Shabby Miss Jenn

Wednesday, December 26, 2012

Already?!?! The End of December

How can we possibly be at the end of December?  How can we possibly be at the end of  December and I haven't posted anything about Wade's kindergarten experience?!?!  Although Wade has been in school for two years, it still didn't make the first day of kindergarten any easier.  It's still such a huge sign that he's growing up!

Wade is in a general ed classroom with about 20 other kiddos.  He LOVES it, and better yet, the kids love him.  At the beginning of the school year, Wade was sent home early for a fever so he missed the next day as well.  The next day in his backpack was a card from one of the sweet little girls in his class.  Notice how she captured his wheelchair!  Such a little artist!  The day after that, he got yet another card from another little girl.  I think we're going to have to keep an eye on him.  He seems to be quite the lady's man!

Wade was also invited to his very first birthday party that didn't involve me knowing the parents.  That was a HUGE deal for me.  It was a sign to me that he is building true and authentic friendships.  That's the great thing about kids.  They're able to see past disabilities a lot easier than adults.  It makes my heart happy when I pick Wade up after school and he's surrounded by other kids.  They include him because they want to, not because they have to.

We also decided to try another season of t-ball this fall.  Wade ended up on a different team than the one he was on in the spring.  This season was actually t-ball and not blast ball; meaning you play for 3 outs or 5 runs and there are umpires!  So, a real game!  We all had a great season and again, the kids were fantastic with Wade.  The adults cheered him on just like they did every other kid on the team.  The kids even helped Wade with fielding and hitting sometimes.  It was definitely a team effort to make the experience successful for all.

Wade developed a pretty good friendship with one of his teammates.  Easton told his mom he wanted Wade to spend the night with him.  I thought having Easton at our house was probably a little more practical.  As a result, Wade had his first sleepover.  I think Curtis was more excited than Wade!  After practice, they went out for pizza, came home and built a fort, and then fell asleep watching a movie.  The next morning, they got up and went to breakfast and headed to Cabella's to do some "man stuff".  They bought some nerf guns and had fun with those and attempted to have a wheelchair race.  Wade ended up head planting into the grassy curb, but it didn't phase him at all.  When Easton's mom asked him what his favorite part was, he said there was too many things to name!  So, I'd call the first sleepover a success.  I see many more in our future.

As for actual kindergarten, well, it's been a learning experience for everyone.  Wade's team of teachers and support staff are absolutely wonderful.  They are open and eager to try different approaches so that Wade can be included like all the other kids.  At the beginning of the school year, Wade's teacher told me she took him down the slide as another teacher stated, "Are you sure you want to do that?  What if he gets hurt?"  The teacher's response was, "I can guarantee you mom would rather him get hurt than sit here in his chair doing nothing!"  How great is that???  A teacher that knows and understands that I want Wade to experience life, not just be on the sidelines.  One day she texted me and told me she decided to pull out some instruments because he gets such a kick out of people knocking on the door.  Turns out Wade was able to use the instruments to do "soft" and "loud" and then he used the instruments to demonstrate syllables in words.  Of course Wade uses his head to "play" the instruments, but I'll take it!  I love a teacher who thinks outside the box.  I think she needs to move up to first grade with him next year:-)

I don't want to lead everyone into believing that this school year has been easy, because it hasn't.  This inclusion thing is tough, especially with a kiddo who is as physically involved as Wade.  However, through much open and honest communication with the district, I believe we are all beginning to land on the same page.  My advice to those who are on this same journey is to stand your ground and do what's right for your child.  There is a way to get your point across without ruining relationships in the process.  This is a difficult and emotional road.  There are times I want to give in and give up.  But I keep trudging on for Wade and for those coming behind him as well.  When I see Wade's face light up when we talk about school, I know the hard work is worth it.   

