Wednesday, February 22, 2012

Evolving. Well, maybe. If the baby doesn't cry too much.

That's what I have to do.

I've been gone for a while, I know. For the past four months, I've been wandering the numerous states of Baby Land, crossing in and out of Down Syndrome Jungle, making brief forays into Diaper City (and its various smells, textures, and unknows, of which there are several more than one would initially assume), enjoying Bath-Time Circus, and spending much too much time in Breast-Feeding Desert, on my way to a much happier place known as Formula Gardens.

I have been living my life. As sometimes happens, if you don't watch out. Life will just decide for you.

It seems that I now know exactly what I will do with my life. And thus the title and the purpose of the blog seem a little contradictory to what my life has evolved into.

I have become, first and foremost, a mother to my baby, but also a mother to a child with Down Syndrome - a professional researcher, a singing maniac, a physical therapist, a nutritionist, a Mozart enthusiast, an occupational therapist, a doctor, an advocate, a speech pathologist, an educator, a chemist, a massage therapist, and many more things to help this tiny life in my (no longer exercised from lifting a wine glass, nor tanned from golfing) arms take off and prosper. To help her lead her life, instead of having to always follow someone else.

So like any other mom, just with an added twist of a specialty, and a little more active raising of my daughter thrown in the pot.

But does my full-time specialty motherhood have to signify the end of this here blog? I don't think so. I think it should be a sign to make a change, a divide, a spin-off, a new blog dealing with all of the sprinkles that get willy-nilly thrown on the cone when the cone has a baby cone with an extra 21st chromosome.

Another blog? (And what's with the ice-cream metaphors?)

Yes, I think it has to be so. (No idea.)

See, not once have I been sad or needed support because of the little something extra in my babe's karyotype. I haven't needed comforting (I got my firstborn out of the deal, didn't I?), or for someone to tell me it's not my fault (any idiot knows that babies with Down just happen, as a quirk of nature, right?), or for encouragement on this 'difficult road I've chosen' (Yes, I chose not to abort, but I didn't choose for my babe to have Down Syndrome, so what exactly are you referring to anyhow?), or for anyone to tell me what a saint of a mother I am (because I'm not. I'm pretty sure babe's first word will be 'fuck' and it will be horrifying to everyone and completely my fault [but I also hope that babe, without being asked to, will always give love to the homeless and will also then reap credit for that]).

However.

I have been very overwhelmed by the difficulty in finding decent information (especially some that isn't the complete opposite of some other information) in a situation where the state or the government isn't in charge of what happens in regards to my babe's care and education (yes, we're still living in Mexico), a little put off by how easily God makes an appearance in discussions about Down Syndrome and deciding to have a baby with Down Syndrome, somewhat mystified as to how uneducated most some people, even some very close to me, are regarding Down Syndrome, and how awful and untrue the prevailing perceptions held by many of people with Down Syndrome are.

So I think I have to change the world. One stupid, fucking stereotype (read: one wrong impression) at a time, and for that I'm going to need a whole other platform, one that will involve a lot more preaching, a little less swearing, and a lot more love.

For this little individual who is, and always will be, my daughter. My Vikinga babe and her three 21s.

21+21+21=?    


5 comments:

flutietootie said...

My sister who is now four years old was also born with Down Syndrome. I care for her when she is not in school and I agree with you it may not be easy. There are some times when it can be overwhelming but mostly full of joy. Two bits of advice I can give you has made my sister who she is today.

1. Make sure every moment of every day is full. The less time she has idle, the higher functioning she will be.

2. Fight for all the services you can get her. The government has a lot to offer but will only give them after a good battle.

If you have any questions or want advice, you can visit my blog:
http://livingwithdownsyndrome.blogspot.com/

Although it is like a diary of my sisters life, I would love to help you out. I have learned a lot from my sister.

CrazyCris said...

You're back!!! :o)

Congratulations on your first born! I'm sure you will fight for her tooth and nail, she will be lucky to have you as her mom! :o)

Angelina said...

Welcome back, I was thinking of you and your little Vikinga bebe. Your journey began when you first were aware of her, she is a precious gift who will be a constant source of surprise to you both.

I can't wait to read about her progress, her smile and laughter.

Angelina said...

Welcome back, I was thinking of you and your little Vikinga bebe. Your journey began when you first were aware of her, she is a precious gift who will be a constant source of surprise to you both.

I can't wait to read about her progress, her smile and laughter.

Lisa-Marie said...

I hate people who use that language, and infer that you are taking on some burden because you kid has additional needs. A person is a person, a baby is a baby.

They can fuck off!

I'm glad you are enjoying your time with your lovely wee girl. :)