SOPHIA SINGS
Here's Sophia singing a song by our good friend Todd MacDonald, who passed away on May 14. I am simply amazed by her poise and grace, singing on the fly at Philbrook Museum this afternoon. More about Todd in a minute...
ELI NEWS
We're so proud of Elijah for graduating from pre-school with flying colors. He'll attend kindergarten next year, and he'll be amazing! We're sad to say goodbye to our teachers, but such is life. Here's hoping we'll be with new teachers who are as kind, loving and understanding as those we have known at Holmes Park in Sapulpa and during our years at the Little Light House.
On the medical front, there's a bit of sad news: Our little guy has "lazy eye" (Amblyopia) in his left eye. To force the muscles in that eye to strengthen, we must put an eyepatch on his RIGHT eye, where the vision is 20/40. Insanity. To his credit, he's dealing with the discomfort to the best of his ability. Which is to say, he hates it, but he's a very good boy who suffers through all the indignities we pour on him.
Eli has a big summer ahead of him, including our Make-A-Wish trip to Hawaii in July. That's right, I said Hawaii! All four of us love beaches, pools and oceans, and it never hurts to have a luau or two thrown in for good measure. Before that, though, we will be visiting several specialists for our annual checkups, including dermatology, gastrointestrology and oncology. As long as he doesn't get jabbed with a needle, Elijah will keep a playful attitude during any doctor visit. Still, keep little Elijah in your prayers as he faces his trials and his triumphs this summer.
OUR GOOD FRIEND, TODD MACDONALD
On May 14, my friend Todd MacDonald passed away after a long struggle with mesothelioma. Long before he learned of his sickness, he touched me with the beauty of his first album, "Changes." Todd was a songwriter of breathtaking skill and tenderness, as well as a magnificent singer and amazing guitarist. When Elijah was born, it was Todd's words that brought me comfort in the face of a struggle I simply couldn't understand, the struggle between my comprehension of how the world should work and the realities of living in God's will for better or, sometimes, worse. After he got sick, Todd continued to write songs of unquestioning loyalty to "God's perfect and wise purpose," as he put it.
Todd came to Tulsa to stay at my home for a week, as he promoted his album "Pilgrims Here." All the Ramirez clan fell in love with Todd, with his gentle spirit and his razor-sharp wit. I think Todd's dearest friend during his visit was my dog, Charlie. I'm not surprised that Todd had a soft spot for animals; I suspect Adam in the garden must have communicated with nature with the same effortlessness. Most profoundly, I was awestruck by the understanding Todd showed Elijah, never mentioning any comparisons between his own plight and our son's but rather speaking and singing consistently about the love of God and the rightness of standing in his presence, no matter the cost, no matter the circumstance. Todd infected me with his evangelistic fervor, and I will try to honor him by seeking out others to love as Todd loved.
I hadn't spoken to Todd since Christmas, when we had a long talk about that trip in 2010 to Tulsa. I told him I grieved for his pain (the cancer, which had been in remission but then returned, was now resisting all chemo), and he tried his best to comfort me instead of making me console him. I tried to get a recording of Sophia singing his song "Faithful and True," to present to him as a gift, but the audio equipment was just never right. I regret not getting the video to him in time, but Todd lived without regret, and it seems somehow wrong to feel such a thing when thinking of him. Besides, I believe he can hear her singing now, and that in itself is an answer to prayer.
I've been flooding Todd's Facebook page with my final thoughts about him, and I think this post on my own blog should constitute my final post for at least a while. I just couldn't let go for the past few days, you know? Anyway, here's a link to a concert he did in the summer of 2009 to promote "Pilgrims Here." He was amazing, in every regard.
Tuesday, May 22, 2012
Wednesday, April 25, 2012
Eli Who?
Eli and I were watching Dora together. We pretended that he was Boots and I was Dora. So, we had some various things that were our stars to catch. We put them in my pretend pocket. I said "Estrellas" and Eli says, "those aren't estrellas, those are stars." I cracked up and realized that I should not count on Dora to teach Elijah RAMIREZ Spanish.
Please pray for Eli. He has pneumonia! It's a scary diagnosis, in my mom-opinion.
Love you all.
Melissa
Please pray for Eli. He has pneumonia! It's a scary diagnosis, in my mom-opinion.
Love you all.
Melissa
Sunday, April 1, 2012
Thursday, March 15, 2012
How's Eli?
I thought it would be nice to give everyone a recap on how the boy is doing and who he's been doing it with. For those of you who have friended me on Facebook, you've seen some of this already, including several wonderful pictures of Eli and his big sister Sophia, living life and taking charge. Overall, things are going very well, and Eli is doing better than ever. But we still face some big challenges, so continue to keep us in your prayers.
