Take Me Out to the Ballgame

Wade is having a blast playing t-ball.  We've had games three Saturdays now, including a double header last Saturday.  Those little players were certainly worn out by the time it was all said and done!  We've been using a little trial and error to determine the best and easiest equipment to use while on the field.  The KidWalk gait trainer is my favorite because it allows Wade to be in a standing position.  When the fans are cheering, his little feet just start moving.  He doesn't go anywhere, but you can tell he sure would like to!

 

 

Unfortunately, by the end of the game, Wade is a little tired and cranky from standing in it.  It's a good thing we have options.

 

When Wade gets tired, sitting in his wheelchair does wonders for his mood.  When he's in his wheelchair, he doesn't have to work as hard, and he can relax a little.  The problem with the wheelchair is it is a bit front/top heavy with the small front casters and big rear wheels.  (we're in the process of finding a solution)  There's also a hole on first base line in the grass that you really can't see.  We've had a few near misses and close face plants!  But a few scrapes and bruises are good for the soul, right?

This past Saturday, we decided to try his adaptive stroller in place of his wheelchair when he was tired of the KidWalk.  I think this is a pretty good option because of the stability and ease of pushing.

My dear friend also volunteered her son to be Wade's t-ball buddy.  Elliot graciously agreed:-)  He's so kind and good with Wade.  But he has good practice since he's a wonderful older brother to two siblings.  It means a lot that he's willing to give up his Saturday mornings to help us.

 

Wade also has his fair share of fans.  I've talked about our neighborhood family before, and several neighbors have shown up to cheer Wade from the sidelines.  Of course his uncle and grandparents have been in the stands as well.  We are so amazingly blessed to have such a great support system.  It makes "stepping outside of the box" with Wade a little bit easier.  

 

Last Tuesday, instead of practice, we had to meet for team pictures.  Afterwards, we went to a local pizza place for dinner.  I took a change of clothes for Wade, but when I asked him if he wanted to change, he shook his head no.  When we asked if he wanted to stay in his baseball uniform, he raised his eyebrows and "nodded" his head--his sign for "yes".  I'm glad I listened to him because as we were finishing up, the family of one of Wade's teammates walked in, and the little boy was still dressed in his uniform.  I heard him say, "Mom, I want to go tell Wade hi!"  My heart about leaped out of my chest at the confirmation that Wade was accepted.  This little boy came over and held up his hand to give Wade a high five.  I helped Wade slap his hand as he giggled and grinned.  The little boy went back and said, "Wade gave me a high five!"  And this, my friends, is what it's all about.  Community.  Acceptance.  Friendship.

Play Ball!

It's official.  I'm a "T-ball Mom"!

I put my fears aside, bit the bullet, and signed Wade up to play T-ball for our local youth league.  I signed him up online, and there wasn't any space for comments regarding special accommodations.  So, I anxiously waited as I anticipated what the conversation was going to sound like once I talked to the coach about Wade using a wheelchair.  I was pleasantly surprised at his lack of "surprise" when I told him that Wade has a disability and that he uses a wheelchair and communication device.  I let him know that I had absolutely no expectations except that I wanted Wade to have fun and be around kids his age, in his community.  I explained that I really didn't know what this was going to look like, but we could all figure it out together along the way.  After all, it's *just* T-ball, right? 

As we drove up to the practice field two weeks ago, I nervously wondered what I had gotten us into.  This may be "just T-ball", but these little guys had bat bags and cleats and helmets!  My mom, Curtis and I cautiously walked up to the team while we explained to Wade what was happening.  He just kept shaking his head "no".  I questioned my decision and wondered if this was a mistake.  As we stood there trying to figure out what to do next, Curtis realized he knew one of the dads.  Thank goodness!  It broke the tension a bit, and we spent the next 30 minutes or so practicing hitting the ball off the stand.  That was the easy part.  It didn't take too much improvising to figure out how to make batting work.  We also made note to bring his KidWalk gait trainer the next week so he could stand while batting.

The creative part came when the team started practicing in the field.  The coach would hit a grounder to each kid, and they would stop it and throw it to the assistant coach.  I watched a bit from the sidelines as Curtis stood out in the field with everyone else.  After a little time passed, I went out and we decided that another little boy would take a turn with Wade out in the field.  When the coach hit the ball, Curtis would push Wade and stop the ball with his wheelchair.  Then, the other little boy would get the ball and throw it to the assistant coach.  It worked like a charm!  Wade kept saying, "Again.  Again."  It was so exciting to see him loving being out there.  While he waited his turn, Curtis helped him play catch with another kid.  Curtis would position the ball in Wade's hand, then move his arm in a throwing motion.  The kid would catch it, then throw it back to Wade.  After a few times, Wade was actually gripping the ball by himself, and Curtis was helping him throw by just moving his arm.  So Wade was actually releasing the ball on his own!

At the end of practice, we were able to tell the other parents a little bit about Wade and that we just want to have fun.  We also explained that we welcome any ideas on how to make this work for everyone on the team while also expressing that we're not easily offended by any questions.  Kids and adults are very curious, and I'd rather be open about everything instead of having them wonder what in the world we're doing.

Once we loaded back into the van, I felt like a huge weight had been lifted off my shoulders.  We branched out and participated in a typical four year old activity, and it all worked out.  I was so relieved that Wade was accepted.  But more than that, I was thrilled that Wade had fun and enjoyed playing with the other kids.

Our second practice was last week, and we broke out the KidWalk.  The kids practiced hitting the ball and running the bases.  Wade had a great time, but he has to work on patience and turn taking quite a bit!  He didn't like waiting his turn in the line up.  But how exciting is that?!?!  Every four and five year old has a hard time waiting their turn.  We're learning social skills in a natural environment!  Woohoo!

I was able to capture a little bit of base running on my phone.  Wade's feet aren't really touching the ground, but he's moving them!



Practice number three is tomorrow evening.  Team shirts will be given out.  Wade will then be a certified Saginaw Ranger!

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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