Keep Moving Forward

Life can really be stressful, right?  At times I feel so overwhelmed, I want to go MIA (Missing in Action), disappear for awhile, hide under a rock somewhere.  I feel like I am sinking under a huge pile of paperwork and clutter…can’t breathe.  I have run into some of you recently and you have asked for an update on the eye-gaze communication device that we have been trying to get for Raymond.  Well….we are still waiting on the insurance company to render a decision.  It has been 7 months now and I feel like we are going around in circles, or just plain being ignored.  That is one of the many things that I feel are bringing me underwater where I can’t catch my breath. 

But leave it to our amazing Raymond to teach me to get over it and just keep moving forward.  Today in Physical Therapy, Raymond got into the “crawler” (a creatively made contraption adapted from a special walker which gives Raymond the chance to get on all fours to crawl). We got Raymond placed in the crawler as I warned his therapist that he was having a rough day with some spasticity.  He immediately started pushing forward with his knees, not using his hands, he was propelling himself forward.  We started our typical cheering for him when he pulled his left arm out and forward as if to finally utilize his hand in the crawling.  Caitlyn and I stared in shock at each other and began cheering because he had never done this before with his left arm, only his right arm and only occasionally.  But WOW, his left arm!!  But our cheers suddenly stopped as we realized he was having a seizure. Oh poor Raymond, I grabbed and steadied his head and talked him through the short 20 second seizure.  We are having trouble getting his seizures under control, but he has never had one in therapy before. This was new territory for us, so as I was comforting him, he came out of the seizure and looked around.  As I looked over to his therapist to see about pulling him out of the crawler, he started pushing with his knees again, and pushing more than he was before the seizure.  The longer the seizure lasts, the more fatigued he is, but this was short and seemed to not affect him.  He continued to push himself forward another 50 or so feet.  Raymond did not let this stop him from his goal of crawling.  And the best part is he did pull his right arm forward, which he has done before every once in a while or so…..but today he pulled his right arm forward 4 TIMES!!!!

Oh Raymond, thank you baby for showing me to not let life get me down, to overcome, to push forward.  With God, all things are possible.  Raymond, you truly teach me to have faith.  From Joshua 1:9 “Have I not commanded you? Be strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go.”

I cannot let stress control me or pull me underwater.  I must just keep moving forward, pushing myself as our amazing son Raymond does.  The insurance company may think that if they keep prolonging this request I might just go away…..but I am just getting organized!  I need to keep pushing for Raymond!

Susan

Raymond's "Normal"

I just want to first say thank you to all who follow our blog, and second to apologize for my lack of posting.  Life has really been throwing some us curve balls the last few months, and Raymond has had a rough time recently.  His condition is very complicated, and continues to get more complicated, so his “normal” just changes. 

Raymond normally smiles and is relaxed, giggles and loves activities with family and friends.  Sometimes Raymond’s normal is slightly spastic, his muscles get tight and he can get uncomfortable.  So on those days we take him out of his wheelchair, stretch him and put him in his walker, just try to change things up.  Within the last two years he also started having seizures, so there is another item that has become one of Raymond’s “normal” issues.  I could keep explaining, but let’s just say that Raymond’s normal is different everyday.  I never truly know what kind of day Raymond will have, and have to just go with the flow when my expectations for the day are different than life’s reality.  Raymond even has really bad days that through reoccurrence have become part of his “normalcy” that we try hard to avoid.  For instance, last Friday he woke up smiling and we began our morning routine of meds, stretching, bathroom, etc.…..but after doing his morning “business” on the potty chair, he went into an episode of dysautonomia.  What is that you ask?  He very quickly got sheet white, ice cold, completely lethargic and clammy, basically flu like symptoms within minutes.  I immediately started our “normal” routine to get him out of this state and to get his GI (gastrointestinal) system working again.  His bouts with dysautonomia will last anywhere from one hour to a few hours.  Sometimes these episodes have lasted 5 or 6 hours with vomiting and land us in the ER. So on Friday I quickly began pulling air out of his stomach through his feeding tube, and a few other tricks…within 2 hours, we got him back to himself again and he was able to handle his morning feeding.  Once he started flashing that beautiful smile again, I knew for the most part he would be ok….so I called his nurse to say we were on the way to school.

I could not handle all of Raymond’s “normal” days without the Lord’s love and guidance.  Raymond’s normal routines are so varied, and to see Raymond go from smiling to very ill within minutes is very scary, but through love, gentleness, and determination, our smiling Raymond returns.  I will do anything for my boys, I love them unconditionally, just as the Lord loves us. 