The most recent news is also the most pressing: Elijah had a temperature of 104 a couple of days ago, as well as a painful ear infection and some serious fatigue. He's doing much better since the antibiotics got into his system, and he's back at school today. This is last day before fall break begins tomorrow, and we have big plans for him day-to-day in and around Tulsa, so pray that he stay healthy so he can have fun!
Elijah is edging toward 28 pounds, which is phenomenal. The main reason he hasn't been able to push past the 27 lb. mark is that he is burning so many calories every day. How is he doing that, you ask? Why, by playing longer and working harder than ever before! He now spends his entire day at Holmes Park Elementary School in Sapulpa, and he uses his prosthetic legs and walker ALL DAY LONG, to move from classroom to classroom, to play on the playground at recess, even to play kickball and freeze tag in the gym. I'm told he likes to run around the bases. Can you imagine? It's a testament to the grace of God in our lives that he is doing so well and having so much fun. He's learning his numbers and his letters, and all the kids at school treat him like a superhero.
He is now wearing his BAHA hearing aid around-the-clock, and it really seems to make a difference. Since it's been a while, I'll recap all the hearing issues he faces. First of all, he was born with a radically underdeveloped inner ear structure (laterally; both sides, both ears), resulting in shortened cochleas and too few cilia (hairs) inside. Also, his Eustachian tubes do not drain properly, which means the fluid behind his eardrum doesn't pour into his throat like it does for you and me, but rather stays packed in back there. This makes it hard to hear, but it also allows the nasty bacteria to stick around much longer than normal, causing ear infections all the time. The tubes in his ears are functioning well, but there's only so much they can accomplish. Fortunately, his brain is hearing just fine. That is to say: the physical hearing structure (the ear) doesn't do all it should, but the part of his brain that interprets sound works perfectly, if the sound can just get to it. And so, the BAHA presses against his forehead with the help of a headband, and turns his entire skull into a big speaker. Pretty cool! When he's older, we'll surgically insert an anchor for the BAHA, removing the need for the headband, but for now his skull isn't thick enough for the surgery. The headband is bright red, and I think he looks a little like John Rambo when he wears it, which kicks butt.
His current obsession is trains, and he has almost completed his empire of wooden Thomas and Friends railway toys. He also collects Chuggingtons and wooden Cars 2 toys, and he can tell you the difference between a steamie, a diesel, an electric, a bullet train and a mag-lev. I thoroughly enjoy sitting on the floor and playing trains with him, but it's almost as much fun watching him play alone, having the engines talk to one another about the cars they're pulling and where they are headed to next.
Melissa and I appreciate each and every one of you for sending prayers out on Elijah's behalf, indeed on behalf of all four of us. They are much needed, especially for whatever comes next. Pray that we provide Eli with the best walking process possible, which is currently the walker but might be crutches or even unassisted walking in the weeks and months to come. Pray that he stay healthy enough to enjoy this beautiful Oklahoma weather we're having. Feel free to drop us a line anytime.
David
The most recent news is also the most pressing: Elijah had a temperature of 104 a couple of days ago, as well as a painful ear infection and some serious fatigue. He's doing much better since the antibiotics got into his system, and he's back at school today. This is last day before fall break begins tomorrow, and we have big plans for him day-to-day in and around Tulsa, so pray that he stay healthy so he can have fun!
Elijah is edging toward 28 pounds, which is phenomenal. The main reason he hasn't been able to push past the 27 lb. mark is that he is burning so many calories every day. How is he doing that, you ask? Why, by playing longer and working harder than ever before! He now spends his entire day at Holmes Park Elementary School in Sapulpa, and he uses his prosthetic legs and walker ALL DAY LONG, to move from classroom to classroom, to play on the playground at recess, even to play kickball and freeze tag in the gym. I'm told he likes to run around the bases. Can you imagine? It's a testament to the grace of God in our lives that he is doing so well and having so much fun. He's learning his numbers and his letters, and all the kids at school treat him like a superhero.
