"May the God of HOPE fill you with all joy and peace as you trust him, so that you may overflow with hope by the power of the holy spirit."

~Romans 15:13

Wednesday, May 25, 2016

Oh the places you WILL go...

 For the child who was branded at birth, this day was incredibly emotional for me...
 and for her.
 Lilah has worked so far to overcome odds. She has had the cards stacked against her. And she is well aware of the deck...
 But look at what she has done...

This morning I had a transitional meeting. With Lilah's Kindergarten teacher, SPED teacher, the Principal, her TVI, and her First grade classroom and SPED teacher.
I wanted to give them information about Lilah.
I gave them my "Lilah Bible" as I call it. Her medical history from birth to present. (All copies of MRI's, blood tests, Dr visits...you name it.)

We talked about her brain.
Her "labels" and how she has already overcome so much of what she was never meant to "do."

Then....a question was asked.

"What do you see when you think of her future?"
LONG pause.

"I see a fully functioning, independent adult."

The next question was...
"What are your plans after second grade? You need to think ahead because we don't want her becoming more defeated. Do you really see her learning Algebra?"

and that was it....

Full blown tears...

I said...
"I never thought I would get THIS child...."

And the room got quiet. And I further explained. As much as Holland is really hard. That these moments remind me of the dream lost for my child...THIS Lilah was never promised. THIS walking, talking, reading and writing, miraculous child.

I asked the team to remember that this child has come so far. That this child has overcome such leaps and bounds. That this child continues to surprise and impress the crap out of all of us. I never thought Lilah would be doing all she is. THIS Lilah was not promised. THIS Lilah is not the one I envisioned when she was branded at birth. 

Lilah's upcoming First grade teacher reminded me of the time I helped her when her own child needed an advocate.

Her First grade teacher said "I want to focus on teaching Lilah where she is and helping her grow."

I left that meeting having landed in Holland all over again. Having been reminded of the dream for my child that is lost. But more importantly...I am grateful for Lilah's team. As much as I push and pull and advocate for my miracle...I cannot fully explain my gratitude for them loving her and wanting to help her grow.

We have more work to do, my sweet baby. Someday you will understand why I push you the way I do. We have massive mountains to move, my dear... Let's get to work. 
All my love, 

Wednesday, May 4, 2016

Lessons from my time in Holland


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."

I have never cried as much as I have in the last 7.5 years of my life. 
The pain. The heartache. 
The WHY her. 
The gut-wrenching comments. The use of the awful word "retard". The countless hours spent at Doctors, Therapies, blood tests, hospital visits, surgeries.
The end-less meetings. Evaluations. The worry. The why don't you want her in your facility, school, heart. The never having the option to really breathe a sigh of relief.
The obstacles she has overcome: At birth I immediately knew. She wasn't breathing, fighting to "thrive", Complete blindness to functional vision, eating, growing, crawling, independent standing, walking, running, talking, singing, cheering, LEARNING, and her immense personality for days!
I would not be honoring God if I didn't tell you that there are hot-minute moments when I want to have "normal"...but honestly...I wouldn't trade one, single minute of any of this. 
Lilah has taught me more about the real meaning of life. Holland is not easy, but it is the most breathtakingly beautiful place I am honored to call home.

Lilah's proud Mom