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.

What Did I Do to Deserve This????

When I look at Little Lady, I think to myself "Why did God give this to me? What did I do to deserve this?". 

But not in the way others might think. I don't see what's "wrong" with her. I don't feel sad that she was born "different". I think "Why did God see me WORTHY of this amazing blessing? What did I do to deserve such a wonderful source of constant joy?" This little girl, and everything she brings with her, has completed my heart. 

In the words of my friend Peg, Little Lady's DiffAbility is The Sweetest Gift. I feel so honored to be a part of this elite group of people and their families. SUCH JOY! 

I hope that nobody ever see's my daughter in her splints or braces and thinks "poor little girl". Or see's a harried Mother running to appointments and thinks "That poor lady". We are not poor. We are rich. We have more joy in one day than most people can have in a lifetime. I am not poor. My daughter is not poor. 

Who would have thought?

Time Flies When You're... BUSY!

Shame, SHAME on me for neglecting my sweet Little Lady's blog. And with so much going on no less!
Anyways, in my last real update, Little Lady had finally gotten approval to begin therapy with CCS . She has been receiving Occupational Therapy (which focus's on ADL's, or Activities of Daily Living. Such as feeding, getting dressed, brushing teeth, etc.) and also Physical Therapy (which focus's more on gross motor skills and strength, endurance, etc. Such as sitting, walking, crawling, standing.) OT and PT overlap each other in some area's.
The therapy services Little Lady has been provided have been an invaluable asset to her development. She is growing, getting stronger, and improving EVERY DAY! She has come so far in the last 6 months.
(As much of a hassle as it is going to therapy so often, I try to always remember how much worse it felt when she wasn't getting any help at all.)
Now, she's doing this:

 And this:

And This:

And even starting to do THIS!!!!!:

So I guess... Therapy isn't as bad as this:

Easter Bunny

It appears that the Easter Bunny has brought Little Lady her first tooth. Yikes!

Small Victory

A small victory for Little Lady today. We FINALLY (after months of paperwork and waiting) have gotten an approval package from CCS (California Children's Services) to get physical/occupational therapy (and possibly other medical assistance) from the state of California.
Now if all of this will just fall into place, we'll be sitting pretty! Fingers Crossed!!!