He is now wearing his BAHA hearing aid around-the-clock, and it really seems to make a difference. Since it's been a while, I'll recap all the hearing issues he faces. First of all, he was born with a radically underdeveloped inner ear structure (laterally; both sides, both ears), resulting in shortened cochleas and too few cilia (hairs) inside. Also, his Eustachian tubes do not drain properly, which means the fluid behind his eardrum doesn't pour into his throat like it does for you and me, but rather stays packed in back there. This makes it hard to hear, but it also allows the nasty bacteria to stick around much longer than normal, causing ear infections all the time. The tubes in his ears are functioning well, but there's only so much they can accomplish. Fortunately, his brain is hearing just fine. That is to say: the physical hearing structure (the ear) doesn't do all it should, but the part of his brain that interprets sound works perfectly, if the sound can just get to it. And so, the BAHA presses against his forehead with the help of a headband, and turns his entire skull into a big speaker. Pretty cool! When he's older, we'll surgically insert an anchor for the BAHA, removing the need for the headband, but for now his skull isn't thick enough for the surgery. The headband is bright red, and I think he looks a little like John Rambo when he wears it, which kicks butt.
His current obsession is trains, and he has almost completed his empire of wooden Thomas and Friends railway toys. He also collects Chuggingtons and wooden Cars 2 toys, and he can tell you the difference between a steamie, a diesel, an electric, a bullet train and a mag-lev. I thoroughly enjoy sitting on the floor and playing trains with him, but it's almost as much fun watching him play alone, having the engines talk to one another about the cars they're pulling and where they are headed to next.
Melissa and I appreciate each and every one of you for sending prayers out on Elijah's behalf, indeed on behalf of all four of us. They are much needed, especially for whatever comes next. Pray that we provide Eli with the best walking process possible, which is currently the walker but might be crutches or even unassisted walking in the weeks and months to come. Pray that he stay healthy enough to enjoy this beautiful Oklahoma weather we're having. Feel free to drop us a line anytime.
David
Thursday, March 1, 2012
The film about Sophia Ramirez
Follow this link to read the article about the young man who made a movie about Sophia Ramirez. You may watch the movie about halfway down the article. Enjoy!
The Glass Child
Melissa
The Glass Child
Melissa
Tuesday, January 17, 2012
Enjoy a Laugh
This evening I had to take Elijah's latest prescription to a new pharmacy because our "usual" was out of the drug we needed. The cashier putting the prescription in their system and setting Eli up as a new patient asked me "is he allergic to any drugs or have any medical concerns?" I looked at her and thought for a moment. Do I dive into my son's medical concerns? I replied "no" with a smile like I was really getting away with something. It has had me giggling all night.
I also picked up some hearing aid batteries. For those of you who are long time Eli Journey Members, you know that when he was teeny tiny, he had a bone conduction hearing aid. That's the type that just sits on your head with a strap. It literally sounds like a microphone in your head (I've tried it). David thought we should try it again because of how often Eli says a very genuine "what?" in our conversations. I put a new battery in the five year old device and it came to life (thank you Lord). I placed it on Elijah's head and started talking to him in a subdued voice and the child smiled from EAR TO EAR. He asked if he could keep it on and if he could take it to school. Maybe David is on to something. We'll see.
A dear friend of mine, at the young age of 55, died last week after finding out she had cancer only days before. I will miss her posts on this blog and her encouraging phone calls to me. mhh you will be missed.
Love you all,
Melissa
P.S. Aren't David's videos amazing. I watch them over and over so impressed with his abilities. :)
I also picked up some hearing aid batteries. For those of you who are long time Eli Journey Members, you know that when he was teeny tiny, he had a bone conduction hearing aid. That's the type that just sits on your head with a strap. It literally sounds like a microphone in your head (I've tried it). David thought we should try it again because of how often Eli says a very genuine "what?" in our conversations. I put a new battery in the five year old device and it came to life (thank you Lord). I placed it on Elijah's head and started talking to him in a subdued voice and the child smiled from EAR TO EAR. He asked if he could keep it on and if he could take it to school. Maybe David is on to something. We'll see.
A dear friend of mine, at the young age of 55, died last week after finding out she had cancer only days before. I will miss her posts on this blog and her encouraging phone calls to me. mhh you will be missed.
Love you all,
Melissa
P.S. Aren't David's videos amazing. I watch them over and over so impressed with his abilities. :)
Sunday, January 15, 2012
Saturday, January 14, 2012
Videos From Disney World (part 2)
The continuing saga of our Christmas/Birthday trip to Florida in Dec. 2011:
Part 3 of the Disney Trilogy to follow!
Part 3 of the Disney Trilogy to follow!
Monday, January 2, 2012
Eli's BIG Birthday Party
If you read this blog, we invited you to join us in celebration of Elijah's 5th birthday. The party was Saturday and more than 80 of you joined us to wish Eli the most special birthday wishes ever. Thank you to those of you who took your time to attend...it means a lot to us. To those of you who couldn't make it, we know you were here in spirit and heart.
I rarely think about the night Eli was born. That night and the days that followed are not pleasant memories for me. In fact, I cannot think of much during that time to make me smile. Yes, I was introduced in a profound way to the kindness of friends, family and strangers, but the uncertainty around Elijah overshadowed everything during that time.
