"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

Saturday, January 26, 2013

and there you will stay

In the poem Welcome to Holland (click on the words to watch and listen) the words "the loss of that dream is a very significant loss" hit like a TON of bricks Thursday.

I guess I have spent the last 9months or so focusing on Lilah's strengths, her achievements, her incredible strides that I often "forget" her differences. This is such a great place to be to focus on the positive, BUT realism and truth of her delays are still there.

Nothing horrible or bad happened. No one "hurt" my feelings or said anything I wasn't already aware of.

But, I am faced with a choice...."What to do for Lilah next year for school?"

As a single Mom I struggle to pay for Lilah's school, but I do it because they are so great with her. AND They have given her a chance in a typically functioning pre-school when many others said "no." Even my church, the people who should support and give her a shot first... wouldn't. The school was too afraid of her "physical limitations" and wanted to put her with the 2 year olds. Lilah is 4.

I fought hard for Lilah. I asked. I researched. I looked and looked. I almost decided on allowing her to go into Chatham County's PSI classroom.

But, when the phone rang last year and Penny said they would give her a chance I wept tears of joy.

That chance.....The last few months has made a MASSIVE impact on Lilah. She is treated like the other children(with alterations here and there) and she is expected to do what they do. The first few days of school she sat at her desk not really understanding about center time and different activities. Today, a little over 3 months of school and she is interacting,doing more and more each day. She is challenged.

The more I challenge Lilah, the more I expect OF her...even knowing her limitations like I do....the MORE she does.

Now comes the HARD part.

I forget that Lilah IS so different because I try not to see her that way...and sometimes it SUCKS. It sucks that she wants desperately to do what her peers do, but cannot figure it out yet. It sucks that she only sees the JOY and happiness and her hurdles are so real.

It sucks because when I am told, in honesty, (which I LOVED Penny for telling me the truth and not hiding behind it) that Lilah probably isn't ready for the 4 year old class next year...that I wept the rest of the day. I am more aware than most understand. I am with her the MOST. I go to sleep thinking what I can do to help her more. I wake up and hear her across the house without a monitor. Every other weekend when she goes to her Dad I try to work so I can spend more time teaching her when she is with me. I am always "on" when she is around.

I feel like no matter how much I fight and push and try...its never enough. And I HATE that feeling. I hate it. I hate that she will ALWAYS be compared to her peers. I HATE that. But, its a fact. It is one I am still grieving. It is the part of Holland that can be the absolute hardest...

Not enough.
Not strong enough.
Not fast enough.
Not smart enough.
Not ....

UGGGGGGGGG!!!!!!! This is when the PAIN hits. This is when the tears just stream down my face(yes, as I type) and I ask God, WHY?

Immediately I cognitively KNOW why. I LOVE my fighter. I adore what she has taught me. What she has taught us ALL. I love the journey. I see her triumphs everyday. I GET to be a part of it. I am the lucky one.

But, I am still her Mama!

I want the BEST for her. Just like we all do for our kids. We all weep (maybe only on the inside for some) when our kids are hurt, made fun of, don't make a team or squad, are bullied, you name it.

Its almost like Lilah keeps trying out for a team and each year she practices harder and harder and looks better and more on her game. But, the day of try-outs come and her name is never on the list of those who "made it."

So, here is where my 12 hour crying (SO much better than the first 5 months of her life I spent crying) have now turned into action mode...

These very real questions are here for me to make a decision in LESS than 2 weeks:

*Do I register Lilah for school in the 4 year old class and challenge her?
*Do I put her back in the 3 year old class and see if she catches up? Which will mean she will start Kindergarten later?
*How am I going to afford TWO more years of the school when I struggle to pay it each month now? 
*Do I send her to a PSI classroom with other children with needs like her? I don't want to because her therapists may not make it to the class and I would NEVER know. At least at Bloomingdale they tell me when the therapists haven't shown up.(THAT is an entirely different fight I must face this week)
*I want Lilah with typically functioning children. She has made HUGE strides by being with them. HUGE!

Before I go any further, I want you all to understand how MUCH I love Lilah's school. I LOVED it when my older three went there. I never knew how BLESSED I was to have them teaching my kids until this year. They have bent over backwards to help Lilah. They have done what they therapists have suggested. They have opened their doors to my girl when many wouldn't even crack the window.(THIS makes me cry harder than anything) They LOVE my girl. I don't want to leave the school. I know that what they have done for Lilah is a blessing I could never repay anyone enough for. I know that it takes sacrifice to have my girl in a classroom. I know that sometimes the other children must wait longer because of her. I know that having Lilah in a classroom can make the schedule alter here and there. I know. I will never be able to thank them enough. I hope that the other parents in the school understand that I am grateful to them for being patient with Lilah when the class is delayed for any function because of her. Field trips. Anything. I know.

