I Am the Child

I Am the Child

I am the child who cannot talk.

You often pity me, I see it in your eyes.

You wonder how much I am aware of -- I see that as well.

I am aware of much, whether you are happy or sad or fearful,

patient or impatient, full of love and desire,

or if you are just doing your duty by me.

I marvel at your frustration, knowing mine to be far greater,

for I cannot express myself or my needs as you do.

You cannot conceive my isolation, so complete it is at times.

I do not gift you with clever conversation, cute remarks to be laughed over and repeated.

I do not give you answers to your everyday questions,

responses over my well-being, sharing my needs,

or comments about the world about me.

I do not give you rewards as defined by the world's standards -- great strides in

development that you can credit yourself;

I do not give you understanding as you know it.

What I give you is so much more valuable -- I give you instead opportunities.

Opportunities to discover the depth of your character, not mine;

the depth of your love, your commitment, your patience, your abilities;

the opportunity to explore your spirit more deeply than you imagined possible.

I drive you further than you would ever go on your own, working harder,

seeking answers to your many questions with no answers.

I am the child who cannot talk.

I am the child who cannot walk.

The world seems to pass me by.

You see the longing in my eyes to get out of this chair, to run and play like other children.

There is much you take for granted.

I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again.

I am dependent on you in these ways.

My gift to you is to make you more aware of your great fortune,

your healthy back and legs, your ability to do for yourself.

Sometimes people appear not to notice me; I always notice them.

I feel not so much envy as desire, desire to stand upright,

to put one foot in front of the other, to be independent.

I give you awareness.

I am the child who cannot walk.

I am the child who is mentally impaired.

I don't learn easily, if you judge me by the world's measuring stick,

what I do know is infinite joy in simple things.

I am not burdened as you are with the strife's and conflicts of a more complicated life.

My gift to you is to grant you the freedom to enjoy things as a child,

to teach you how much your arms around me mean, to give you love.

I give you the gift of simplicity.

I am the child who is mentally impaired.

I am the disabled child.

I am your teacher. If you allow me,

I will teach you what is really important in life.

I will give you and teach you unconditional love.

I gift you with my innocent trust, my dependency upon you.

I teach you about how precious this life is and about not taking things for granted.

I teach you about forgetting your own needs and desires and dreams.

I teach you giving.

Most of all I teach you hope and faith.

I am the disabled child.

~Author Unknown

Spreading the 3e Love

About a year and a half ago or so, a friend introduced me to a company called 3e Love. I immediately fell in love with the wheelchair heart symbol which Annie and Stevie Hopkins trademarked as the International Symbol of Acceptance. I think the symbol itself speaks volumes, but the message behind the symbol--embrace, educate, and empower--is powerful.

"3E Love is more than living disabled but is simply about living. Everyone has the freedom to live their life. We challenge you to do what you love, because you'll meet some amazing people along the way, and that, our friends, is how you'll enjoy this ride that 3E Love calls, life.


Embrace diversity. Educate your community. Empower each other. Love life."
- 3E Love Founder, Annie Hopkins (1984-2009)

Sadly, Annie passed away before 3E Love became such a success. Thankfully, her brother Stevie stepped up to the plate to continue their plan and fulfill their dreams of spreading awareness and their symbol. Curtis, Wade and I had the pleasure of meeting Stevie and his mom this past fall at the Abilities Expo in Houston. It was such an honor to meet them and thank Stevie in person for the amazing work he is doing. The wheelchair heart symbol has become such a part of our lives, and the message has significantly impacted our outlook on Wade's life.

In an effort to honor Annie, Stevie declared January 20 as International Day of Acceptance.
We spread our 3E Love and got family members in on the action as well!

Cousins Annabelle and Willow in North Carolina

Nonnie in Hampton, VA--I'm very proud of her self-photography skills:-)

Aunt Jordan in Richmond, VA

Wade and me in Fort Worth, TX

If you'd like to "wear your heart on your sleeve", 3E Love apparel and other items can be purchased here.  If you'd like to stay on top of this amazing awareness campaign, "like" them on Facebook and see what others are saying.  Stevie often shares coupon codes to the store this way as well!

WOW! Just...wow

I can't believe that we are in the year 2012, and I'm reading a blog post by a very distraught parent about her child being denied a transplant because she is mentally retarded! If you have not seen the post, you can find it here.