I wanted to celebrate Eli's fifth birthday to overshadow the holiday of 2006. For now on, I'm going to remember the look on Eli's face as 80 people sang a hearty Happy Birthday to him. He loved every minute of it.
One of Eli's gifts, a new Clifford
Eli ready to open presents!
Eli and Grammie Ayers
Blowing out candle (with a little help)
Basking in the song
Eli and Ms. Brooke from the Little Light House
Did you notice in these photos how Sophia is always right at Eli's side making sure he has what he needs. She is his biggest fan and the best big sister anyone ever could have.
Thank you everyone!
Melissa
P.S. Eli starts full-time public school tomorrow at Holmes Park. Pray for him as he makes this transition from the safe place that is the Little Light House to a little more unknown situation. He is ready. Holmes Park is ready. Am I ready? :)
I rarely think about the night Eli was born. That night and the days that followed are not pleasant memories for me. In fact, I cannot think of much during that time to make me smile. Yes, I was introduced in a profound way to the kindness of friends, family and strangers, but the uncertainty around Elijah overshadowed everything during that time.
I wanted to celebrate Eli's fifth birthday to overshadow the holiday of 2006. For now on, I'm going to remember the look on Eli's face as 80 people sang a hearty Happy Birthday to him. He loved every minute of it.
One of Eli's gifts, a new Clifford
Eli ready to open presents!
Eli and Grammie Ayers
Blowing out candle (with a little help)
Basking in the song
Eli and Ms. Brooke from the Little Light House
Did you notice in these photos how Sophia is always right at Eli's side making sure he has what he needs. She is his biggest fan and the best big sister anyone ever could have.
Thank you everyone!
Melissa
P.S. Eli starts full-time public school tomorrow at Holmes Park. Pray for him as he makes this transition from the safe place that is the Little Light House to a little more unknown situation. He is ready. Holmes Park is ready. Am I ready? :)
Friday, December 23, 2011
Random Disney World memories
We’re back! Did you miss us? Only crazy people would take their kids to Walt Disney World for eight days right before Christmas, and you already think we’re plenty crazy, so we didn’t make a lot of noise about it. But Sophia and Elijah were just so stinking cute this week, I just had to tell you some of the amazing things they did and experienced. Pics and Videos to follow!
CHRISTMAS TIME AT DISNEY WORLD
Obviously, the main reason we went this week was to experience Christmas (they call it Christmas, NOT “Holidays”) at Disney World, and it was totally worth it. Snow on Main Street, huge Christmas trees in every park and resort, character meetings with holiday costumes, free cocoa and snickerdoodles during a party at the Magic Kingdom, and lights lights lights lights lights LIGHTS! We saw several versions of Santa at EPCOT, including Pere Noel (France), Kris Kringle (Norway) and Father Christmas (United Kingdom).Best of all, it was fantastic visiting South Florida when the weather was closer to 70 than 90. Melissa made fun of me for taking so many sweatshirts and jackets, but she used hers often enough when we walked the parks at nighttime. So there!
ELI ON THE MOVE
The decision to take Elijah’s walker was not a tough one, but carrying it to Florida turned out to be a chore. Once we got to the parks, it was so HOT that we left Elijah’s shoes at the room; the first and only night he wore them, he sweated too much. But at the airports, with the long layovers, Elijah really shone like the star he is. From the first few minutes at Tulsa International, all eyes were on Eli as he darted in and out of crowds in his walker, giggling and talking and making threats to go faster. On they way home, he was so excited to stroll down the runway to the plane that he stood staring at the door for twenty minutes, full of nervous energy, grinning from ear to ear. That’s exactly the attitude we always wanted from him when we asked him to walk in his shoes.
BIG SISTER TO THE RESCUE
There are so many little moments day-to-day where Elijah needs a big person helping him with more delicate tasks, and his sister Sophia was invaluable this trip for that purpose. On the plane, she held up the DVD player so they could both watch “Mickey Mouse Clubhouse,” and she handed him pretzels and sippy cups. When they met the characters, she would carry him to them, set him down so they could meet him, then step back and let him have his moment. She did that so many times! Sophia pushed the stroller, carried the backpack, held places in lines while we changed diapers... basically, she did it all, and she did it smiling. She is an ESSENTIAL part of Team Eli.
“HANDICAPPED”
Doesn’t the word just make you cringe? But there’s no getting around this singular, well-known term for “first in line.” The boy got special passes everywhere we went, so that he could sit closer during shows, move to the front of long lines, and get on buses early. So if you wanted to know where you could get “special needs assistance” or whatever they called it over the loudspeakers, and you were in a hurry, you just found a cast member and asked, “Where’s the handicapped section?” Either that or look for the ubiquitous image of the Stick Figure Sitting On A Circle.
