Thursday, October 30, 2008
It has been a while since I've been able to post. Life just seems to keep me hopping most of the time. This evening, I have a brief window of time at home alone. Happens so rarely that I hardly know what to do with it. I suppose I'm busy waiting for the family to return.
Today has been one of those days in life that I'd rather delete. Eli is fine. Sophia is fine. David is fine.
My dad tells me about the guy who felt sorry for himself because he didn't have any shoes until he met the guy who didn't have any feet. Well, I have to say that I stopped judging my pain against the pain and agony and trials of my fellow man a few months after Eli joined our family and I regained my mental stability. Well, perhaps it was more than a few months...but that's where I am now. I know that some of us have to bear larger loads than our fair share. Some of us are bearing enough for seven or eight lifetimes all hurled on top at once. From there, we just have to learn to put one foot in front of the other foot every day and pray that the load has reached its maximum, but not its tilting point. It isn't easy. In fact, it is really hard.
David and I endured a lot of bad news today as we felt pain along with our dear family members. None of today's news was about Eli.
Today, my dear cousin Stacie received devastating news about her healthy kid Garrett. Gavin continues to fight brain cancer and now the load on her and Jeff and the rest of their family has been quadrupled. There is nothing about this that is fair. No one can understand why. It is really horrible.
I know you will join me in praying for their lives. Pray for Gavin and Garrett and their health. Pray that today's diagnosis was WAY off for Garrett. Pray for Jeff and Stacie as they face even more unbelievable challenges as a couple and parents.
My grandmother will spend tonight in the hospital to have some tests run tomorrow on her heart to rule out any problems. She was experiencing shortness of breath and chest tightness today. David's grandfather will have a pace maker installed tomorrow in OKC. Please pray for both of them. They both mean a great, great deal to David and me.
Elijah saw a new ear, nose and throat doctor yesterday. The tubes in his ears are not functioning. They are on their way to falling out and are far enough in the process that they are not working at all. This means that Elijah is missing all low-frequency tones in his hearing, which will further delay his speech. The new ENT says he needs to see Eli in another 2 months and then decide if he needs new tubes and what to do about his pesky adenoids, which are likely culprits in Eli's non-stop runny nose. To complicate things, Eli's former cleft palate makes adenoid removal risky and far more difficult. Please pray that we can come to a solution for his ear, nose and throat situation. I cannot remember a day that Eli didn't have snot running. He is fed up with having his nose suctioned, wiped or touched and I don't blame him. Then, David tells me he had a friend growing up whose nose was malformed from being wiped too much. WHAT! So, now the snot should just run into his mouth? We need win-wins not lose-lose.
Please remember sweet Gavin and Garrett in your prayers tonight and be thankful for the good things in your life.
Love to all,
Friday, October 24, 2008
Elijah looks great. He's playing, babbling, sitting-up, and loaning me cash.
Monday, October 20, 2008
Saturday, October 11, 2008
We visited the monthly meeting of the Tulsa chapter of the Shriners. The building says "Akdar Temple," but I don't know if that makes them an "Akdar Chapter" or "Branch" or "Subdivision." I had enough trouble remembering what Webelos meant when I was in Cub Scouts. They've asked me to join, and although I think they were sort of kidding, I might just have to do it, if only to figure out why they carry those excellent fez hats around in plastic cases. I used something similar to haul my trombone around in high school, but the hats look more expensive. I've got to have one.
They meet in the fellowship hall of their building and eat, followed by a stage presentation where they go over monthly minutes and schedules. Melissa and I set up a PowerPoint presentation with 37 pictures of Elijah from over the past 21 months. It's alarming to see how small he was, literally gaunt, frail arms with no muscles, and he hardly ever smiled even when he was laughing. The pictures went in order from oldest to newest, and it's heartwarming to see how he's grown and improved. By the way, he weighs 15.94 pounds today!!! He's magnificent.
First the Shriners fed us, and I was leery at first of the pepper steak -- it's always iffy eating someone else's homemade recipe -- but I was stunned by how good it was. Mel keeps making fun of me for the yummy sounds I made. But it was great! Although I don't want you to get the impression that Melissa doesn't feed me. Because she does. Constantly.
