NORMAL

I wanted perfect. I craved it like a drug.
I wanted what other families had.
I wanted “Normal.”
Well, it just was not going to happen.
The stark reality of it hit me like a physical blow.
I looked at my daughter who was time locked in her mind.
It was not fair.
Not fair to her and not fair to me.
So for many years, I hovered between anger and sadness.
Watching “Normal” and wishing we fit into that category.
Jealousy raged within me as I watched the “normals” go about their uncomplicated lives. Taking it all for granted while I felt weighted down by pressure.
Then one day it dawned on me.
Even “Normals” are not always normal.
“Who decides what is normal anyway?”
Our world is a melting pot of diversity.
Our youth seem to take great delight in being different with strange hair colors, piercings, and tattoos.
They want to stand apart from the “Normals” but why?
Why would anyone want to be different and risk being ostracized?
I thought about this a long time and came to a conclusion.
It all comes down to loving oneself,
enough to own who they really are and to challenge societies rules.
When you love yourself, you hold your head up in confidence.
You do not allow negativity to penetrate your armor.
You grow stronger.
As I look at my daughter today. 28 but still mentally 2.
I have come to admire her differences and I know she is her own kind of “Normal”
and that is perfectly fine with me.

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The first day of school

 

Devoted to all the perfectly abled children and their parents. May you all have a blessed school year.

The room was just like any other classroom. There was a teacher’s desk. Carpeted floors for the kids to sit on. bright colors in the form of wall decor and educational toys. A collection of small face This was school. It did not matter that the kids had a variety of medical needs.Some could walk, others crawled. Some could talk. Others simply uttered sounds. Some wore helmets to protect their heads in the event of seizures, Some were visual, mentally or hearing impaired. Some would need medication, Some would need diaper changes. These children were students and they were gifted. Yes, many came in the guise of “unteachable” and it would take a very special teacher to reach them but with the right educational tools and attention, they will flourish. For the Mother’s and Father’s of these children, it is a huge step. Many of our children are unable to come rushing through the door after the first day to announce they had an awesome day. We have to build a layer of trust and do a whole lot of praying. Many of our children are now main streamed so we also have to ensure they are not bullied because of their disability. So, if you encounter my child who is fighting the good fight, give them an encouraging word. I will be the mom walking out the door with my spine held ramrod stiff trying to swallow the biggest lump in my throat.

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Our Children are not monsters

I am the Mother of an adult daughter who has severe mental disabilities.

To me she is genuine, beautiful, funny, smart, ect…

I am proud of my daughter. She has struggled through thousands of seizures,

heart failure and brain surgeries to be here. She is my hero.

The majority of my friends who also parent children or adults with disabilities

also feel this way.

We have made it our life mission to make sure our children/adults stay well, healthy and

happy.

We place their needs before our own.

That’s what LOVE is…

Our reality is life can be challenging, frustrating and exhausting. We must always think

of our child/adult’s needs before our own. It is often a thankless task but the LOVE keeps

us going.

I have had the pleasure of parenting Dac for 28 years. I could not imagine a single day

without her in my life. I am her caregiver. She is my constant and best friend.

Above all else I want to protect her from the hurts that this world sometimes serves up

much too generously. People can be cruel.

Dac, because of the severity of her mental disability does not seem perturbed when we

are out in public and people stop to stare. Anyone that knows me will tell that I am

friendly and I love to talk. A people person.

Take a passing glance (we “All” notice differences), ask me a question or smile and it’s

kosher.

Mock, ridicule, or stare rudely and I promise

I will open a can of “whoop a#% ” with your name on it.

I am a God-loving, church going gal.

Just don’t hurt my kid.

I will momentarily lose my religion. Ever seen ugly up close?

A couple of my friends who have kids with TSC. One is an adult have recently

shared that their kids were called names by adults while out in public. They were angry,

hurt and reeled in disbelief that their child/adult was subjected to this kind of abuse.

They were ready to open the “whoop a$%”can and who could blame them.

Our children are not monsters.

Yes, they behave differently at times.

Yes, they may have obvious outward signs such as scars, mental, physical or even tumors

like the ones on Dac’s face.

This is their truths.

It does not give you the right to treat our child/adult unkindly.

Respect our disabled population.