The first time we moved to the front of the airplane boarding queue, the old feelings of guilt returned. “Are we using Elijah to receive special treatment we wouldn’t otherwise get?” But no, it’s not that at all. It really DOES take longer to get set up on the plane with Eli. It really DOES take longer to get from ride to ride, and to feed him and change him. It really DOES hurt the back to carry Eli while you stand in a line which requires transfer from the stroller. So yeah, those feelings of guilt were fleeting and forgotten. And we really did have great seats for everything we saw, and we made great time moving from one ride to the next. I don’t know how we could have done any of this without “handicapped” considerations. But that word... yuck.
EVERYBODY LOVES ELIJAH
Who do you think felt luckier when Elijah met Mickey? Was it the boy or the mouse? Because to see it from a few feet away, you’d think Mickey had been waiting all day just to see our big boy. Some of the kids are shy or scared when they meet the big animals in their colorful costumes, but Elijah was absolutely fearless all week long. He grabbed Donald’s bill, he kissed Timon’s nose, he GOT kisses from Cinderella and her sisters and most of the other princesses, and when it came time to ham it up, OH BOY did he deliver.
Within the first few minutes of arriving at the Magic Kingdom, one of the cast members recognized Elijah from our visit this summer. He called me over and invited me to get first in line to meet Pluto. The line was really long, and I was a little nervous about “cutting.” But here’s a phenomenon I encountered again and again throughout our trip: Not only didn’t the other families mind when Elijah jumped to the front, they all smiled and laughed (and sometimes cried) to see how much fun he was having, and if the characters devoted a little extra time to the boy, they were happy to let him. After we finished with Pluto, Elijah turned to the crowd he had just cut in front of and waved and smiled. They all said “Goodbye!” and waved back, some yelling “Happy Birthday!” when they saw the button on his shirt.
LATE TO BED, EARLY TO RISE
Melissa worked harder than any of us this trip, just like she does during the week when we’re at home. There’s a lot of walking, and standing, and transporting, and waiting, and if someone in the group needs a little extra rest, well, it’s easy to forgive. So when we realized that Elijah wasn’t going to be able to keep up with “The Ramirez WDW Pace” that we’ve set for our trips, it was agreed that Melissa would also catch some Z’s and allow the boy to recover in the hotel room.
Nevertheless, Sophia had her mind set on riding as many rides as possible, and truth be told, so did I. And thus, it was daddy and daughter who closed the parks at least twice, one time staying in the Magic Kingdom until TWO IN THE MORNING to ride Splash Mountain and Thunder Mountain and various other mountains as many times as possible. We got up early to see Animal Kingdom, and we went swimming in the resort pools twice while mom and son caught up on their beauty sleep. Best of all, it was just the two of us for a special lunch in EPCOT with five of the princesses. I already told you how generous Sophia was when it came time for Eli to meet the characters, but it was wonderful so see them fawning just over her, listening to her stories and posing for princess pictures. She was beautiful and charming all week.
And for the record, Sophia was so brave this trip! She found her inner daredevil on the Test Track and the Thunder Mountain Railroad, and she was even game for Space Mountain one time. Which was more than enough for me. They made that ride faster than it was, I swear.
OLD ENOUGH TO LOVE IT
That big boy Eli found so many ways to enjoy this trip that it will be hard to list them all, but here are a few.
-- FIREWORKS: That boy is a born pyro. (And a gearhead to boot; I plan on him changing my oil when he grows up.) The first fireworks show at EPCOT includes monster-sized flame-throwers out on the middle of the lake, as well as big torches let up at the perimeter of the water, and Elijah kept shouting, “Oh my gosh! Oh my gosh! I cannot believe it! Oh my gosh!” Then when it was over, he asked if we’d see more fireworks later, and he was just as excited the next time. We paid a little extra to sit in the Tomorrowland Terrace and watch Tinker Bell zip-line from the top of the castle to RIGHT OVER OUR HEADS, followed by the clearest, loudest fireworks of the entire trip. I hope Elijah hasn’t found a new hobby...
-- THE TRAINS: Those of you who’ve met Eli know he has a true appreciation for cars and trains, and that makes Disney World one of his favorite places. First there’s the big steam train at Magic Kingdom, and he probably spent more time on that than any other ride, which is a good way to rest mom and dad’s sore feet for a few minutes. The Monorail was another favorite, and he pointed and squealed every time he saw it coming. In addition, Christmas Time is when they bring out a bunch of gingerbread villages with trains moving through them, and every time we encountered one, Elijah would sit and stare for hours. But nothing could compare to the miniature village outside of Germany in the EPCOT World Showcase. He sat on the concrete and stared at the trains moving for about half-an-hour. At one point he looked up at me and said, “Dad, the trains love me.”
