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.

Choosing Joy. Are you?

Today my partner in crime , my companion, and best friend went with me to some fun activities and preparations for her older siblings. Today was much more fun than yesterday's spending hours at the Courthouse and CSS.


We took Alex, Sammie, and Eli to school, then we went to Wal-mart to get drinks and snacks for her sisters field days.


At 9:30 Lilah had O&M and I went to the gym and hung out with Team Madagascar and this gorgeous beauty!

 

Then I rushed down to the other end of the school to give drinks and Snacks to Sammie's teacher for tomorrow.

I made it back to the office just in time to get Lilah from her O&M instructor. Then she and I made our way to the cafeteria to have lunch with Eli and then Sammie

 Then I made my way back to the gym and sat with Alex and her friends for a little bit.

Then it was time to come home and take care of some things here.

And I sat down for a few minutes...and guess what happened?

I fell asleep. I guess sometimes the Mama Bear needs a little re-charge. Now to get my babies from school and help them with their homework until their Dad comes for his weekly dinner visitation. Then to pour in to the oldest 4. Please pray for Ashley as she will be going to DC tomorrow with school.


We may stay busy, but we have therapy moments, and we just giggle throughout the day.

There are reasons to smile each day. Are you choosing joy today? I am.

A hero

I often say that Lilah is my hero. That she is the strongest woman I know. I also say that she will change the world. Her.

The person who is the hero usually has to fight harder than others, demand more from themselves, and has an incredible support system behind them.



The heroes don't see it in themselves. They don't know their potential. They don't see that they are the light that will change history.


I believe that Lilah will change history. I believe she is doing that as we speak.


I know she is changing the way people view children with special needs. I believe that people are drawn to her. Drawn to know her, get to know her, help her, help her succeed.

People with disabilities are often looked down upon. People will sometimes only see the disability and not the person.

Here is an example...

Someone very close to Lilah admitted to being nervous to meeting her for the first time. Afraid of how to act, react, how she would be, etc. This person has said that the first time they met her, they were in love with her. This person has said many times over that Lilah is their best friend and that they could not imagine their life without her.

Fear can either motivate or debilitate. 

After seeing the movie "42" I was overcome with a massive "God wink." It was an intense feeling of "Go write Katie. Lay it out."

When Jackie Robinson first played baseball he was faced with so much. Racism, criticism, doubt, fear.

He faced many people who were ignorant. Now, before you get frustrated by my use of that word. Please read the definition...

Ignorance is a state of being uninformed (lack of knowledge).^[1] The word ignorant is an adjective describing a person in the state of being unaware and is often used as an insult to describe individuals who deliberately ignore or disregard important information or facts. Ignoramus is commonly used in the US, the UK, and Ireland as a term for someone who is willfully ignorant.

Jackie Robinson faced many ignorant people. Some who wanted to hate him. Others who were taught that hate by their parents. He was also loved by many. But, his admiration was not immediate. He had to fight for the recognition. He had to fight for his spot in the Major Leagues. But, he had to control himself. How he responded to such hate. He had a choice to retaliate or he could do what he did...He worked harder and harder. He let his talent on the field speak for itself. He earned his right to play. And be in the hall of fame. To many, He is a hero.

Many are ignorant on how to treat people with special needs. So many people use the word "retarded" or "retard" in their everyday language. Many have no idea the negative impact that word has. Many are unaware of the pain that is associated. The tears that come with hearing that word. But, there are some who are "willfully ignorant." People who choose to use the word because it gets them some sort of attention, recognition, laughter, you name it. Please take the word RETARD and RETARDED out of your vocabulary. For Lilah.

Let's look at it like this...
We have a choice on how we treat people on this earth. We can judge them. All of them. Or we can love them. All of them.

We can open our eyes to the need to help, we can open our hearts to someone who may need you to be a tad more patient, listen as they try to speak. We can also choose to close our eyes to those who are differently-abled and ignore them.

What WE do, and how WE behave is up to us. We have the ability to change the world.

We have the ability to BE the hero.

Watching Lilah at therapy EVERY day, I see the fight my little bumblebee has in her. I see her determination. I see her fear that tries to keep her in her shell. I also see her potential. I choose to help her. I choose to love her. All of her. My hero is Lilah.

Last day...

Tomorrow will be Lilah's last day at Bloomingdale First Baptist Preschool. My heart will probably not be able to explain in words the gratitude I have to Penny, Amy J, Vickie, Amy D, and Brandy for giving my sweet miracle their love for the last 9 months. But, I will try.

I decided to post a few images from her school experience:

 

 How can I even begin to express my appreciation? Bloomingdale First Baptist gave Lilah a chance when other schools said "no." Even the church I was attending at the time was afraid of her "physical limitations." But, this school (that all 4 of my children have now attended) THEY saw something in her and that has helped her break open out of her cocoon and begin to fly.


Lilah has been loved, challenged, and accepted. There have been times that her disabilities have slowed down the class, the school, etc. I know that this was not easy. I know that at times they wanted to pull their hair out with her. Wait, and/or me. And I understand that. I know that as a child with special needs Lilah can be quite a little stinker. And as her Mother, advocate and Mama Bear...I can be even more of one.

I thank them for loving us, both, and for seeing the potential in the miracle that is Lilah.


When Lilah walked down the isle on Friday night for the graduation, I was beaming with pride.

 As she laughed, sang, and danced with her friends I was filled with so much emotion.

 Not only had Lilah come such a LONG way, but she was up on the stage with her typically functioning peers.

