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. 

Then...

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.

Lilah, 
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, 
Mommy

Lessons from my time in Holland

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."

"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.

But...

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

Have you ever...

known in your gut that something needed to be done, but you just don't know how to make it happen?

Well, I am going to try something new. I hope and pray that maybe, just maybe, this might work.

Let me tell you about my Lilah.

My sweet Lilah doesn't really like to be woken up for school in the morning. She's kind of like a teenager in this regard. But, once she does wake up she is happy. I don't mean go with the flow. I mean my kid is singing, laughing, loving, joyful. Thank God she gets that honest.

Lilah loves food. Chips, cheese-dip, salsa, mac and cheese, gum, and CHOCOLATE. 

She really gets that honest.

Lilah loves to smile... (again, gratefully she gets that honest) 

 

Lilah is a stunner. I mean she is a phenomenally GORGEOUS child. So, blessed that God gifted her with this immense beauty. See....

Lilah LOVES the color purple. Yep, I died her hair purple ombre'. I am fun that way. (get over it, stuffy people. Its hair and life is too short to not have fun!)

Lilah loves to learn. Lilah, although legally blind, is a visual learner. She uses her eyes more than you could imagine. She mimics others. Lilah can spell several and correctly identify many words. Lilah is beginning to add.

Lilah loves the beach. Loves the sand, the wind, the shells, the birds, and she loves the water.

Lilah loves cheer. 

 Yep, I am one proud Mom...

 

Lilah loves to color, sing, dance,  and she adores music.

Lilah has this amazing ability where she can correctly identify the instruments playing in a song. She can tell you that the song is, for example, Bennie and the Jets just by one or two notes being played or in the middle of the song she can identify it by the voice and tune. Lilah uses her voice more with music than she does just speaking to you. Lilah moves her body more with song than she does when it is quiet.

 Lilah needs me to carry her heart and help....

She needs me to tell you that she needs more. She needs you to see her as a person more than someone who has special needs. She needs you to speak up. She needs you to stop being scared to lose your job and start doing what is right. She needs you to rock the boat. She needs you to stop living so scared and start doing more.

Lilah isn't alone. Lilah, and many like her, can and do learn. They need an environment where they can learn at the level they are currently on and grow. They need to be able to learn at their pace. Not the "standard." See, we have these meetings called IEPs...oh the dreaded 3 hour IEPs drive me NUTS! Stop telling me what my child cannot do. I am not an idiot, nor am I in denial about my kid. 

Are you?

Spend more time telling me how you can help her grow and less time pointing out her defects that don't stay on track with her peers. I am not stupid. I have grieved the fact that my baby will, most likely, never walk across a stage and receive a high school diploma. I have grieved that she may never go to college. I have cried HARD at the fact that her "friends" have moved on and here she stays. Stop treating me, and her, like we are unaware of these hard truths.
Now, for some that you need to read and hear. Lilah is capable of more than you have given her credit for. When you read her IEP and see the paper of what the "child" can do you place a judgment on her. You have branded her and for that you need to admit fault and forgive yourself for giving her less than your best each day.

Lilah, and many like her, need daily exposure to music, instruments, choir, art, dance, theater and more. Our children, those who independently walk the streets of Holland, need more than once a week, if that, exposure to the arts. Exceptional human beings need their senses stimulated in order to effectively learn. Our school systems are failing our typical children and the exceptional kids by eliminating the much needed healing of art.... in every form.

Ever hear a song and it take you directly back to a place and time? Ever see a painting and wonder how the artist touched your soul just through color and shape? Ever seen a picture that made you weep without even knowing the identity of the individuals in the image? Ever played a piano and gotten lost in the song as you touched the keys?

Imagine if exceptional human beings had the opportunity to the life-breathing, much needed world of art? Imagine an adaptive classroom  for children who can learn where they are given the freedom to grow in an environment immersed in the beauty of the arts?

What if the next savant is sitting in a self-contained classroom with that gift never opened and embraced by the world?

Stevie Wonder brilliantly addressed this....

"I just want to say..... that we need to make every single thing accessible to every single person with a disability.” 

So, I am begging for help.

I know this will work. I know that this will help. I know this will change the trajectory of my child's future. I know it will change the lives of many.
Are you willing to take the risk with me? Will you hold my hand and take the leap? Will you ask your "friends" in high places? Will you help me fund-raise for a place like this? Are you willing to do more than the minimum?

God gave me Lilah to make a difference.

I can't build it, fund it, staff it by myself....I can't do this alone. 

But with your help....we CAN do this.

We can give hope.

"They" said...

"she will never know she is 'different.' She was born this way."

They....lied.

 Words spoken can never be unsaid. They cannot be taken back. They can only be forgiven. "They", the "professionals", try to prepare with words what only one can truly understand through experience.

Lilah...

 

 knows she isn't "the same."

She knows that she cannot run as fast as those typically functioning peers. She knows she doesn't learn like others. She knows that she cannot see like them either. 

Lilah just knows.

Lilah knows when its time to laugh, time to cry, when to smile, how to "selfie", how to forgive, and she knows....when someone has hurt her deeply and refuses to change.

And gratefully at 7, even in the midst of the tears, she embraces it.

I have learned so much about myself being her Mom /advocate. I have learned to embrace my own "differences" and be proud of them. I encourage Lilah to have fun. I encourage her to....

Dance.