-- PARADES: In case you hadn’t picked up on it, Elijah is a magnet for attention. We know people sometimes stare because they can’t help it, but for the most part they have good intentions, and the kind words of love and support are genuine. There are times you wish people would just find something else to look at, but the big parades they hold at the parks are not those times. All the dancers and characters made a special point to come see Elijah when they saw him on the sidelines, and they would hug him and say Happy Birthday. Only a five-year-old could experience so much attention so fast and not be utterly exhausted, but there he was, grinning from ear to ear, spinning and laughing and saying how great the parade was. And he’s right. It was great!!!
SEE YOU REAL SOON
And now we’re home! Elijah went to sleep yesterday at 3:30 p.m., and he's still out, making it a 20-hour nap. Then it's time for more gifts, more food, and more travel. Pray for Elijah’s general ear-nose-throat health this holiday season, and don’t forget to visit him on Dec. 31st for his Birthday Celebration. E-mail me at davidramirez01@yahoo.com for more details on that. Merry Christmas!
CHRISTMAS TIME AT DISNEY WORLD
Obviously, the main reason we went this week was to experience Christmas (they call it Christmas, NOT “Holidays”) at Disney World, and it was totally worth it. Snow on Main Street, huge Christmas trees in every park and resort, character meetings with holiday costumes, free cocoa and snickerdoodles during a party at the Magic Kingdom, and lights lights lights lights lights LIGHTS! We saw several versions of Santa at EPCOT, including Pere Noel (France), Kris Kringle (Norway) and Father Christmas (United Kingdom).Best of all, it was fantastic visiting South Florida when the weather was closer to 70 than 90. Melissa made fun of me for taking so many sweatshirts and jackets, but she used hers often enough when we walked the parks at nighttime. So there!
ELI ON THE MOVE
The decision to take Elijah’s walker was not a tough one, but carrying it to Florida turned out to be a chore. Once we got to the parks, it was so HOT that we left Elijah’s shoes at the room; the first and only night he wore them, he sweated too much. But at the airports, with the long layovers, Elijah really shone like the star he is. From the first few minutes at Tulsa International, all eyes were on Eli as he darted in and out of crowds in his walker, giggling and talking and making threats to go faster. On they way home, he was so excited to stroll down the runway to the plane that he stood staring at the door for twenty minutes, full of nervous energy, grinning from ear to ear. That’s exactly the attitude we always wanted from him when we asked him to walk in his shoes.
BIG SISTER TO THE RESCUE
There are so many little moments day-to-day where Elijah needs a big person helping him with more delicate tasks, and his sister Sophia was invaluable this trip for that purpose. On the plane, she held up the DVD player so they could both watch “Mickey Mouse Clubhouse,” and she handed him pretzels and sippy cups. When they met the characters, she would carry him to them, set him down so they could meet him, then step back and let him have his moment. She did that so many times! Sophia pushed the stroller, carried the backpack, held places in lines while we changed diapers... basically, she did it all, and she did it smiling. She is an ESSENTIAL part of Team Eli.
“HANDICAPPED”
Doesn’t the word just make you cringe? But there’s no getting around this singular, well-known term for “first in line.” The boy got special passes everywhere we went, so that he could sit closer during shows, move to the front of long lines, and get on buses early. So if you wanted to know where you could get “special needs assistance” or whatever they called it over the loudspeakers, and you were in a hurry, you just found a cast member and asked, “Where’s the handicapped section?” Either that or look for the ubiquitous image of the Stick Figure Sitting On A Circle.
The first time we moved to the front of the airplane boarding queue, the old feelings of guilt returned. “Are we using Elijah to receive special treatment we wouldn’t otherwise get?” But no, it’s not that at all. It really DOES take longer to get set up on the plane with Eli. It really DOES take longer to get from ride to ride, and to feed him and change him. It really DOES hurt the back to carry Eli while you stand in a line which requires transfer from the stroller. So yeah, those feelings of guilt were fleeting and forgotten. And we really did have great seats for everything we saw, and we made great time moving from one ride to the next. I don’t know how we could have done any of this without “handicapped” considerations. But that word... yuck.