I am so glad that Friday was a quick recovery for Raymond and that he was able to be at school.  This picture was taken as I got him to school that morning with his nurse, Kaylee, and his aide, DeAndre.  His class was making buttons for a classmate who has been in the hospital for over a month in ICU.  Our family has been praying for her healing and hoping she comes home soon.  Skylar's smiles are contagious like Raymond's.  In this picture we are all wearing buttons that say ...”Give a Smile for Skylar”.  So, will you join in Raymond and Skylar's beautiful way of spreading love by sharing a smile today?

Football? Yes…Football! #00

I Love High School Football! We love going to support and watch our son Roman at his games.  But never in my wildest dreams did I think Raymond would be on the High School JV Football Team!!!!! We have a lot of dreams for him….but football?  Well, on Oct. 12^th, 2012….we got the biggest surprise….and boy was it a surprise! 

There was an announcement to the families to come early on this particular Friday.  I knew we had been trying to get all of the parents together for a “family” photo.  Our JV families have really bonded this year as we have been gathering to feed all of our 50+ hungry boys the night before each game.  So off to the field Raymond and I go, my poor husband was a little late because he was helping his family and didn’t know he would be missing anything.  This was a complete surprise.  Some of you might have already seen this video, not only did a friend post it on You Tube and Facebook, but the story also appeared on Channel 17 News the next week.

Raymond has always lived life with us or through us, going where we go, doing what we do.  But what these coaches, team, parents and school have done for Raymond is far more than what we could have ever have done for him.  Friendships started developing without us having anything to do with it.  We started hearing stories of the team coming up to him at school to say hi or give Raymond “Bumps”, and we heard about Raymond’s huge smiles that resulted from those encounters.  We had a Varsity Cheerleader come up to us at a football game to share a picture they took at school with Raymond.  You should have seen the smile on his face in that picture, too cute! He is such a flirt! Friendships are not easy to develop, and for a child who is non-verbal, it is even tougher.  But for our new Football Player, #00, friendships are one of the most important gifts this amazing JV team gave to Raymond, and for that we are so grateful.  I was already impressed with Centennial last year when Roman started attending, but the school continues to amaze us.  And for Raymond, this has started as the most amazing Freshman Year…Go G-Hawks!

Raymond Loves His Stephanie



I just had to post this cute video.  One night recently after Raymond’s brother’s JV football team dinner, I caught this precious moment of one of the team moms giving kisses to Raymond.   And Raymond LOVES to get kisses from Stephanie.  This bond between them started at a football game earlier this year in Clovis when she was walking in front of him while we were heading up a steep wheelchair ramp.  He started to giggle, and each time she turned around to look at him, he would giggle louder.  She finally turned around and asked..."Raymond, are you looking at my butt?"  Oh my! The giggles got louder and bigger.  We were all rolling and Raymond was in the best mood for the rest of the evening.  Now Stephanie and Raymond have this infectious bond.  He is such a flirt.  I so love that the Lord continues to bring some amazing people into our lives. And for me, watching Raymond with his sweet giggles can brighten any dark day.  So, please enjoy this fun video that I have titled..."Raymond Loves His Stephanie."

  

Is it October Already? EEEEK!

Let’s take a step back in time.  I love to be creative; I just don’t always have the time.  Back in 2007, Lil’ Roman had decided to dress as Albert Einstein for Halloween and we had a Jeff Gordon costume for Raymond.  We had gathered the spray for Einstein’s gray hair and the mustache, coat…Roman really looked the part….but, the NASCAR uniform just seemed a little plain to me.  So, a few days before Halloween, I started building a car out of boxes, even stayed up past midnight on Oct. 30^th painting the thing…..and BAM!!!  Raymond was a NASCAR Driver!  He even had a toy steering wheel on his lap with car sounds. 

Well, that started something….boy did I really do it to myself.  People started asking me….what will you do next year? The pressure was on!  Well, I have no clue sometimes how I pull it off each year.  In 2008 it was Star Wars, the body of Roman’s Clone Trooper costume was entirely poster board.  In 2009 we did an Army theme.  Raymond giggled all night while trick-or-treating as our neighbors would put the candy into the cannon of the tank, it would slide down and land in Raymond’s lap (They wanted to keep giving him more candy, I begged them to stop. He doesn’t eat by mouth…so why do you think I gain extra weight each Halloween?)  In 2010, Lil’ Roman had decided a year in advance to be a Roman Soldier, so I had plenty of time to plan.  Rome helped me research the shields and different chariots for Raymond.  Some of Rome’s friends decided dressed up too…four costumes instead of just 2, but it was so much fun.  Last year, in trying to do something more geared for teenagers, we did the Green Hornet. Rome was the Green Hornet and Raymond was Kato in the Black Beauty.  I had the most fun with that car. 