Inclusion communicates something more than "integration".  It means people participating in families, schools, (and classrooms), in work places, and in community life.  "Inclusion" implies that people are welcomed, that each person reaches out to include another person.  Inclusion is different from "letting in" or "adding on."  Inclusion conveys the idea that we appreciate each other, that we see each other's gifts, that we value being together.  Inclusion speaks to the importance of relationships.

 ~ TASH newsletter June 1990

Tuesday, November 6, 2012

Our Vision for Wade

It's been a long time. A really long time. I've had a lot of great things to post about, but the not so great things have invaded my thoughts and my time. I hope to get back to blogging soon, but for now, I thought I'd share our vision for Wade. I think it's so important to have a vision that is written down that can be shared with others. This way everyone knows what your expectations are. When you're questioning certain decisions, you can look back at your vision and ask yourself what is going to best help you accomplish this vision.

I've known about vision statements and student portfolios for awhile now. I talk about their importance and encourage others to come up with a vision for their own children. I've just failed to sit down and write one myself. But as always seems to happen, I found myself in a position where I really needed a vision. I needed a way to articulate to those who are in the position of educating Wade what we want and expect for him. I shared this vision with everyone at the table at our most recent ARD meeting last week, and I plan on reading it before every ARD meeting in the future. I think it's a quick and easy reminder about why we are gathered at the table and who we are there for; we are there for Wade.

For more information about vision statements and student portfolios, visit Texas Project First.  They have some sample portfolio pages.  I used wording from a few different samples and molded them into our vision for Wade.

Our Vision for Wade

We have a vision for Wade; a vision that goes far beyond the walls of a school building.  Our vision started out pretty simple, for Wade to be included.  As the years have flown by our vision has begun to evolve into something even bigger.  Not only do we want Wade to be included in his school, neighborhood, and community, we also want him to be a contributing and active participant in his own life.

It is also important to us that Wade be surrounded by people who love, support, and care for him in a way that fosters his independence without creating a sense of “learned helplessness”.  We want Wade to be a part of a community where differences are accepted and attempts are made to educate those who may be fearful or ignorant with regard to the culture of disability.  We believe that language and words are powerful and see value in using People First Language where Wade as a person is put before his disabilities.  By modeling this language, we are attempting to eliminate the prejudice that surrounds those who have a disability while encouraging others to see past the disability.  Wade is the amazing little boy he is because of his cerebral palsy; it is a part of him, but it does not define him.

As Wade’s parents, we are an integral part of the team that supports him and his education.  It is vital that the lines of communication remain open and that the staff working with Wade support our vision for him.  We cannot do this alone.  It will take all of us working together to make school a place where Wade can be successful and thrive both academically and socially.  Comanche Springs Elementary is part of the foundation Wade needs in order for him to achieve whatever dreams he desires.  We are confident that when given the same opportunities as every other child, Wade will find his voice and be successful in school, community, and life.

“My identity is the product of my history. My history is that of a person with cerebral palsy. If I didn't have cerebral palsy, I wouldn't be who I am; I'd be someone else. Frankly, I like who I am, I like my history, I like my life. I'm not sure I'd sacrifice who I am for the sake of normal movement and speech.” ~ Norman Kunc


Wednesday, September 5, 2012

A Day Late and a Dollar Short

World Cerebral Palsy Day was...yesterday.  But, such is my life, I always seem to be a little late to the game.  I've known for awhile that it was coming up on September 4, but I just didn't plan my day well enough to post on time.  So in honor of World Cerebral Palsy Day, and in honor of Wade and everyone else out there with CP, here's an awesome video that I first saw on a blog I follow, Unexpected Lessons.

After I shared the video with Curtis, he asked me what I would have told myself on the day Wade was born; the day our lives were turned upside down.  You're a lot stronger than you ever imagined you could be.  My words to Curtis would have been, You'll make new dreams.  What would Curtis have told me, knowing what we know now?  You're gonna do awesome!

The journey isn't always easy, and it's certainly filled with many obstacles, but this life--raising a child with cerebral palsy--is the most fulfilling ride I've ever been on.  It's changed me in ways I never imagined and I look forward to all the wonderful and amazing experiences it's going to bring.