I am at a crossroads of decisions. Making these decisions are never easy.

But, it has also spurred in me a desire to make my home more of a learning center for Lilah as well. In Lilah's bedroom there are VERY large letters that spell her name on the wall. She spells her name with the letters almost every night.


Time to label EVERYTHING in the house. Not only will this benefit her learning, but it will help Eli with his sight words and sentence formation.

It won't look "cute" but who cares. I am NOT in this to impress anyone. I am not in this to make friends. As someone-who-will-remain-nameless told me years ago,"You be THAT Mom that the board knows by name. That they know will get the job done. Will go above whomever she has to until the need is met."

See, I am always fighting. My gloves never come off. They are set down, but never far from my reach.

Holland IS a much slower place, and Italy may never be in our reach, but I am determined to help the Windmills run smoother and the Tulips bloom longer.

I. am. an advocate.

Tuesday, January 15, 2013

I haven't written one like this in a long time...

When Lilah was diagnosed my world was forever changed.

I remember writing a post about my fears for her. For her life. Her future.

I don't want to go back and read them all right now to find it because I know I will lose the courage to get this out, but I remember writing a post about whether or not Lilah would be loved....

I remember typing the post in my bed, on my lap top, with tears streaming from my face.

I was so scared she wouldn't be loved. For who she is.

What I didn't realize until this morning.... That was my fear. For myself. I made the mistake of thinking my beautiful daughter wouldn't be loved, because I... I didn't think I was loved.

I didn't see myself like God sees me. I struggle with this. Daily.

This morning as I walked Lilah into school, I took this image with my iPhone.

Do you see the light coming from behind the trees? It looks like a heart or angel wings to me. 

My fears for her, for her being accepted and LOVED for who she IS....not who everyone WANTS her to be...MY fear....MY stupid demon I struggle with inside of ME...was laid to rest...for her this morning. For her.

I watched her walk into school, and one of her sweet little friends was waiting for her at her cubbie to show her that she had new Justin Bieber earrings. (He is Lilah's favorite) This sweet little girl was so excited for Lilah to see them. Then, I watched my Lilah put her cane in her cubbie, take her backpack off, hang it up, get her folder out and take it to her teacher. Then, she danced with one of her friends playing a little guitar. Then, she walked, confidentiality, to the back of her classroom to the "center" to play.
Lilah IS loved. She IS confident. She knows nothing of her "disability." She is happy. Almost 99.5% of the time. She exudes joy. She is MY angel.

SHE is here to remind me daily. By the hour. That I, too, CAN. I am loved. I cannot let my past and my pain define me. I must use it as fuel for my fire.

I got to my car and saw on my phone a notification that my friend, Christy...my best good friend as Forest Gump says, had tagged me in Pink's cover of Girl on Fire. Click here to watch and listen I just cried and cried. 

See, my sweet friend says that the song reminds her of me. So, I have dubbed it my "theme song." 
And, I psych myself to that place. Everyday. 
 My Lilah is here to help us all. Not just me. She is here fighting EVERY day. She is THE strongest woman I know. I see it daily. I believe it. SHE inspires me. SHE encourages me. SHE motivates me. 

Her will. Her determination. HER!

 I cannot thank God enough for her.

THIS girl...Lilah...is on FIRE!

Thursday, January 3, 2013

My Inspiration

So many people ask me how I do all that I do. Or WHY I would even attempt to run marathons or try new things.
Many people aren't as blessed as I am.
They don't get to see hard work in action everyday.
They don't get the opportunity to see inspiration right in front of them.
I am the lucky one...
I see it everyday...
She was sent to me for this reason....
To inspire me, then for me to be "me"...loud and out there and tell-it-like-it-is...
and encourage and inspire you.
Hopefully this will encourage you today.
Here she is working HARD in O&M today.

We take our "abilities" for granted some times. The ability to walk, to talk, to comprehend...to see the floor below.
 We should learn to LOVE these abilities.
I have such gratitude for Lilah.
 Her life.
 Her love.
My daughter.
My teacher.
My inspiration.
My hope.