Life is too short to worry if someone is watching and what "they" might say. "They" were wrong once and will be again. "They" need to choose joy.

My sweet teacher. My sweet Lilah...if "they" only knew that you know more than we all do.... You know that embracing our uniqueness is what make us stronger, better, kinder, more...joyful.

Keeping being YOU...and forget what "they" say.

Tulips

For those of us who live in "Holland" the tulip is our flower. 

For those who do not understand what I mean, watch this

Tulips bloom best in places that have dry summers and cold winters. Tulips can take more than the average flower. Tulips aren't like most. 

Roses might be beautiful but have nasty thorns. Daisies might be popular and are found almost everywhere you go. Orchids are quite picky and might only bloom once a year, if you are lucky.

Tulips on the other hand....

they put up with more than most as they are growing. The go through cold, lonely winters, and then bloom best surrounded by others just like them.

Tulips are exceptional.

Just like my Lilah.

Lilah works harder than any person I know. Lilah is often lonely. (I see it written all over her face.)

Lilah knows when she is in a room full of people who can do more than she can. But, she doesn't give up. Don't get me wrong, she wants to. But you better believe that I won't let her. Ever!
Not because I don't accept my child for who she is. FAR from it. (and if THAT is what you believe than you do NOT know me. You are judging what you do not know and THAT is the definition of ignorance:lacking knowledge.) My job, my very first "job", is Mom. I am not a sit-back-and-let-you-do-what-you-want-to-Mom. No way. God gave me these babies and He trusts me to do that job well. That means He requires that I give my daily best of giving all I have, pushing, pulling, coaching, tough conversations, hard truths, grace, mercy, forgiveness and unconditional love.


Lilah's strength, her internal fire, is one I admire greatly. She has such joy. She has such beauty. She has such compassion. She has such incredible potential. When she is given the chance to grow, her brain the chance to process, her body the chance to push through the muck and dirt, her functional vision the opportunity to shine, she rises through that dark place to stand tall and bloom her gorgeous colors of HOPE.

My sweet, beautiful, strong, smart, talented, rock star, blooming-tulip....Lilah.

Future

ok, yes...let's get it out of the way...I have not blogged here in years... yes, I need to catch you all up. Later on that one...


Recently I have really worried/stressed/feared/been incredibly concerned about how life for my sweet baby will be as an adult.
The image above was taken at her last cheer competition. Yes, that child who was "branded" to not do anything has surpassed more than imagined. We still have a LONG way to go and I know this.

I do my very best to live each day in the present moment. I really do.

BUT! I am human and have those moments where I cannot breathe from whatever "it" may be, but then I dig deep and #choosejoy

My concerns for Lilah are real. They are raw. They are honest. They matter today each day ahead:

• Cognitively she cannot explain her exact specific needs effectively
• Physically she gets incredibly tired
• Vocally she cannot express her needs and wants properly
• DELAYS....

She has become this amazing little person who can ask for what she wants and needs at home in a quiet, secure setting. But, when she is in an environment that causes stress or strain she begins to shut down and look for the person closest that she trusts to aid her. I have been teaching her to look at people, in the eye, and explain what she wants and needs to them. Dinners out, gas station, grocery store, you name it.
Here is where my fear comes in...
She doesn't want to tell those people. She wants to tell me. She knows me, trusts me, and has faith from our history that I am dependable, honest, and trustworthy.

HOW DO I HELP MY EXCEPTIONAL CHILD TO ASSERT HERSELF?

Your first thought might be the same as mine, "What, I am 38 years old and I am STILL learning to assert myself for what I want and need without feeling insecure for that desired thing." Sista, you are NOT alone. BUT...that isn't the point here....

Someday I will no longer be on this earth. That isn't a woah is me, it is a fact. Some day I will be called home. Will I have prepared my Lilah properly to be independent to know she will lead a good life without me? I will NOT have her institutionalized. I will NOT!!! have it. You better be dang sure that I will hang on until 110 years old to guarantee my child is not put in a room and "forgotten."
Because of Lilah I have learned to become this person I never saw myself as, but always wanted to be.... self-assured. Fighting FOR her has taught me that expecting more from people doesn't mean I am a B@&^%, contrary to what some might think, it means that I know there is more out there and I expect the best from each person who encounters my kid. IF you cannot give her your best, then get out of her life. Sorry. She needs you to step up to the plate and be who God called you to be. Lilah needs you to put your selfish needs and wants aside and give your extra effort to help her become what I know is possible for her. I expect greatness because greatness is in each and every one of us.
Please do not get me wrong here.
I am so human and such a woman. I doubt and worry and fear, but I do not stay there.
I know today that other people and circumstances do not dictate my "happiness."

HOW do I teach this to all of my children, but especially to the child who must work harder than any of us at this life?

Many thanks to those who have helped, taught, loved, aided and not given up on Lilah, me, our big family, etc and stayed in the game to help. Your presence is THE best present. For those that are too ashamed to admit their mistakes...you are forgiven....please leave the pride aside and be a part of this life-changing human being.

Please help me help my child. Please.

Happy. Confident. Teacher

We can all learn from Lilah.

Be happy.
Smile.
Laugh often.
Laugh with an "evil" laugh just to throw people off.
Dance in public.
Enjoy each moment.
Wake up happy.
Sing your favorite song as loud as you can everywhere you go.

Try things that scare you.
Have people in your life who push you to do your best.
Love big.
Give lots of hugs and kisses.