Amelia has Wolf-Hirschhorn Syndrome, which is a condition that can cause cognitive impairments. Children's Hospital of Philadelphia is refusing to grant her a kidney transplant because she is labeled "mentally retarded" and has brain damage. I'm still not able to wrap my head around this criteria! I can certainly understand that there is criteria one has to meet in order to receive a transplant, but how in the world is "mental retardation" a basis for this decision? Per the blog post, Amelia's mom stated that the doctor said, "She is not eligible because of her quality of life...because of her mental delays." If this is the main reason for the decision, something MUST be done! Who determines "quality of life" anyway? This is just another prime example that people with disabilities and/or perceived cognitive impairments are not seen as valuable and contributing members of society. And again, we are in the year 2012!

A petition has been started at change.org. Please sign it. CHOP has to hear from us and realize that using "mental retardation" as a criteria for a transplant MUST change! This little girl, as well as every HUMAN BEING, deserves the chance to live. It is not up to CHOP to determine whether she has quality of life or not. Without this transplant she most certainly won't have quality of life because she won't be here to experience it.

In fairness, I would like to note that CHOP has made a statement in regards to this situation on their Facebook Page. While I am glad they have acknowledged the situation, they have a long way to go to make this better.

Please, please pass this information along and share with others.

A Word

I've never been good at New Year's Resolutions. In fact, I'm downright bad at them. I think about all the wonderful things I want to do and change in the upcoming year. I make lists and charts and dream about how amazing things are going to be. I spend so much time preparing and analyzing that by the time the clock strikes midnight, I'm too exhausted to follow through. The idea of making resolutions is a lot easier than acting on them.

My resolution this year was to NOT have a resolution. It worked out pretty well! However, a friend of mine challenged me to choose a word for 2012. A word to live by for the year that can set the tone, encourage, and motivate. When my friend told me her word, and I read about it here, I wanted to steal it. It's a great word, but in order to really experience this challenge, I decided I needed give this a little more thought.

I thought back on the past few years and tried to figure out what was missing. I tried to look into the future and wondered what I would regret in years to come based on the way I was living at the moment. I thought about Wade and the stories he would remember and tell about his childhood, about me. The word came to me out of nowhere, but I think it's perfect. My word to live by in 2012 is...

It's no secret that I am scattered. My mind is always running a mile a minute, and I always seem to be behind the eight ball. I'm going here, there and everywhere, and if you ask me what's going on, I can't focus long enough to tell you. Many of the things I do are important (well, some of them anyway!), but I'm on autopilot. Sometimes I look up, and I don't know how I got from point A to point B. I'm moving through life just "doing" and not "experiencing". There's always something to do or somewhere to go. Life is busy, but I can--I MUST--slow down and smell the roses. I want to embrace life and really enjoy everything it has to offer.

This is your time
This is your dance
Live every moment
Leave nothing to chance
Swim in the sea
Drink of the deep
Embrace the mystery of all you can be
This is your time.
~ Michael W. Smith

A Year of Wade

Happy New Year!

"A Year of Wade"

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An Apology

I am a former special education teacher.  It is not a position that I sought out, but rather, it is a position that sort of chose me. 

When I moved to TX in the fall of 2003, I decided that it was finally time to decide what I wanted to be when I grew up.  I always had the desire to teach, but for whatever reason, I had avoided that path.  I enrolled in a program to become certified and also applied to become a substitute teacher.  My very first sub position was in a special education self-contained classroom as an assistant, which turned into a seven week long term job.  When I walked into that classroom, I didn't know what autism was.  I didn't know much about Down's Syndrome except that the kids were "so cute and sweet".  Needless to say, I didn't have a clue about an IEP or an ARD or what the heck LRE meant.  However, I quickly learned that I had finally discovered my calling.  That next school year, a teaching position opened at that same school, for those same group of kids.

In August 2004, my journey began.  I really, truly thought I was an empathetic teacher; not only with the students but with the parents.  Even though I didn't have their same experiences, I really tried to "walk a mile in their shoes" when making decisions.  Two and a half years later, I realized my empathy was probably really sympathy.  As nice and understanding as I tried to be, there was no way I could possibly understand their lives.  At least not to the depth of what I thought.  On May 22, 2007, that realization hit home like a ton of bricks.  As four and a half years have passed by, I have grown and learned so much more about disabilities than any book could ever teach me.  Having Wade has made me second guess a lot of decisions I made as a teacher.  I came across a blog a couple weeks ago that sums up my feelings exactly.  This blogger has managed to share the same thoughts, feelings, and regrets that I have had for the past four years.  The title of her post is:  An Apology From Your Child's Former Teacher.

