Hi, we are the Lara Family. Our younger son Raymond has Cerebral Palsy, Mitochondrial Disease (a very complex disorder), is profoundly deaf, but hearing since age 6 with a Cochlear Implant, he is feed through a tube and is very medically fragile. We hope that this blog can be a way to share the beautiful blessings from God...there is so much to say about Our Life With Raymond.
I wanted to get this recorded in “Our Life with Raymond” as this past Halloween was a complete blast.I will let the pictures do most of the talking...but Halloween is such a special time for Raymond.Seven years ago I got this crazy idea to make a costume to go around Raymond’s wheelchair, and have been doing it ever since.Why?I was asking myself that question this year, it was Sunday night, 4 days before Halloween, and I had still had not even started to work on Raymond’s costume.I was exhausted, but I grabbed two boxes from the garage and put them in the living room floor to stare at me.I just had to get it started, and then off I went.Most of you know we usually start off the morning of Halloween by going down to the local TV station, KGET to attend their Halloween Spooktacular Contest at 5am.It can get overwhelming sometimes, and the thought of skipping a year because it is too much work had come to my mind….but Raymond loves it….I couldn’t stop now.
Why?It is the one day of the year that Raymond’s disability can disappear.Any other time when we walk with Raymond into a crowd of kids, Raymond would usually be greeted with stares, whispers and many questions about his wheelchair, or “What happened to him, What’s wrong with him?”But when Raymond enters the crowd in his Halloween costumes….he gets…”Wow”, “Look at that car!” or ”Whoa….how COOL!”I love to see the smile on Raymond’s face when the kids come up to him asking questions about his various costumes, and just talking to him.You should see Raymond’s face light up.
I am so glad that I did not give into fatigue that Sunday night when I was staring at the two boxes, because this Halloween was truly amazing.Raymond won the 1st Place Prize for the costume contest at this year’s Halloween Spooktacular which was Disneyland tickets, and we can’t wait to go.This year he was a “Bakersfield Police Officer” in his very own car, and daddy put flashing blue and red lights on the car so the crowds saw Raymond coming.Then off to school where we continued to have fun, his nurse joined me dressed as an inmate, and off we went for the annual Halloween Dance at East High they hold for the Special Ed Classes in the high school district.
As I am sitting here writing this, my emotions are all over the place…great sadness, feeling crushed, anger, frustration, eagerness to fight on, huge failure, overwhelming fatigue.Many of you have kept up on our quest to get Raymond a way to communicate that uses his eyes….it is called the Tobii Eye Gaze System.It has been over a year since we requested the purchase through insurance…now two levels of appeals later, it was still denied.This fight has been one of the hardest fights of my life.After the initial 5 month trial last year in 2012 which prompted the purchase request, we had another trial with the device this past summer through the high school district, and Raymond did amazing!Even better than last year and he was able to navigate through more complex screen options using his eyes.He proved that his cognitive abilities are higher than previously accessed.But it seems that was not enough to warrant a purchase of this device by the insurance company as they suggested we use a manual eye gaze board.Please understand that what is coming from me right now is extreme frustration, because a manual eye gaze board is completely dependent on someone else presenting options to Raymond, it can only offer a few options and not always what he needs at the appropriate time of that need.That option does not give him any independence in what he “wants to say”; it does not give him a voice or the ability to get someone’s attention.Whereas the Tobii is a speech generating device that would say what he chooses….like for example, one screen that he used a lot at school this summer to greet his classmates by saying “What’s up?” or “Today is Legit!”
I don’t know what my next step will be, or where we will take this fight.And I know it seems weird that I use the word “fight”, but that seems like what this has been. It's been a total fight trying to get others to see the Raymond we know...not these physicians who come in and make an evaluation based solely on medical documentation but don’t spend time with him.He is a very complex kid…but there is a very bright kid caught inside a body that does not work well, a very bright kid who has so much love to give and continually reaches for goals that others would have given up on a long time ago, a kid who has so much drive for life….a kid who teaches us so much.
Our precious Raymond is a gift from our Lord, and I feel it in my heart that God’s will is for Raymond to one day communicate.All of my devotionals and scriptures lately have been speaking to my heart about trials and trusting our Lord.This morning I looked up Matthew 6:34 “Therefore do not worry about tomorrow, for tomorrow will worry about its own things. Sufficient for the day is its own trouble.”As I am writing this down, I am letting go of my pain and I am feeling new strength.I will keep looking into other options, whether it is for funding or devices, and I will keep praying that the Lord will open up doors for Raymond to one day be able to express himself.
It has been quite awhile since I have posted.It is this post that has rendered me frozen, I have been wanting to share this since last fall, and finally I am sitting down to write this on a cool Saturday morning as the rest of the family is still asleep.Have you ever had a moment, interaction or a song that has penetrated your heart and left you different?Last fall, after dropping Raymond off at school one morning, I had the radio tuned to Air1, a Christian station I love.As I was making a U-turn to go home, a song came on that I have heard before, but this morning, the song went straight into my heart.The words came over me….”So let my life be the proof, the proof of Your Love. Let my love look like You, and what You’re made of.How you lived, how You died…Love Is Sacrifice.”As the song was playing I was overcome with tears, but not sad tears.I was crying as a picture of our boys together came into my mind. I see God's love through Raymond's eyes all the time. But it was our son Roman that made my heart warm that morning. It was October and so we were busy with Lil Roman's football season and Raymond’s adaptive sports league. The League of Dreams was in the middle of it’s basketball season.Roman and Raymond are very close in age, but very different in abilities.But Lil’ Roman has always stepped up to help his brother play sports through the League of Dreams as his “Angel” since he was 9 years old.As the song continued and I was wiping away the tears, I was picturing Roman, hand-over-hand guiding Raymond to the basketball hoop to score, to give Raymond the chance for normalcy and to be able to play sports like other kids. And Roman has given so many Sunday afternoons for Raymond.The love between them, Roman helping Raymond, and the smile from Raymond back to Roman, that was pure love, unconditional love, that was a display of God’s love.
Love is beautiful, love is all around us, and love is to be shared.
Our days are far from perfect, we have struggles, frustrations, daily stuff that gets overwhelming, we don’t always get along. I know I often stumble and fall. But to quote the song again….”When it’s all said and done, When we sing our final song, Only love remains.”
I truly hope your day is filled with love today.I have attached a few short videos of Roman helping Raymond in the League of Dreams this past basketball and baseball season. It is now June 2013 and Raymond is playing in the first ever season of Bowling with the league, so I attached a picture of that too.But I also am including a link to the video for the song that still goes straight to my heart, it is one of my favorites…..For King and Country – The Proof Of Your Love. Sorry to overwhelm you with so many attachments, but I hope you have time to enjoy the song today also, maybe it will penetrate your heart too.
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!
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?