Now….what in the world do I do this year????????????  It is now Oct. 9^th and I still have no clue!  EEEEK!

2007

2008

2009

2010

2011

Raymond's Dishes

Boy it was hard to get up this morning; my eyes just did not want to open, I am tired.  Raymond on the other hand usually wakes up with a smile, and this morning he did.  He had a rough evening and had dealt with some intestinal pain last night. After his morning routine and medical treatments, he was all smiles when the bus came to get him. He absolutely loves high school.  We can tell from his smiles and giggles, even if he can’t use words to tell us yet. After getting the boys off to school, my eyes were finally open after a few cups of coffee.  I had a brief thought about going back to bed, our weekend had been crazy busy with Lil’ Roman’s football and Raymond’s basketball (will have to post on that soon…..so fun!).  This weekend was all about family and memories.  But the job of a mom is never done….right?  We all have the normal chores, laundry, cleaning, dishes, etc.  Well, off to the sink I went to catch up on Raymond’s “dishes”. If I could only keep up on this daily, it would not be so tedious, but with our crazy weekend, the supplies we use to feed Raymond had stacked up.  After 1 hour and 30 minutes of carefully washing his supplies, I finished.  I was catching up with a friend on the phone as I washed, multi-tasking at its best.  This is just a part of our life with Raymond.  Yes, a nap would have felt wonderful, but when I see Raymond smiling and having fun at school, it makes all the tedious, sometimes hard or grueling work so worth it. I am just grateful to the Lord that we have our boys’ everyday to enjoy, love on and, yes, do chores for.

Raymond’s “Dishes”

“Off Her Rocker”

“That woman is off her rocker!”  That was the impression I left on someone once.  I am sure that it was not the first time.  I 'm sure many people feel the same way after they first meet me.  This is just the only time that someone actually confessed to me that they thought that.  Many times, when someone first meets myself and Raymond, he is passively sitting, well strapped into his wheelchair.  He usually is just looking around, sometimes smiling, sometimes not, and sometimes he is just drooling with a dazed look.  And when someone says “Hi” to him, he does not talk back, he usually just smiles.  Well, on this occasion, like many occasions with strangers, she started asking me questions about Raymond.  I love questions by the way, I know people are just curious and I hope to help them to understand his disability and get to know the “real” Raymond.  I proceeded to tell her about our little guy, how he may be severely disabled and medically fragile, but he loves baseball, basketball, playing with friends, watching Spongebob, going to school….etc…etc.  I am not sure exactly what I told her, but I usually talk about our very active disabled child, and I am sure Raymond was still just sitting there.  She was probably thinking….”is she talking about the same child that I am looking at?”

But once someone gets past our first meeting and gets to know Raymond, they begin to see the lively, fun-loving, giggling little boy who is so very observant and outgoing.  Yes, outgoing, can you believe that for a non-verbal child?  Our now friend also saw the “frustrated” Raymond.  She witnessed, as many have, when something is wrong, and Raymond gets frustrated, frowning, moaning, crying out, swinging his arms around and looking right into my eyes as if to scream….” Mom….I need your help!”

Do something for me as you are reading this.  Grab some tape and sit down, if you are not already sitting.  Now, close your mouth and put tape over your mouth….so you cannot talk.  Now, tape your fingers together on each hand, so that you cannot write with a pen or type on the computer.  And while you are at it, tape yourself into your chair, so that you cannot move around without someone to help you move.  Now sit there for just a minute, then try to communicate that you need something, when you cannot talk, cannot use your hands other than to swing them around, and you cannot get up to go to the item or person you need.  You cannot go and get some food, go to the bathroom, lie down, tell someone that you don’t feel well….I could go on and on.  But that is one way to describe our life with Raymond.  Those of us closest to him try our best to figure out what he needs, but he still gets frustrated and sometimes is in great pain.  Our hearts break because we don’t know what needs fixing and we can only guess and try to help him.  Can you imagine not being able to know how to help your child? 

Other times, we see the smiling, giggling, Raymond, or he is in the middle of a huge gasping laugh because I just tripped and he thinks it is funny.  He is a one smart cookie, we have always known that.  But for someone who just meets Raymond for the first time, especially in a doctor or clinic setting, they probably just think we are “off our rockers.”

I know many of you have been following this blog and our trial with the eye-gaze communication system.  There is one video that I took during the end of the trial that I have not posted until now.  I know I am not off my rocker when I say he has proven to us that he now knows how to use the device and has the potential to communicate. Watch him tell me what he needs, and I take it a step further and make him confirm with a yes or no.  We are two months out after requesting a purchase of this device, and still no answer, just waiting.