Instead of writing my own apology letter, I thought I'd just let her letter speak for me.  You can click here to read it.  Honestly, I couldn't have said it any better.  I hope you enjoy reading Leigh's post.  The rest of her blog is amazingly honest and "real" as well.  Definitely a blog to place on your list of readings!

On Being Thankful

Curtis and I have been living in our house for seven years.  One afternoon, we were driving around "dreaming" about owning a home together.   Having only lived in TX for about seven months, I was not at all familiar with the area.  Every weekend, home developers put out their marketing to help guide you to the new neighborhoods.  I just kept telling Curtis to "follow the signs".   I had no idea where we were, Curtis kept telling me we were going too far out, but the signs finally led us to the neighborhood that would become our home just four months later.

During our first two and a half years in our house, we quickly became fast friends with a few other families on the street.  We were known to "do it up" like no one else in the neighborhood when it came to social events.  On Friday and Saturday evenings, we could all be found in someone's driveway enjoying the weather while gossiping over a few beverages.  On Sunday evenings, we would often gather at someone's house for a potluck dinner while watching Sunday night television.  The kids on the street became "everyone's" children.  Our street quickly became a village.  We even named our group; BOSS--Bent Oak Social Society--after the name of our street.

Between the two of us, Curtis is definitely the social butterfly.  In fact, some of the neighbors didn't even think I really existed for the first few months!  I had just started my teaching job, and my idea of a fun Friday night was laying on the couch watching TV.  I slowly came out of my shell and began meshing with our new friends.  Living so far from home (VA), these new people started becoming like family.  But as with family, things and people can start getting a little too close for comfort!  Misunderstandings and hurt feelings are bound to happen within a close knit group of people.  BOSS has definitely had it's fair share of drama over the past seven years.  Months have gone by where there was little interaction between some people.  However, as it seems to go with family, when you've experienced certain things and events with people, there's a bond that is formed that is really hard to break.  We've all certainly been in the middle of the drama, but in the end, it's that drama that has helped form such a deep connection.

I honestly didn't realize that strong, unbreakable bond until Wade was born.  Not only did mine and Curtis' life change, but our street was affected forever.  Instead of celebrating Wade's life at the hospital, our friends held a prayer circle in someone's driveway.  Instead of everyone coming to see mom and baby, people were splitting their time between two hospitals--some came to visit me at one hospital, while others went to support Curtis and Wade at the children's hospital.  Instead of a bunch of home cooked meals, we were receiving gift cards to local restaurants so that we could quickly grab a bite to eat to and from visiting Wade.

This group of friends rallied like no other.  Wade became the "Baby of Bent Oak"--BOBO.  There was always someone willing to step in and hold him or feed him or even change him.  The outpouring of love for our family was astounding.

Baby of Bent Oak

Over the years, a few families have moved, and a couple more have joined the circle.   The ones who have left the neighborhood are truly missed in the sake of proximity, but continue to stay connected and still come to participate in the festivities.  In only seven short years, the people of BOSS have grown and changed so much.  We have celebrated, and unfortunately, mourned lives.  We have stood on the sidelines watching families grow apart and other families grow stronger.  We have battled illnesses, job losses, and raising kids:-)  We have walked through some of the toughest hurdles together.  It has not been without many tears and angry words, but somehow we've become better and stronger because of all of these situations.

Today, Curtis, Wade and I celebrated Thanksgiving with some of these friends.  Unfortunately, due to distance and illness, we were not able to be with family.  During the blessing, I briefly reflected on some of the above.  It's not uncommon for a family who has a child with a disability to be "left out" or "forgotten" as the years go by.  Friends sometimes pull away while the family slowly retreats into their "new normal" of raising this child.  While I can't say I am a stranger to loneliness or that my heart doesn't break when I see other kids Wade's age running around outside, I can say that our family is truly blessed that Bent Oak has fully embraced us and supported us during some of the darkest days of our lives.  And for that, I am forever grateful and thank you all from the bottom of my heart.  Thank you BOSS for becoming our extended family.

Family and Friends at Wade's Baby Dedication