Facing Mortality as the Mother of an Only Child with Special Needs

4 months from today I will turn 40

It's not a number I am afraid of or a milestone I don't want to hit.
There will be a celebration but with the excitement came a huge reality.

I'm going to be 40...my mom is 61...the people I have as my
"omg in case something happens to me you get Annabelle"
ARE ALL MY AGE... WHAT NOW????

When you begin the adoption process it's for several reasons - you don't want to be an "older" parent - my dad died when I was 26 (he was 70) -  you are not married - * you want a little girl for sure 'cause bows and smocked make more sense*

I am hopeful but at this very moment I do not think Annabelle will ever be capable of  living alone. She will always need some sort of assistance. I never really thought she would be an only child either - my plans were always to adopt again at least once but with 2 additional adoptions falling through it just never happened...So what now?

Where do only children with special needs go when they are alone? I'm not anticipating this to happen for quite sometime but - it's a terrifying - devastating thought that quite frankly has had me in tears and on valium for the last week - I've googled questions looking for answers and found nothing - Is my only option some sort of long term care facility where she'll live out the remainder of her precious life in a room and at the mercy of others? How do you march on with that thought constantly in the back of your mind?

Is there any true preparation for something like this?  

Stay Calm

and 

Psalms 18:32 on

We wish you a Merry Christmas!

Can y'all believe ANOTHER year has come and gone?

I don't know how time flies and yet seems to stand still at the same time...

This year was crazy, fun, hard, ever changing and we celebrated every bit of it!

I thought MY Christmases were a big deal in my day but let me tell you these kids aren't asking for a plastic tea party set, a cabbage patch kid (although i really wish they would)

or please, please can i have one of those cute phones in my room???

Not these kiddos ~ Christmas 2012

Trampoline - Paintball Mask - Helmet Camera

Ridie Toy - Halo 4 - Nike Sweatshirt 

but the SMILES on their faces were worth every toe of my own I have to paint all year!

 

I think this is my favorite tree of all times!

It was beautiful (thanks to my mom and her mad decorating skills)

and loaded with perfectly picked presents 

(they gave me a list)

but my favorite thing about this tree is all the love and laughs that surrounded it..

get ready for company...yes, I ironed the comforter - hahaha

 

boys, boys and more boys

 

(that's my sweater - not my belly ;)

then it was off to the 2nd Christmas celebration

Annual Family Dinner at The Hilleshiem's

good food ~ great fun ~ lots of drinks ~ cute babies!

It is one of my favorite things about Christmas!!

 Annie scored a soft puppy that looks just like Charlotte

and Mary Cole is wearing the cutest shirt my mom made!

 

She's saying "thank you Nonnie" for her puppy!

Legos from GrandDennis

 

Puppy from Nana and Pops

 

Indoor trampoline - JUMP JuMp jUmP!

 Priss LOVES a puppy!!

be still my heart...

I think it's gonna get lots of use!

 the cayutest face and her 9a.m. candy necklace!

Wrap it up and put a bow on it!

Ridie Toy - she said " I have been missing dis toy foreber"

Mary Cole got this for her birthday so Annabelle has been NEEDING it!

Puppies, Ridie Toy, Talking Doll, Art Easel, Legos, Trampoline

Twins with Bunk Bed, Baby Doll Carriers

I think someone had a VERY good Christmas!!

 

Let the gift ripping begin

can you tell who got the mask and who got Halo 4?

(notice xbox controller in hand)

 he's so cool - til he gets hit by a paintball

 

no words are needed for this one 

I am pretending that is just a black zip up

if i see no gamecock it makes it not one

 

someone found the distortion button on my camera

and then it was over....

so MERRY CHRISTMAS from our house to yours!!

May you have a happy, healthy and prosperous new year!

(i tried to scan the Christmas card which didn't work so here's the picture we used)

back to the drawing board....

 hmmm....should I be concerned that they didn't spell our last name correctly?
is that a "there's your sign" sign?

 

this poor girl is

poked and prodded

and keeps on trucking...

A little pre procedure reading with Grannie

 

love her precious face

still not awake

 

what y'all doing to me?

Annie has been getting more independent again (I think she feels more safe at homeschool) and wants to do things but we have to follow her to the bathroom especially because of her drop seizures - she would fall off of the toilet with no muscle control so our neurologist thought maybe a lumbar puncture would give us some answers - apparently there is a folic acid that can be medicated if that were the case so off we went to MUSC poor thing while she was under they also took like 8 vials of blood to look at some other things...sadly, the spinal fluid (i know it even sounds horrible) came back negative so we are back to the drawing board! God love her little self!