Source: via Jennifer on Pinterest

Friday, August 24, 2012

All Good Things Must Come to an End

It's upon us; the last weekend of summer.  On one hand I'm very excited to start a new chapter in Wade's school career.  On the other hand, I'm surely going to miss our lazy, carefree days.  But it will do us all good to get back into a routine.  School starts at 7:40 this year!  Yes, you read that correctly.  The kiddos can be dropped off as early as 7:10, and they go back to their classrooms at 7:20.  Thank goodness the school is just around the corner.

We had a wonderful summer, and I took a much needed break from reality:-)  Wade had his g-button surgery on June 19, and about a week later, we were headed to VA for three weeks.  We celebrated July 4 with the family.  My mom even arranged to fly my brother in from FL as a surprise to everyone. It's been a few years since all of the siblings, spouses and nieces/nephews have been together at one time.  It was a much needed--but way too short--reunion with everyone.
Wade and his new cousin Rowan
Siblings, spouses, and kids
During that week, Curtis was also interviewed by 3E Love for our family to be "3E Lovers of the Month".  We all took the opportunity to put on our 3E Love tee shirts and pose for a family picture!  You can find the interview here if you missed it.

While in VA, we took a trip to Water Country, USA in Williamsburg.  Wade had a blast!  I wish I had pictures of him going down the waterslide!!!  He loved it!
This is NOT Wade, but it is the slide he went down alone. 

Malibu Falls--Wade sat in my lap and laughed the whole time!
Big Daddy Falls--Again, not our family, but Wade loved laughing while his Aunt Jordan screamed in fear!

As a result of that exhausting adventure, I decided that if I didn't want that to be Wade's last trip to the water park, this mama needs to get herself in shape!  It takes a lot of energy and stamina to carry Wade up flights of stairs to go down water slides all day.  As soon as we got back to TX from VA, I came up with a plan, and I'm proud to say I've stuck to it.  More info on that later!

Curtis was only able to stay in VA for a week.  After he left, Wade and I went up to Northern VA to see one of my dearest friends.  We ate at a wonderful restaurant in Old Town Alexandria and spent the evening visiting some shops and the waterfront.  It was great girl time...with Wade in tow of course!

My dad also took us out on his boat, and Wade was able to watch him catch a fish!

On the boat
Nonnie, Wade, and Grandpa
Once back home in TX, we've spent the rest of the summer swimming, relaxing, and hanging with friends.  We also battled the heat a few times and headed to the zoo for some morning outings.  All in all, it was a very successful summer.

While we were in VA, I was able to spend some time with my grandmother.  She had been in the hospital and a nursing home for a few weeks for blood clots, but was able to come back home while I was still visiting.  I am so thankful for the time we got to spend with her because only about three weeks after I got back to TX, she passed away.  I hopped a plane and took another unexpected trip back to VA by myself for a few days.  Although the circumstances were not desirable, I had such a nice time visiting and spending time with family whom I hadn't seen in such a long time.  Grandma is certainly going to be missed, but she leaves behind a large and beautiful family.
Our family--minus Curtis and Wade
All the grandkids
Everyone together--minus a few that couldn't make it.

So, that's our summer in a nutshell! It's now back to reality!

Sunday, July 1, 2012

A Long Time Coming

We finally bit the bullet.  After a few years of wondering and going back and forth, we scheduled surgery for Wade to get a g-button.  For those who don't know, a g-tube/button is a tube that is inserted through a small incision in the abdomen into the stomach.  The purpose is so that feeding can be done directly through the tube into the stomach.
Microvasive G-button
Wade eats like a champ.  We have to chop his food up or give him things that are easily mashed, but for the most part, he eats well.  He doesn't chew food well and typically sucks food more than he chews, but he makes it work.  There have only really been a handful of times that he's choked on a piece of food that was too big.  I've also seemed to notice that when he goes through a growth spurt, he has a harder time coordinating his oral motor movements.  My theory is that it just takes him a bit to adjust to his body growing.