Our children are not monsters.

They are human beings just like you.

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To the Lady at Walmart

Hi from dac and I. We are up to our usual summer antics. Movies, playing in her paddling pool and enjoying her new trampoline. One of our favorite places to go for day trips is Walmart. I’m usually shopping for invariable odds and ends and Dac is happily anticipating new toys. (I should be a V-tech stock holder)

Because she is Autistic Dac’s moods can be unpredictable. A hug one day, a shove to push you away the other. A bubbling laugh that seems to ring like bells or teeth pulled tight against her upper lip and hands over ears. Bright shiny eyes that seem to know things even I don’t or eyes that seem vacant.

I never know.

I try to gauge Dac’s moods. I know her triggers. Loud noises, babies crying, storms, unexpected sounds, crowds.

Hmmm where can we go that doesn’t have these things?

The first pic is July 6th the morning of her birthday. Before we had outings and lots of stimulation.

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The next photo was hours later. after her birthday party where there were no smiles because family were crowding her and singing.

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As you can see, she looks far away and vacant. Overwhelmed and maybe frightened. It’s hard to tell because Dac does not have very much expressive language. I wish I could live inside her head for a day and feel what she feels.

I hate that she had Autism.

Our trip to Walmart was not a good day today. dac kept one hand over an ear, refused to make eye contact and frowned. I hurried us up because I knew she was melting down.

So, to the lady at Walmart who chose to stare like my daughter was a freak of nature,

I say one thing.

“Do not feel sorry for us because we do not feel sorry for us.

We live life in the moment most days. We do not have expectations.

We have anticipation and a boatload of hope.

I am sorry that you did not get us on a good day like yesterday when Dac was finger painting her masterpiece. Just look at that smile. So sorry you missed it.IMG_1562

 

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The language of Love

What do you mean Dac when you say “I’m sorry.” many times a day?

Why do you say a two word phrase “Deborah right.” yet you can not say ball

or baby?

Why do you lose words yet they may reappear months or years later?

Why do you speak in sing song fashion like your words are carried on a melody?

Today I think these thoughts about Dac’s ability to communicate, yet it is in her own way.

Echolalia. Doctors call it. Often associated with Autism which is one of Dac’s diagnoses.

I call it wonderful.

I call it words.

I call it sounds.

I call it music.

I call it long awaited.

I call it prayers answered.

I call it hope.

I call it the language of love. Keep on talking Dac. Mommy is listening.

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National Super Hero Day

Today is National Superhero day and while billions of people across the globe are

admiring fictional characters like Spider-Man, wonder woman, superman ect…

I am sitting here looking into eyes that are the oddest mix of blue/brown and thinking

to myself.

“Dac, you put those characters to shame.”

Dac  was born with a hero status. She was destined to be a fighter because of Tuberous

Sclerosis, Epilepsy and Autism. I have witnessed this first hand as she has barely clung

to life. In 1995 she developed her first brain tumor. what should have been a relatively

easy surgery brought severe complications. She had a mild stroke and lost her ability to

walk for several weeks. She also developed hydrocephalus and had to have a shunt

placed in her brain. Later she would have two shunts. Heart failure came next and she

spent weeks at Duke University in North Carolina holding onto life by a thread. After

that, over the course of several years there have been more surgeries, more tumors,

shunt revisions, Too many seizures to count, ect…

Do you know throughout all of this she has never shed a tear, That gets to me.

Today she is almost 28. (July 6th is her birthday.).

She walks around my home with sunshine smiles and laughter.

She walks in a land mine of Tuberous Sclerosis. Suffering monthly grandmal seizures.

Tumors lie dormant in her brain, heart and kidneys. Some are growing which will

require surgical intervention in the future.

So, today is National Superhero day.

Will you do me a favor. If you know someone who is fighting the good fight, please

give them a hug.

They are the “Real” super hero’s.

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The light switch

“It’s like a light switch that flips on and off inside her head.” I confided

to a friend while discussing my daughter Dac’s Autism. I think of Forest Gump’s

infamous line “Life is like a box of chocolates. You never know what your

gonna get.” That is a clear definition of Autism. My analogy to a light

switch stems from the changes in mood to which there seem no rhyme

or reason. Add non verbal to the mix and you are left shaking your head.

