the up side of this is that Maddie's sight may improve...so new glasses!! the not so upside is that we have gained two more specialists that include monthly visits to Denver until further notice...Maddie of course is amazing...but her little body needs a break!!