EVERYBODY LOVES ELIJAH
Who do you think felt luckier when Elijah met Mickey? Was it the boy or the mouse? Because to see it from a few feet away, you’d think Mickey had been waiting all day just to see our big boy. Some of the kids are shy or scared when they meet the big animals in their colorful costumes, but Elijah was absolutely fearless all week long. He grabbed Donald’s bill, he kissed Timon’s nose, he GOT kisses from Cinderella and her sisters and most of the other princesses, and when it came time to ham it up, OH BOY did he deliver.
Within the first few minutes of arriving at the Magic Kingdom, one of the cast members recognized Elijah from our visit this summer. He called me over and invited me to get first in line to meet Pluto. The line was really long, and I was a little nervous about “cutting.” But here’s a phenomenon I encountered again and again throughout our trip: Not only didn’t the other families mind when Elijah jumped to the front, they all smiled and laughed (and sometimes cried) to see how much fun he was having, and if the characters devoted a little extra time to the boy, they were happy to let him. After we finished with Pluto, Elijah turned to the crowd he had just cut in front of and waved and smiled. They all said “Goodbye!” and waved back, some yelling “Happy Birthday!” when they saw the button on his shirt.
LATE TO BED, EARLY TO RISE
Melissa worked harder than any of us this trip, just like she does during the week when we’re at home. There’s a lot of walking, and standing, and transporting, and waiting, and if someone in the group needs a little extra rest, well, it’s easy to forgive. So when we realized that Elijah wasn’t going to be able to keep up with “The Ramirez WDW Pace” that we’ve set for our trips, it was agreed that Melissa would also catch some Z’s and allow the boy to recover in the hotel room.
Nevertheless, Sophia had her mind set on riding as many rides as possible, and truth be told, so did I. And thus, it was daddy and daughter who closed the parks at least twice, one time staying in the Magic Kingdom until TWO IN THE MORNING to ride Splash Mountain and Thunder Mountain and various other mountains as many times as possible. We got up early to see Animal Kingdom, and we went swimming in the resort pools twice while mom and son caught up on their beauty sleep. Best of all, it was just the two of us for a special lunch in EPCOT with five of the princesses. I already told you how generous Sophia was when it came time for Eli to meet the characters, but it was wonderful so see them fawning just over her, listening to her stories and posing for princess pictures. She was beautiful and charming all week.
And for the record, Sophia was so brave this trip! She found her inner daredevil on the Test Track and the Thunder Mountain Railroad, and she was even game for Space Mountain one time. Which was more than enough for me. They made that ride faster than it was, I swear.
OLD ENOUGH TO LOVE IT
That big boy Eli found so many ways to enjoy this trip that it will be hard to list them all, but here are a few.
-- FIREWORKS: That boy is a born pyro. (And a gearhead to boot; I plan on him changing my oil when he grows up.) The first fireworks show at EPCOT includes monster-sized flame-throwers out on the middle of the lake, as well as big torches let up at the perimeter of the water, and Elijah kept shouting, “Oh my gosh! Oh my gosh! I cannot believe it! Oh my gosh!” Then when it was over, he asked if we’d see more fireworks later, and he was just as excited the next time. We paid a little extra to sit in the Tomorrowland Terrace and watch Tinker Bell zip-line from the top of the castle to RIGHT OVER OUR HEADS, followed by the clearest, loudest fireworks of the entire trip. I hope Elijah hasn’t found a new hobby...
-- THE TRAINS: Those of you who’ve met Eli know he has a true appreciation for cars and trains, and that makes Disney World one of his favorite places. First there’s the big steam train at Magic Kingdom, and he probably spent more time on that than any other ride, which is a good way to rest mom and dad’s sore feet for a few minutes. The Monorail was another favorite, and he pointed and squealed every time he saw it coming. In addition, Christmas Time is when they bring out a bunch of gingerbread villages with trains moving through them, and every time we encountered one, Elijah would sit and stare for hours. But nothing could compare to the miniature village outside of Germany in the EPCOT World Showcase. He sat on the concrete and stared at the trains moving for about half-an-hour. At one point he looked up at me and said, “Dad, the trains love me.”
-- PARADES: In case you hadn’t picked up on it, Elijah is a magnet for attention. We know people sometimes stare because they can’t help it, but for the most part they have good intentions, and the kind words of love and support are genuine. There are times you wish people would just find something else to look at, but the big parades they hold at the parks are not those times. All the dancers and characters made a special point to come see Elijah when they saw him on the sidelines, and they would hug him and say Happy Birthday. Only a five-year-old could experience so much attention so fast and not be utterly exhausted, but there he was, grinning from ear to ear, spinning and laughing and saying how great the parade was. And he’s right. It was great!!!
