BELIEVE

Well, hot damn, do you BELIEVE your eyes!??  I'm BLOGGING!  I've had so many people ask me why I haven't blogged in a while.  There's really no excuse...so here I sit, with Billy by my side, at 9:54pm on Wednesday night, Michael Jackson blaring in our bedroom, writing to you all.

The last year has really been surreal.  I stopped blogging after my mom called me out on several occasions after I'd been negative in one too many ways in my blog.  I'd been going through a difficult time, comparing Emily to others, and in general, just hating everything that came along with T21 (Trisomy 21, or the 3rd copy of the 21st chromosome).  Are there times that having a baby with Down syndrome sucks, ABSOLUTELY.  But, with that being said, I would not ever, ever, ever change my sweet Emmie Kate for the entire wide world.  She literally runs my world.

In the last year, she has decided to actually develop a personality. It took a little extra time for that to come about, but let me tell you, she is all sass, just like that little sister of hers, Lilly.  Emily has learned to crawl like a mad man. She can get wherever she needs, in a hurry.  We bit the bullet, like most typical parents, and screwed the baby gates into the walls to keep her trapped upstairs or in the kitchen...much to her dismay.  We are currently working on getting her to stand and it's like most things, a constant battle.  Physical therapy is no walk in the park.  On Thursdays, I bite the bullet and endure an hour of crying.  Working on standing, or any other type of "work" our therapist deems important immediately results in crying.  Next time ANYONE decides to get me a gift, make it be Bailey's so that I can add it to my 8am coffee for PT.

We also go to Occupational therapy every Monday which is much more fun.  It requires Emily to stack blocks, pull doggie toys, push buttons...all which seem normal to the typical parent, but given the fact that Emmie was basically born without muscles, these items are like obstacles.  This therapy is at 10am, so mimosas would be a little more appropriate.

I have asked our Early Interventionist (yes, there are like 1,000 names for the 1,000 people that help run Emily's life) for speech therapy.  We will begin that in the fall.  So, basically, once the school year begins, never, ever, ever call me and expect me to be able to do anything.  PT and OT once a week and speech 2x/week...oh, and we are on the waiting list for aquatic therapy (supposedly, it's good for those lazy joints and muscles). I'm busy, our babysitter is making a small fortune, and my head is about to pop off!

It's crazy living this life.  I still sometimes feel like giving God the bird, but hey, He gave me what he felt like I could handle.  My husband busts his ass working two jobs so that I can stay home, although I have absolutely no idea how I would work right now.  I occasionally walk into our shed and look at the melting crayons and dried up glue and wonder if I'll ever head back into teaching.  I long for the adult interaction and the fulfillment of teaching youngsters new things.  When I left the world of teaching, it was bittersweet. I absolutely LOVED the kids I taught when Emily was diagnosed and their parents were so wonderful to me, coping with the days off I took and all the appointments that came along with growing a little special needs baby.  I miss it daily.

The other thing I miss the most ever, ever, ever is Charleston.  It's a pain deep in my heart that I don't think will ever go away.  Our friends there were family.  Period.  They will always remain family and it absolutely pains me that I've missed so much in my "family's" life lately.  If the time ever came about, I am 99.9 % that Billy and I would move back.  Right now is not the time, but one day, it just might be.  Both of our children were born there, and we have deep memories that will never fade. Our family in Georgia is literally the best.  I don't know how we would ever do it without every single person.  I'm always calling someone to complain or ask for advice and they're right there.  We're all in this together and EK has brought us all closer together than I could have ever imagined. Family means to world to us, and I'm pretty sure that without them all, I would have suffered a mental breakdown by now!

Having a child with Down syndome will never be easy.  I look at our basement every time I go down  there and think "this will be Emily's house"...will it?  Like really?  Will she ever live alone?  Will we travel to Italy? Greece? Bora Bora? Our "Bucket List" places?  All my friends tend to think in the real world and reassure me that she will live independently, but really, have you all done the research?  No.  Most likely, she won't live alone.  Bring on the $30,000 basement reno.  My baby will forever live with me...but you know, if she's as sweet as she is now, I'll take it.  I could rock her for hours and hours and hours.  Having a T21 baby isn't as scary as it seems, and I'm beginning to realize that, slowly, but surely.