If you are lucky you might discover what the triggers to the mood changes

are and the light remains bright and glowing all day. If you are unlucky

you will see panic, fears, maybe tears, hear screams, there is darkness.

The light is off.

For Dac some of her triggers are sounds. She has a fear or flight reaction

to some pretty basic sounds. ie.babies crying, certain songs, loud rain and

thunder, ice cracking in a glass.” Yes, ice. Now, the dilemma is how can I shelter

her from such noises? The truth is I can’t. All I can do is to reassure her. That is

what apparent does best.

It is socially awkward to try to explain the manifestations of Autism. People

do not understand when the light goes out and our loved one is plunged

into darkness.

Even the ones who try to help are left feeling inadequate.

Sometimes I do as well but I keep trying to keep the light on.

Willing to Die Thirsty

love this

Finding nineveh

For Holy Week, I decided I needed to write something, and this is that something.  We’re going to get to the significance of Holy Week, but first I am going to need you to stay with me as I meander for a bit.

I have eclectic musical tastes.  I am all over the sonic map.  Rock, hip-hop, country (real country, not FGL), grunge, classical, alternative – you name it, and it has found a way into my ears at some point.  For the past two or three years, as I’ve made changes to many aspects of my daily life, one of the main focuses of my change has come in my musical interests.  I would estimate that I listen to an average of 60-75 minutes of music each day, and probably 90% of that music fits within the genre of “Christian Contemporary”.  I am a K-Love fan, but I get…

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How my daughter saved my life

How could my daughter who is 27 (mentally 2) save my life?

As I write this I try to remember who I was before Dac. I am sure I was a competent

Wife, Mother, Cook ect… but who was i beyond those roles? Before Marriage and babies

i was just a young woman without any real direction. I was not on any particular career

path. I actually thought becoming a wife and Mother was my ultimate goal. The idea of

falling in love and giving birth filled me with anticipation. When those dreams bore fruit

i felt like God himself had answered my prayers.

Then Dac came along and with her the diagnosis of Tuberous Sclerosis Complex. A

beautiful baby (normal at birth.) She would spiral down the rabbit hole and emerge a

young adult with a severe mental handicap, autism and Lennox Gastaut epilepsy 27

years later  but this is not about Dac. This is about myself. When i discovered Dac would

always be  dependent i made it my mission to give her the best life possible. I had to test

my mettle so to speak.

To determine whether i had the fortitude to take on the challenges of day-to-day life

caring for another human being. I was a mom already and a nurturer but i relished in

my other children’s sense of independence and identity. Would i find myself or even

Dac somehow lacking if she failed to perform even the most basic tasks? As i began my

journey i began to feel God’s eye was upon me. Was this a test of my character. Was God

testing me? I thought of God’s unconditional love for me and how many times i had

failed him yet he continues to love me. Warts and all.

I turned those thoughts of his unconditional love for me into positive action. How could i

not love my child in the same way? How could i best help my daughter who needed me

for all things? This was a discovery period. I learned i was braver than i ever thought i

could be. I was mousey in school.

Scared to speak up and always the nervous sort. In parenting a daughter with complex

medical problems my  hands have grown steady and my voice has grown(at times to

octaves) when speaking on her behalf. I learned how to project confidence in my stride

as i push her in her wheelchair into places where everyone stares.

“We are here. Stare if you must. We know we are fabulous.” my mantra.

I have learned what God’s Grace truly means as i observe the even rise and fall of my

daughter’s chest as she falls asleep. She made it another day. Overcoming seizures,

heart failure, brain surgeries and many other problems.

I have become a researcher, a teacher, a public speaker, a defender, an advocate, more

confident, more humble, a listener, a confidant, a friend and all of these things have

been because of my relationship with Dac.

Maybe i had some of these qualities before. I like to think so but i do not think i

ever gave pause to acknowledge who they made me as a person.

I like the me i am now.

I see myself in a different light just as surely as my daughter has differences. These

differences do not make us less. They make us so much more.

As surely as if she tossed me a life perserver ring in the ocean of life,

SHE SAVED MY LIFE.

She helped me discover my inner workings(my soul.) and i feel God smiling.

Thank you Dac.

me and deb