After the meal, they invited Melissa up to tell the crowd about the impact the Shriners have had on our precious son. Without using notes (she's such a professional), Melissa started at the start, talking about how scared we were the night he was born. She talked about how a couple of doctors in Oklahoma, who seemed to know what they were talking about, turned out to be wrong and only the Shriners in Chicago and Shreveport had the expertise to figure out Elijah's entire story. At one point she told the story about how we went to Chicago to have Eli's cleft palate examined, and they told us, "But first we'll need to do something about his head." She put a bit of a comedic spin on the story, because there really is an element of slapstick to the whole thing, since there's always a new surprise and if you don't laugh you'll cry. I did laugh, like I was supposed to, and so did Melissa's friend Nellie Kelly who sat at our table. Nellie used to be the medical reporter for the Tulsa World, and she and the Shriners go way back. I believe she made the first call to them so they'd get Elijah's paperwork underway. So anyway, Nellie and I are snickering at the story, but no one else in the room is. It wasn't really until after Melissa was done that we remembered how horrifying it was to face some of that news the first time, especially about the fused sutures in the skull. So no laughter, but there were tons of smiles, and this is why. Melissa would describe something we recently had done to Elijah's wrist, and there he was sitting on the first table in the room with me playing peek-a-boo with him with a paper napkin (that was so cute). And everyone is watching Elijah play with his hands even as Melissa is describing them, and you could feel the outpouring of affection they had for him. He gets that a lot.
Here's the gist of Melissa's presentation: If it weren't for the Shriners Hospitals, we don't know where Elijah would be today. They have the experts, they have the facilities, they have a nursing staff that treats Elijah like a little boy and not a frightening puzzle, and when they send us a letter in the mail, we know for certain that it's not a bill. They are superheroes.
After the speech, about 40 people gathered around to say hello to Elijah. They wanted to see him laugh and clap and interact, and he didn't disappoint. A couple of Shriner big-wigs asked Melissa if she'd be willing to give her speech again for other Shriner groups, and I'm certain they weren't kidding. She really did a magnificent job. The woman just doesn't know how to do something half-way, whether it's advocating on behalf of Eli in front of a crowd or getting her hands on funds and resources that will improve his health and comfort. She's Queen of the Superheroes.
My job was to keep Elijah occupied and happy, and I did a great job as well. Women kept saying, "Oh look at how cute he is," and I'd say, "Why thank you. But what about my son?" I used that line about six times, and it worked every time. I'm able to sell it because I actually believe I'm cute.
Keep praying for Elijah, as he travels back to Shreveport on Oct. 21 to have an x-ray on the pin in his arm.
Saturday, October 4, 2008
Thursday, October 2, 2008
Imagine a seat small enough for Elijah with a little room to grow sitting on top of a large box for a battery and four wheels. That's Elijah's electric chair. As I type this I wonder why I don't just go down stairs and take a picture of the thing...I'll do that soon.
The electric chair needs some adjustments, which Elijah's physical therapist is coordinating. Soon, the tiny joystick will be situated in Elijah's lap and he will be taught to make the chair go where he wants. I cannot wait for him to get the hang of it.
David and I made the unofficial decision that the electric chair will be for the house only. The thing weighs 150 pounds and we definitely do not have an "electric chair friendly" vehicle...or house for that matter. I anticipate we will be in for some structural changes eventually, but for now, he will learn the great art of "going" around our home. I just know he is going to love it.
Elijah is doing great. He claps any time I say "yay" and he now makes a smooch with his lips when we blow kisses to him. SO CUTE PEOPLE. I know David will post a video soon.
Elijah continues to laugh and make all of us smile. Sophia is proud of Elijah's power chair. She told me that she wished she could have one too. I told her I was so happy she didn't need one. She asked why. I just changed the subject. I am sure some therapist out there could give me better guidance on how to deal with the 6-year-old sister of an extraordinary kid like Elijah, but for now I follow my instincts. My instincts say that I don't elaborate on Elijah's limitations. I focus on his accomplishments not only with Sophia, but also in my own head and heart. Elijah's accomplishments mean so much more than those of ordinary kids. I'd give anything for ordinary, but since I got extraordinary I'm celebrating the clapping hands, smooching, weight gain, sitting up, rolling over, hearing and every single giggle. Today, you should celebrate your ordinary...however extraordinary it may be.
P.S. Please keep praying for my cousin Stacie, her husband Jeff and their two kids Gavin and Garrett as Gavin fights brain cancer for his life.