Why don't you just admit it?

Why don't you just admit it?  It's so obvious you feel sorry for me. 

Just a few "small" things irked me this past week.  Last Friday was crummy.  I just couldn't make myself be in a good mood, and usually there's a few go to things that cheer me up.  However, they just weren't working.  At the end of Friday I sat down and kind of laughed.  The best part of my crummy Friday?  That none of the things working me into a tizzy had anything to do with Down syndrome.  I mean, Emery is amazing.  She can make me smile no matter what is going on.  Now, she's kind of in a stinker mood herself lately.  Telling me no and such, but that's okay.  I'll take it.  It means she's 2! 

Anyway, two incidents just rubbed me the wrong way, and here I am days later still thinking of them.  Some people are just insensitive or lack tact, or maybe they lack general common courtesy.  Others are just socially awkward--trying to be nice, participate in a conversation, make connections, when instead just further alienate because of absurd statements.  I just want to tell this woman to hush.  I wish she realized how uneducated her comments make her seem.  I am the first to admit the world of Down syndrome was overwhelming and unnerving when little lady was born.  But I took my lead from other, more experienced moms.  I listened (novel idea, I know), and picked up the lingo, the pc terminology.  Being politically correct is an entirely different blog post that maybe one day I'll brave, but I'll save that soapbox for later.  Okay, back on topic.  I just want to scream "I see the way you look at me when I share Emery stories."  I can see her wheels turn to think about how old her child was when he reached these milestones.  Great, your kid was talking in full paragraphs by this point.  Was he fluent in French too?  Because if he was, then I'd be impressed. 

It can be hard to see other 2 year olds and compare.  Don't tell me not to!  We all do!  Everyone does.  It's in our nature.  I don't see it as a competition; part of me feels like if I stay hyper vigilant of her delays, then I can stay on top of them.  Okay, she takes a swing at you if you are not paying attention to her when she demands it.  Nope, no one else is doing that anymore.  So, we'll work on it.  We'll focus on some socialization activities. 

This weekend while at lunch I caught a grown woman pointing at my daughter.  She couldn't have stared any harder if she tried.  The way she "whispered," while pointing, "Look, right there, that little girl, she has Down syndrome," really struck a nerve.  She gets props for labeling her disability properly.  If she had said "that little girl is Downs," like I've seen before I might not have kept my composure.  I wanted to stand up and and say "Yep, she does.  Problem?"  The way she exaggerated each word was like I was holding an escaped monkey from the zoo.  She and her husband stared the remainder of our time there, and their heads moved in warp speed to face the opposite direction as we stood to leave.  I couldn't figure it out.  Some days it doesn't bother me when people stare.  I figure they have their reasons.  I was taught not to stare, but that does not mean they were.  It just didn't feel like a positive encounter.  I mused over the lunch gathering to decide if Em had done something that might have drawn some attention to herself.  Did she scream or throw a tantrum? Nope, unlike other children there for lunch, she mostly sat in her seat and ate her green beans, broccoli, rice, and chicken.  Did she throw her things? She did miss the table once when putting her sippy cup back, but that's not unusual.  Was she unpleasant?  Of course not.  She waved and said hello as people passed her.  She gave an unprompted "thank you" to the waiter, at an appropriate time I might add. 

I don't know why it bothered me.  Maybe because I wanted to know why she cared so much.  Did she have a good enough reason?  I'll never know.  Often times in the quiet I think about how we are perceived by others.  Our parents?  What do they think of us? Of this journey?  Do they feel sad for us?  Are they proud of us?  They have not lived this experience as parents, as I have not lived their grandparent experience.  If I could be a fly on the wall!  Do our friends pity us?  Our lives as parents?  It's bizarre to be living a lifestyle that you can only partly relate to others.  I suppose that could be true for many situations though.  I do not know what it's like to be a single mother, to be unemployed, to have a prenatal diagnosis, to have a 2 year old that has had multiple surgeries.  We've met many amazing people since Emery was born, but no one in our lives before totally gets it.  And that can be tough.  The toughest part is wondering if people have questions but are just afraid to ask.

Just for the record, I'd rather you ask.  Whispers can hurt! 

My how the time flies!

“last night was the best sleep Em and I have had in about 5 days, so here's to hoping that her antibiotic is finally starting to work. at least her fevers hovering near 104 are gone :)”

A year ago today that was my facebook status.  I could hardly believe it when I read it myself.  Last fall and winter was brutal.  My sweet girl was sick constantly from the end of July to about April.  If it wasn’t an ear infection, it was a sinus infection.  And if it wasn’t that it was unexplainable HIGH fevers.  That was the hardest part.  The not knowing.  I could understand the progression from a virus to a full blown infection; in fact, it didn’t even surprise me.  But the high fevers and constant vomiting and losing precious ounces were incredibly stressful. 

We didn’t feel like we had many choices.  Emery only went to daycare 2 days a week.  It was hard to fathom two days a week wreaking havoc on her system.  But where else could she be getting it from?  The kids in her room were definitely the goopiest, greenest snot drippers I have ever run across, but I tried to believe things were being handled appropriately at daycare.  So my little lady only went two days a week, and she often spent the rest of the week recovering from said illness.  She almost never had to miss a day.  It was just a constant crummy feeling for her. 

