Because My Little Lady is Two

Little Lady, On the Move, On the Move, On the Move!!

Little Lady is rolling around the house getting into things she shouldn't be, just like a typical toddler would. I am sure one very happy mama right now!
I guess the difference is, that if she were a typical toddler I would be telling her "No" when she knocks my picture frames over. But right now I am just so glad to see her intentionally mobile, that I don't want to say "No" to her.!

Wobbly Legs

Little Lady worked so very hard at physical/occupational therapy today. She stood and stood until her legs were wobbling and trembling. She even had muscle spasms after she was done. She loves using the walker, even just as a standing support. The one she's been practicing on offers her many places to put her hands and utilize her weight shifting.
I think she earned herself a nice long bath and a nice massage afterward.
She's such a trooper!

Here's Little Lady getting prepped for a new round of KinesioTaping.

Movin' & Groovin'

Wow!!! This Little Lady is a movin' and a groovin'! What fun!
While I've never doubted that she would eventually walk, (whether assisted or independently), I never thought that she would crawl. Well, now she's starting to make me think otherwise! Lately, Little Lady is rolling all the way over, scooting on her side, and even starting to push up independently on her arms and elbows! It's so incredible to watch her progress! She has gotten so good at her side scooting method that tonight she scooted all the way from the rug she plays on to the hallway. That is the furthest she's ever gone. And she did it pretty quickly too!! SO EXCITING!! Way to go Little Lady! Mommy is so proud of you!

Only about a week ago, she scooted across the room to get to a bowl of water. Once she got there, she did what a 'typical' child her age would do, she got into it and made a mess!!!! Why is that so exciting? Because it was her first time doing that type of thing!

In only about three more months, Little Lady will embark upon her adventures in preschool. It will be a unique and interesting process for all involved, but I am just so excited to see the growth that she will experience from being in a preschool setting and interacting with other children her age. I see big things happening soon!

One Supported Step At a Time...

"Perseverance is not a long race. It is many short races one after another." - W. Elliot

The quote says it all. Every. Single. Day. is a short race. And then another the next day. And again the day after that. Some days have multiple races.
There was a time in my life, not very long ago, where I'd wake up in the morning and convince myself to go to the gym.

Now, I wake up and convince myself to take my sweet daughter to physical therapy and occupational therapy, where I will be reminded (again) of what she's not yet capable of. Of how much work we still have ahead of us. 

I wake up and convince myself that going to therapy is better for her than going to the park and swinging, or staying home and snuggling on a rainy day. 
I wish for someone to convince me that it's not a necessary evil.
This never happens.

I fight this battle every day. I hate taking my daughter to therapy. I hate doing therapy at home. I hate that when other toddlers are playing, she is being twisted and stretched and forced to move in ways that are unnatural to her. 

I struggle with these obligations. I  consider "taking a break" and fight the guilt that consumes me wondering if that would be detrimental to her progress. 

And then... she has a day that is beautiful. She goes to therapy, and smiles the whole time. She actively participates, and never cries or protests. She WORKS SO HARD! And all to take some steps in a device that is holding her up. Terrible? Or beautiful? 

Both.

And then I realize... it's worth it. She'll be okay. I'll be okay too.

"I am a parent of a child with special needs. My life isn't glamorous and it is full of hard work everyday. I go weeks before I realize I need a break. But in the end, the gifts of joy I receive with just an inch of progress - are quite extraordinary and in these moments I know we can do anything." HOPELights♥

Holland is Lovely

It can be hard to explain what it's like having a child with special needs to another person who hasn't walked in those shoes. This essay kind of puts it in perspective.
And for the record... My journey started in Italy, I've been there twice. Then, on my third trip to Italy, I landed in Holland. Now I have one foot in  Italy and one foot in Holland. And they are both SPECTACULAR places to be. I wouldn't have it any other way.

 WELCOME TO HOLLAND

by
Emily Perl Kingsley.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Little Lady at the Neurologist

Little Lady had her first Neurology Consult today... 
He was a nice doctor with good bedside manner. He offered to do an MRI but stated that it was probably not imperative because she's showing regular progress and gaining strength. However he did say that it's quite possible that there is a neurological aspect to Little Lady's AMC because her left side is substantially weaker than her right, and one weaker side (especially left) typically indicates something neurological.
He also informed me that MRI's do have a tendency to sometimes be misleading, especially in cases such as hers. Also, having an MRI done would not change the course of treatment that she is receiving, nor would it tell us "why" she has AMC.
Because of these reasons, it would basically not make a difference one way or the other, we will not get the MRI done at this point. If in the future she stops progressing and gaining strength, or we see a need to re-visit this decision, we will.