Even though he eats well, feeding is still a huge source of stress in our household.  If I'm being honest, it ranks pretty high up there as one of my least favorite things to do.  It takes so much time and effort to feed him since he doesn't have the physical ability to feed himself.  Add feeding him on top of feeding myself, and we can end up at the dinner table for well over 30 minutes.  The effort of doing this for three meals a day plus snacks here and there is exhausting.  Not just physically, but emotionally as well.  Wade burns so many calories because of his constant muscle "movement".  Sometimes I'm worried that he's burning more calories than he's consuming.  For a couple of years, he stayed at 27 pounds.  He was growing taller and skinnier.  We finally passed 30 pounds this past fall.  Now, he stays right around 31 pounds; even hit 34 pounds one time!  His nutrition, hydration, and weight are always weighing on me.  It's such a tough call because while I want him to gain weight, I don't want him to get too heavy since I have to lift and move him so much.

With our feeding success, I guess you're wondering what made us go the g-tube route.  It basically boils down to hydration.  Wade is not getting enough fluids to keep him properly hydrated--especially in this Texas heat!  We're lucky if he finishes a whole sippy cup or box drink of juice or milk in a whole day.  Six to eight ounces of liquids in one day just isn't cutting it.  His fluctuating tone also makes drinking difficult for him.  Some days he can suck out of sippy cup (we remove the plastic valve) without any problem.  Other days he can't coordinate his sucking, swallowing and breathing and ends up choking.  Once he chokes and coughs, he pretty much refuses to drink anything else for the rest of the day.  Which makes sense; I wouldn't want to drink anything if I choked every time I swallowed.  We've had a few swallow studies, and on our most recent one--last Monday--things looked good.  He swallowed well and did not show any signs of aspiration.  But again, with his fluctuating tone, it all just depends on the day.

As I mentioned, we did not come to this decision lightly.  There were days that things were great and I doubted the surgery.  Other days I was almost in tears because Wade wouldn't drink anything.  A friend gave me some excellent advice.  She told me to just treat the tube as an insurance policy; when we need it, it's there.  That little bit of advice sealed the deal for me.  Just because we have the tube doesn't mean we have to use it.  It's there for the days his tone is sluggish, or when he's sick, or when he has a growth spurt.  We can still feed him orally like we do now, but if it's a day I'm worried about his caloric intake, I can just supplement with some pediasure.  My plan is to give him about 4-6 ounces of water three times a day via his tube in addition to the little bit he drinks with his meals.
Wade's first attempt at feeding in the hospital.  He fell asleep right before we hooked him up.
I'm really happy that we made the decision to get the tube.  The weight that lifted from my shoulders after surgery was amazing.  I really didn't realize how much anxiety I was experiencing due to hydration and feeding issues.  The actual surgery was super quick.  From the time he went back to the time they let us know he was out of surgery was less than 30 minutes.  We were able to get a room fairly quickly, and we stayed the night at Cook Children's Hospital.  We got home around 8:30 Wednesday night June 20, and unfortunately, we have not had a peaceful night's sleep yet.  Wade ended up running a fever that Saturday until Sunday.  On Tuesday--a week after surgery--I took him to the pediatrician to see if he might have an ear infection.  I was really praying that it would be the answer to our hourly wakings of screaming and crying.  Unfortunately, there didn't seem to be any signs of ear or sinus infection.  Our pediatrician mentioned that he might be having nightmares.  Whatever it is, I hope it ends soon.  The situation was also made a little worse because we traveled from TX to VA Thursday night.  Considering it was a 23 hour trip, Wade did really well.  Hopefully we'll settle into a good sleep routine here shortly.
Halfway to VA!  Getting hydrated after breakfast at Cracker Barrel.
Besides our sleep disruption post surgery, the only complaint I have is with the actual button.  Our surgeon opted to go with the microvasive button initially.  The problem is, the little flap that closes the hole when it's not being used sometimes pops open by itself.  It has also leaked a few times.  The microvasive is supposed to last Wade about a year, but if the leaking continues or I can't find a good way to keep it closed, we'll probably make the switch to a Mic-key or Mini One button sooner than later.  I did make some really cute tube pads to help absorb the leaks.  Other than that, the site is looking pretty good, and we've had no issues with granulation tissue...yet:-)
Reusable cloth tube pads.