In October we decided to pull her from private therapy.  I was bummed initially; however, Emery was almost always miserably sick the day following a session.  I loved the place she went.  Her OT was exceptional, and Emery always worked so hard.  Maybe that was the problem?  Maybe she was working too hard?  So, we pulled her.  It was a tough decision, but we thought exposing her to less potential germs was probably beneficial.  Plus, private therapy isn’t cheap and neither is paying a pediatric copay every 5 to 7 days, followed by lab, radiology, and pharmaceutical bills.  Yikes. 

I worked so much of last year on very little sleep.  A few hours here or there.  Many nights holding a crying baby or a sweaty baby.  There was rocking, swaying, singing, cool rags, and breathing treatments galore!  It wasn’t easy—emotionally or physically.  All of this on top of working full time and practically being a full time graduate student (2 classes a semester).  Needless to say much of the fall and winter is a blur.  I couldn’t wait for it to be over. 

It’s fall again.  I have to admit I’ve been a bit anxious about it.  I love fall; it has always been my favorite season.  So far, Emery is doing great.  One day of fevers, this past weekend.  The best part—it didn’t grow into something more.  It was just a snuggly, lazy Saturday with a low-grade temperature.  We survived that day.

When we pulled Emery from the daycare in April, I was feeling very overwhelmed.  The pressure to make the best decision for your child is exhausting.  I don’t know how many times I would go over my pro/con list.  In the end, I felt that the one thing I knew for sure was that I would not regret having my entire summer at home with her instead of sharing her with daycare “teachers” who quite possibly just didn’t love (or even get) my kid.  It was the right choice.  Easily.  I trusted my instinct.  I had faith and leapt.  It took almost no time before Emery was totally well.  She hasn’t seen the doctor since mid-April for a sick visit, which was before her last day at the center.  Her breathing treatments, which were at one time 5x a day, are totally gone.  No antibiotics, no asthma medication.  Even her reflux seems fine.  You know what else I did?  I gave Emery a summer break from early intervention “therapy.”  She hasn’t had any sessions, visits, or special appointments all summer.  It’s been amazing, kind of like having a “normal” kid.  I know the pendulum can swing again.  I’m ready for it this time.  It won’t catch me by surprise.  It won’t rip my heart out to work on homework as my feverish angel sleeps in my lap.  Nope.  This fall, I get to be just mom in the evenings.  Sure I still have to work, but this is why I busted my tail.  At 2 my daughter will never remember last fall’s many nights where I had to juggle school and home.  At 2 my daughter has a mommy who can focus on her from the time she picks her up at her new daycare until the time she crawls onto her pillow and drifts to sleep in her room.  I don’t have to worry about the nasty things the center’s employees will say about my daughter.  About how her behaviors.  Funny how they thought she was the problem.  Clearly, they got it all backwards. 

Yep, this fall Emery is going to accomplish even more great things, and I’m going to be there every single step of the way!

The girl's got moves...

We went to the zoo tonight.  It was WILD WEDNESDAY.  You know what's wild about Wednesday?  The zoo stays open until 8, instead of the usual 5.  Woohoo!  I don't find our local zoo to be that exciting, and quite frankly neither does my girl.  It's definitely for slightly older kiddos, and I'm sure when she's a bit older, Em will love to go weekly.  She's going to love running, jumping, squealing, and twirling.  Now, I do take issue with the gigantic sand boxes.  I really have a hard time with the idea of Emery crawling, sitting and sifting sand that is left open for feral cats or wild animals to use.  Gross!!

Anyway, I wish I had brought my camera tonight.  Standing by the penguins we could hear music.  Emery is always the first to hear music anywhere we go.  She'll start dancing, and I begin to listen to my surroundings.  Of course that's when I hear it too.  Some song off in the distance.  Tonight, as we rounded the corner and entered the plaza area with the dinky little cafe, the music grew louder.  Three belly dancers were playing finger cymbals and dancing.  They were passing out various instruments to some of the children.  Emery insisted on having part of this!  She spent the next ten minutes walking around the dancers, tapping her fingers together, swishing her tutu, and banging on a drum.  Oh she was in Emery heaven!  She couldn't have been more in her element or happier. 

I cannot wait until I can get her into a dance class.  She loves daddy's IPod and you should see the girl raise the roof in her carseat.  Hysterical!  Her three favorite songs currently are Justin Bieber's "Baby," Beyonce's "Single Ladies," and the Beatles "Twist and Shout."  She definitely has eclectic taste.  I've got just a few days left before heading back to work, and I'm going to make it my mission to catch her singing "Baby" on video.  She does the cutest "baby oooooooohhhhhhh" with the sweetest scrunchy face.  Man, I'm going to miss my days with her. 

I could not be more proud of my daughter.  She faces many challenges in her future.  We all do; life is constantly providing opportunities to grow and flourish and rise above.  There is no doubt my daughter can learn.  She proves that to me every day.  She is 28 months and is in the early stages of speech.  I think she is easy to understand, but I do have that mommy ear.  She says or approximates well over 60 words.  She knows close to 100 signs.  She answers questions; she chooses her clothes and shoes in the morning.  She follows directions, as well as a sassy 2 year old will.  She identifies things she sees, in books and in real life.  So, no, there is no doubt for me.  My daughter is capable of learning.  Some things will come easy---like using the remote to turn on the tv in my room in the mornings after showing her one time.  Some things will take longer and more practice, such as walking did.  Isn't that all of us though?  It takes me longer to memorize historical facts than it does to solve a calculus problem!  So, Emery might face a few more challenges than some other kids, but I'll always be in her corner.  I will see to it that she is just as proud of herself as I am of her!