An Official, Unofficial Announcement

The official part?  Our family has grown by one.  The unofficial part?  It won't be legal for six months.  On March 23, 2013, a bright eyed, sweet, innocent, and energetic 3.5 year old little boy came to live with us.  In a brief instant, our lives were forever changed.

For a couple of years, Curtis and I have discussed adoption.  We've questioned baby or toddler; child with or without a disability; foster to adopt through child protective services or adopt through an agency.  We never quite decided on anything.  I prayed many times for God to just place something in my lap.  As it turns out, that's exactly what He did.  We didn't have to have answers to any of our questions because He made the decision for us.  (Not that I didn't question His plan...don't we always tend to initially question Him when we're uncertain?)

Jordan comes to us from a family member.  In order to respect the privacy of all parties involved, I won't go into the details.  Suffice it to say, we have known Jordan since he was born, although we (Curtis and I) have not spent a lot of time with him to date.  However, he and Wade have been together a lot, and they get along well.

We are beginning the process of a formal adoption.  Both the mom and the dad have to sign over their rights.  Once this is done, they each have only ten days to change their mind.  Because we are not immediate family, we have to go through home studies and background checks.  After this is approved and Jordan has been in our home for six months, we can go before the judge and make this all legal.

The past month has been quite challenging and different for us.  Our normal--raising a child with a disability--just got turned upside down.  Going from having one child who is non-verbal and uses a wheelchair to another child who walks, runs and talks quite well is...interesting!  One is not harder or easier than the other; they both have their unique challenges.  One of my least favorite things to do is feed Wade.  It seems to take forever!  Seriously, I'd rather clean the toilets!  It's so nice to be able to put a plate of food in front of Jordan and he can feed himself every.last.bite.  On the other hand, Jordan can make our house look like a tornado just went through in a matter of minutes.  We've never had to worry about stepping on toys in the middle of the night before.  It's actually quite a nice balance.  I don't feel so locked in "disability world" now that we have Jordan; I have a healthy balance of both worlds.  I'd be lying if I said it doesn't hurt my heart a bit to see Jordan running and playing and asking all those curious questions that I know are running through Wade's head.  But thankfully, those thoughts only last a brief moment as I watch Wade laughing at all the silly things Jordan does.  I also know that Jordan is going to be a more accepting and considerate person growing up in our home as Wade's new brother.

We decided that the boys would share a room, so we invested in bunk beds; a twin over a double.  We've been having a lot of trouble with Wade sleeping through the night since he got his g-tube last June.  After months and months of MANY middle of the night trips to reposition Wade and trying to figure out what was going on, I think we've discovered the problem--night time reflux.  Since we were getting new beds, we decided to get a foam top mattress (similar to a tempurpedic bed) with an adjustable base so that we can incline the head and/or foot of the bed as well as set it to vibrate.  Dare I say it out loud, but Wade has not woken up the past four nights!!!  Jordan goes to bed a lot easier when it's time as well.  He LOVES the top bunk!

We're still trying to get into the groove of things around here, but at least our house is finally put back together after switching bedrooms, putting down new carpet in the two bedrooms, selling some furniture and just reorganizing to make room for the new little guy!  The first week was a little rough, to say the least.  Jordan definitely tested his boundaries and limits, but it was amazing to see his transformation in just one week.  We've gone from running off out in public, fighting bedtime, etc. to him telling me, "I don't want you to count to three," when he knows he's making the wrong choice.  To be honest, while I knew this was the right decision, I did question whether or not I could love him as my own.  It was my biggest concern, and I let his mom know this as well.  But after just a few days with us, I knew it was possible.  Jordan has filled a certain hole in my life that I didn't know I had.  While it's not always easy, and we're learning how to raise a typical child as we go, our decision just feels right.

Oh!  And for those who have caught on to his name...his first name is the same as our last name.  We're not too sure what we're going to do about that.  He certainly can't be Jordan Jordan for the rest of his life!  But since that's our biggest worry at this point, I'd say we're truly blessed!

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

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

 

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: tumblr.com via Jennifer on Pinterest

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 all.by.himself!!!  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!

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.

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