SEE YOU REAL SOON
And now we’re home! Elijah went to sleep yesterday at 3:30 p.m., and he's still out, making it a 20-hour nap. Then it's time for more gifts, more food, and more travel. Pray for Elijah’s general ear-nose-throat health this holiday season, and don’t forget to visit him on Dec. 31st for his Birthday Celebration. E-mail me at davidramirez01@yahoo.com for more details on that. Merry Christmas!
Friday, November 25, 2011
Eli is almost FIVE!
Eli will be five years old on December 23. We've decided these five years deserve a BIG celebration. We're having a Birthday Party for Eli on Dec. 31 and we're inviting everyone who has been in Eli's life since his birth. It's been a wild ride.
So, since you read his blog, you are a member of his team and we want to invite you. If you haven't received an invitation it is only because I don't have your address. So send me an e-mail melramirez22@yahoo.com with your addy and expect your invite soon.
Melissa
So, since you read his blog, you are a member of his team and we want to invite you. If you haven't received an invitation it is only because I don't have your address. So send me an e-mail melramirez22@yahoo.com with your addy and expect your invite soon.
Melissa
Thursday, November 17, 2011
Eli on KRMG... Prepare For The Cute
Elijah was at LaFortune Park this afternoon to talk on-air with Joe Kelly from KRMG AM740. Joe and the staff of Make-A-Wish were in their second day of collecting donations for the annual fundraiser, and I'm pretty sure they made their goal of $200,000. That doesn't mean it's too late for you to donate! They've decided to send Eli to Hawaii sometime in 2012. (Hopefully they'll decide we can go with him; I'll keep you posted.)
Eli got to look inside a police patrol car, and he talked with several officers, then went right up to a real helicopter and poked his head inside! Then it was time to talk on the radio, and Eli turned on the charm big time. Jeff Summers, CEO of Make-A-Wish Oklahoma, has given Eli the nickname "Hollywood."
We also recorded a "Story Of Light" which has been running on KRMG all this week. We didn't know it at the time we recorded it, but it was actually HILARIOUS. Take a listen by clicking on this link, then scrolling down to the list of names and clicking on Eli's:
http://www.krmg.com/maw/index/
Eli got to look inside a police patrol car, and he talked with several officers, then went right up to a real helicopter and poked his head inside! Then it was time to talk on the radio, and Eli turned on the charm big time. Jeff Summers, CEO of Make-A-Wish Oklahoma, has given Eli the nickname "Hollywood."
We also recorded a "Story Of Light" which has been running on KRMG all this week. We didn't know it at the time we recorded it, but it was actually HILARIOUS. Take a listen by clicking on this link, then scrolling down to the list of names and clicking on Eli's:
http://www.krmg.com/maw/index/
We have another ear tube surgery on Monday. No big thing, right? But he'll be under general anaesthetic, and he only weighs 26 pounds, so it makes me nervous. Pray for Eli!
Saturday, October 1, 2011
Elijah at Mini-Laps - THE PHANTOM
It's that time of year again, and all our friends and family made this the most special Mini-Laps event so far. We met and exceeded our fund-raising goal, and the Little Light House raised the largest amount in school history for this event. Every year, the students of TLLH dress up in costumes and walk around a small track behind the school, as hundreds cheer them on and hear their stories. This year's theme was "The Big Apple," and we dressed Elijah up as The Phantom Of The Opera, one of the classic Broadway icons. We turned his walker into a pipe organ, and he really hammed it up.
Watch as he takes his lap for the first time on his own two legs! This accomplishment is the culmination of years of work on the part of Eli's parents (that's me), his teachers and therapists both at school and at home, and most of all Elijah himself. His first year, you may recall, he was pulled around the track in a toy car made up to look like Lightning McQueen, and at the end he scooted over the finish line on his bottom. The next year, he went around in a wagon with some farm animals attached, then he actually walked about ten steps over the line in his walker. This took place ONE DAY after returning from the Shriners Hospital in Shreveport where he received his very first pair of prosthetic legs. There were tears that year, but he made it through with flying colors.
No tears in 2011, just willpower and an adoring crowd. You'll see him take a tumble before he makes the turn, but it's no surprise that he stood up again and kept going, eventually walking the entire track on his own. He loved seeing his mom and sister waiting for him, and he's looking forward to seeing YOU there next year!
BONUS VIDEO: The day before the event, we got a call from Linda, the PT at Eli's school, suggesting we make sure he could navigate in his blue Kid Walk, which he uses all the time at our house but never before at school. This was also my only chance to see him walk his lap, since I went to Boston on Saturday and had to miss the actual event (FROWN). I took Elijah and his nurse Melody to the school, and although he got tired a few times, he never gave up.
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