 When Amy called her name and said, "Come to Miss Amy" and Lilah side stepped between those chairs

 and walked confidently across the stage

 to receive her certificate... I LOST it. Tears streamed down my face.

The hard work, the therapies, the determination, looking and looking for schools, all the prayers, the being hated for pushing her as hard as I do, and knowing she deserves everything... has paid off. 

I am so blessed and grateful that Bloomingdale First Baptist gave Lilah this chance. They will forever and always be a part of a great story. One day when they read about some great accomplishment she has achieved, they will know that they were a part of it. They were the place that gave her a chance.

Now, to her teacher...

Amy, 

Where do I start? How do I even begin to thank you enough? For agreeing to give her a shot. For seeing her potential. For loving her. For making her laugh. For pushing her. For changing a ridiculous amount of nasty pull ups. For changing her dirty panties when she was potty training. For treating her JUST like the others. For including her therapists. For scooping Lilah up in your arms and giving her what she needed. Thank you for all that you have done for my girl. Thank you for taking a chance on her. Thank you! It will never be enough, but I promise I will always cherish you as her first teacher. The one who said, "YES!"

MUCH love and many thanks, 

Katie

TEAM Lilah!

The first image was taken on 12/30/11. My miracle was 3 years old and couldn't walk unassisted. My Dad calls Lilah the Bumblebee because the bumblebee really shouldn't be able to fly, but it flies anyway. The second image was taken on 5/3/13. 16 months later. Walking independently, confidently across the stage to receive her certificate from her 3yr old class at preschool.

I cannot begin to tell you the emotions that are attached to this.

So much work. SO many therapies. DAILY.

Lilah IS the hardest working woman I know.

Hands down!

Yesterday Lilah had her IEP meeting to plan for her next year of school. Each time these meetings arrive I am overcome with emotions. Typically they will discuss what she cannot do, how much work needs to be done, how much time per week should be allowed per therapist. 

Each meeting I have attended alone. The only parent present.

The first few were intimidating and I really didn't know what to ask for, what I could say, how to act, etc. For many reasons. I hated going to these meetings alone. HATED it!!

But, that was the hand I was dealt and I had to learn to fight for my girl all by myself.

I now go to these meetings with a different perspective. I show up with chocolate and gum, ready to laugh about how hysterical she CAN be, and what she CAN do. Lilah's team is part of my family!

They have seen her grow. They have been there for me in the toughest times. They are amazing people who want nothing more than to see this bumblebee take off and fly on her own.

MANY thanks to her OT Debbie, PT Eric, ST Judy, PSI teacher Ann, TVI/O&M Sarah, new SPED teacher Angie and new pre-school teacher Leslie. Lilah will be in the pre-k inclusion class next year.

I cannot wait for what the new year will bring. Get ready to hear some more BUZZing from this amazing miracle!

Thank you, God, for sending ME the absolute best teacher in the world...Lilah!

Lilah's first egg-hunt at school

Do you know what warms this Mama Bear's heart?

When Lilah is included. Treated JUST like YOU treat you children.

I don't consider Lilah "different" anymore. She is JUST like your child.
Yes, she may take longer to do things that your child does, but she figures out a way to do them her own way and on her own time.

Thursday at her school she had her first Easter Egg hunt with her typically functioning peers.

She LOVED it.

The eggs.

She opened each one before they made it into the bucket.

And she squealed with delight as she played with her friends.

Lilah is loved so much by all the people she encounters.


These next two images are of Lilah and her sisters. The first if of her and Ashley.

Ashley is her "almost" step-sister. But, you should see them together. This is a bond I could have never expected, anticipated, nor seen God preparing for both of them. Ashley loves Lilah something fierce. And the feeling is mutual.

This next image Lilah is listening to Ashley's ipod with her headphones during a band concert. Lilah is being snuggled by Sammie and she loves to hear some Justin Bieber, Thrift Shop, Maroon 5, and many more.

The more Lilah experiences in this life, the more she loves it.

I am grateful for all that I have learned from my most precious gift!

St. Patty's Day Parade at school

Yesterday at Lilah's school they had their annual "Green Day Parade."

Lilah did so great!

She was very interested in how everyone else had their bikes, strollers, and wagons decorated.

I LOVE how excited each child gets!

As Lilah turned the corner the second time, she became even more comfortable and waved at the pastor of the church.

Look at how STRONG and confident she is....

To think how FAR she has come in 4 years.

Lilah was VERY interested in the bikes. She kept calling out "bike." I know how much she loves the tricycle at therapy, so I think it is time I invest in something she can ride.

They next two images of Lilah and her friend, Gabby, make me tear up. Lilah LOVES Gabby. She calls for her at home, and when I walk her in to school this is the person she asks most for... besides her teacher.

Gabby LOVES Lilah as well. She doesn't treat Lilah differently. She just sees her friend. God BLESS her parents for the great job they are doing raising this sweet girl.

Many parents stopped me yesterday and told me how GREAT Lilah is doing. How far she has come. Several said the words "its night and day" from when she started the school.

I cannot thank Bloomingdale First Baptist Preschool enough for taking a chance on my sweet Lilah.

Lilah has exceeded her goals in her therapies because she is with typically functioning peers AND siblings. Lilah does not know she is differently-abled.

Lilah does all she can to do what her friends do at school and what her siblings do at home. She may take a little longer getting there, but she figures out a way.

Her teacher, Amy, told me yesterday that Lilah got up on the second step of the monkey bars at recess. And her PT was there to see it.

God is so good.

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.

AHA!!!

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.

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!

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.