Sunday, June 10, 2012

Avoiding the Unavoidable

Wade's fifth birthday has come and gone; the birthday that I've been subconsciously anticipating pretty much since his birth on May 22, 2007.  From early on, everything I read mentioned so much about early intervention and how the brain develops so much between birth and age five.  There were times that I got so hung up on this medical view and somehow convinced myself that once he turned five, our attempts at different therapies to make his life easier wouldn't be effective.  I know it sounds silly, but I wanted to take advantage of that "brain pliability" as much as I could.  Looking back, I realize how much pressure I put on myself.

At Christmas time, I decided we were going to have a big shebang for Wade's fifth birthday.  Five years old is a big deal for any kid.  It's one of those milestone birthdays.  It was an even bigger deal to me because I had put so much emphasis on those early learning years.  So much so that I completely overwhelmed myself and went into my famous shutdown mode.

As the weeks drew closer, Curtis, my parents, my in-laws and my friends were constantly asking me when we were having his party.  We have family out of state, and they needed to know so that they could make travel plans.  Selfishly, I kept procrastinating.  I made the excuse that I had other things that took precedence.  We were in the middle of a disagree IEP meeting at school; it was the end of the school year; Wade's annual IEP meeting was coming up; he had multiple doctor's appointments; the list goes on and on.  Another overwhelming factor for me was that it seemed my worlds--my pockets of friends from various backgrounds--were starting to collide.  I didn't even know where to begin with invitations.  Our house is only so big, and when I started thinking about everyone, it was just too much--t-ball friends, school friends, church friends, friends we've met in "disability world", family, neighborhood, etc.  We are actually very, very blessed to have this "problem", so I'm not complaining.  I just didn't know how to make it easy.  Needless to say, my family never got plane tickets booked, and I never planned for the big event.

Monday morning, the day before Wade's birthday, I called Curtis and asked him to invite his family to dinner the next night and invite the neighbors for cake and ice cream.  We ended up having a very nice, impromptu party.  Wade enjoyed the attention, and I felt a little less worthy of receiving "The Worst Mommy of the Year Award".  I also mustered the energy to take cupcakes to Wade's class that afternoon.  (store bought cupcakes of course!)  The kids loved them, and it always makes my heart so happy to see the kiddos interact with Wade.

I'm a little sad that I allowed the fear of reliving Wade's birth to practically paralyze me.  I really didn't know the full extent of my sadness until I went to bed the night before his birthday.  As soon as my head hit the pillow, the tears began to flow on their own.  My mind was taken back to the days and the moments I was trying so hard to avoid.  Although Wade's birth was the scariest day of my life, it's also a day I wouldn't go back and change.  The memories are sometimes painful and overwhelming, but the wonderful life that has grown from that traumatic event is the best thing that has ever happened to me.  In just five short years Wade has taught me the true meaning of unconditional love.  He's the face of hope, determination, and strength.  He's more than I ever, ever dreamed of.

“My identity is the product of my history. My history is that of a person with cerebral palsy. If I didn't have cerebral palsy, I wouldn't be who I am; I'd be someone else. Frankly, I like who I am, I like my history, I like my life. I'm not sure I'd sacrifice who I am for the sake of normal movement and speech.”  ~ Norman Kunc, In Spite of My Disability

Sunday, April 8, 2012

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.

Monday, March 12, 2012

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!

Wednesday, January 25, 2012

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

Saturday, January 21, 2012

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!

Saturday, January 14, 2012


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 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.

Sunday, January 8, 2012

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