Jeff Update...

Nothing too exciting, but they took the stitch out (it's been stitched shut since April 24 to heal up) and everything looks really good. The doctor seemed pleased with the progress and told us to go ahead and make an appointment with the ocularist (the lady who makes eye prosthetics)so he can get an eye in there. He also wants to go ahead and fix the eyelid (it's droopy and has been for years)so it will sit more naturally for him. Apparently they take some fascia out of his leg (yet more harvesting of pieces from other parts of his body. Interesting.)and create a "sling" with it to his brow bone, so his lid won't sag. Jeff is always so hesitant for things like that; he feels really selfish doing something for cosmetic purposes, but the doctors act like they really want to do it and want Jeff to be happy with their work...also an interesting perspective. If the $$ turns out okay we will go ahead with it. I think it will be okay. I found out the prosthetic eye could be as much as $2600, but sometimes when there is no insurance to cover things like that they will make deals, so let's pray for deals! I hate to use the phrase "Jeff deserves it" but that's kind of how I feel. In the big scheme of things, we really deserve nothing. Every good thing is a gift, nothing should be expected. But Jeff endures a lot, and I think we would all agree that living with no front teeth and a funky eye that everyone looks at could be wearisome. I was complaining the other day about a couple of blemishes on my face (yes, the 43 year old with pimples AND wrinkles. Lovely.) and he just laughed at me and told me I was beautiful regardless, and I'm thinking "yea right..." But then I realized that I think Jeff is as handsome as the day I met him, no teeth and funky eye and all, and I believed him. When you're married for so long and you find yourself MORE in love, it's pure bliss. We're so on the same plane right now and it's so amazing and secure and beautiful, right in the heart, in the gut. I can't even put it into words actually. Tomorrow is our 21st anniversary too, and I've now known Jeff for 25 years, more than half my life. Crazy huh?

The 'Eyes' have it...

Just in case there is one human who reads this, Jeff is doing okay after his surgery yesterday. As usual for Jeff, it's never as easy as it seems and this one was practically as crummy as his original evisceration eight years ago. But the hard part is done anyway, and he now has a fancy new dermal-fat graft from his tummy inside his empty eyeball. Yummy, huh? The surgery ended up being longer and more difficult than originally planned. Apparently the old implant in his eyeball (made of a material that was rough-surfaced) had not only eroded away the tissue that enclosed it, but it was stuck to the tissue in other areas. So getting the old implant out was tough and bloody. His head is sore and swollen. But the Docs thought everything went really well and he's on his way now. His eye will be sewn shut awhile and in a few weeks we'll worry about getting his prosthesis in. The old one probably won't work but it could. He also needs some work on his eyelid. He's a brave and good man, he is. He never complains or whines about it. And most of us would be tired of people staring, and never looking the same, or like ourselves. Jeff just goes with it. Deo Gratias.

Of tests and surgeries...

Okay. So I am looking into grad school, with the intent to work on my Master of Education and Interdisciplinary Early Childhood Education Certificate so I can be a Developmental Interventionist for wee ones with Down Syndrome. (What a MOUTHFUL!) Therefore, I realized I would need to take the Graduate Record Exam. In short, it stinks. I took it yesterday after very little studying and scraped my way through several hours of torture including word analogies and antonyms, reading comprehension, two essays, and math problems. I did finish with above-average scores, but it is my observation that the very essence of the test is not to test actual knowledge, but how well you take a test. Basically every question is a trick question. At $140 a pop it most surely is a money making scheme. The good news is that I can take it several more times this year if I want to improve my score. Yea, right.
Now I have to figure out how to fund grad school. Or maybe I ought to go into the standardized testing business and become a millionaire. Sounds good to me.

Onto other more important issues. Jeff's fake eye has been steadily getting more irritated, goopy, droopy, and generally gross. He finally broke down and went to have it checked out. Apparently the fake "eyeball" that is back in the socket (not the cap that "looks" like an eye) has worn through the flesh that encloses it. And apparently that is because of a general defect in the material from which it is made. The Dr. said they have seen a lot of this with this brand of prosthetic,, folks coming in years later with the thing wearing through. So, Jeff will have to get a whole new prosthetic ball in there. That entails pulling the old one out, re-wrapping tissue around it, possibly getting some extra from his abdomen, then placing the new tissue-wrapped ball back in the socket. Gross. Then, he will have to possibly get a new anterior cap if the old one doesn't fit anymore (which cost $1000 back in '01) and get some work done on his eyelid that has become saggy. Of course, he loves all of that. The good news is that it's fixable and he won't have to deal with a perpetually runny, gross eye. Jeff's always very patient with that kind of stuff but I know it must get old. People stare at it and wonder why his eye is droopy and runny. I close one eye a lot when I'm doing things just to see what Jeff's world is like; it lets me not forget. Please pray for his good soul.

Oh, if you're wondering about the hand x-ray, take note of the pinky. That's Jeff's more recent mishap where he chopped the end of it off when he smashed it in a trailer hitch here in the driveway. It looks fine now, just a tad shorter! ;-)

the facebook frenzy...

This facebook thing is rather fun. In a matter of a couple of weeks I have reconnected with a dozen or more people from my ever so distant past. A few observations:
1. The majority of my classmates I am meeting on fb are liberal. It is painfully apparent that I am WAY more conservative than I ever thought I could be. What a difference 25 years makes!!
2. No one has big families. I LOVE having a big family. I guess we never take vacations and don't live in a McMansion, nor do we drive new vehicles (Jeff and I have a pact never to drive a vehicle which was manufactured in the decade in which we are living!!), and we rarely go out to eat or to movies. But the exchange is PRICELESS.
3. Everyone is everywhere. I wish we loved our hometown enough to stay in it. Greenhills was tremendous. I was way too cool to actually STAY there. That being said, I love Kentucky. It's more me than Cincy is. I'm pretty much a redneck.
4. The diversity of our GH class is so interesting. We are all rather well-educated I think. They did a fair job in that department!
5. I need to get off this computer and get to work. Laundry waits for no (wo)man. God bless anyone who actually reads this banter! ;-)

Special Olympics and the R-word

I know I really shouldn't be sensitive. Back in the day when I was much younger and inexperienced/unwise/unfeeling/uncaring/shallow/infantile I made Special Olympics jokes or called someone or something "retarded." I would make fun of "retarded people." Folks do it all the time. Just like when someone takes the name of God in vain, I cringe inside each time. When someone says "Jesus Christ!" to exclaim disbelief or irritation about something, I always say to myself "Bless His Holy Name." But when someone says "that's so retarded!" I usually keep silent, although I always feel like I'm about to bust. I'm not alone. Ask any mother or father of a child with DS- a child who may have had a heart surgery (or two) before his first birthday, or was born with such low muscle tone she is just limp, and the mere act of nursing is next to impossible. Ask those parents if that child is any less of a person than the well child next to him. Ask those parents if they love that child any less because he's "not perfect." Every time I look at Angela, I don't see a retarded/imperfect/broken child. I see OUR child, whom we love just like the others, her own perfect little self and all her assets and flaws there to see like every other child on earth. Now, whenever I see someone else's "handicapped" child, I know that is THEIR Angela, and well, we just "know." It's a silent sorority of mothers who love their children, period.

I can't make it stop. Even the president will do it, and he's supposedly the nonjudgemental messiah here to make all men equal. He can be the ultimate representative of the downtrodden poor, all the while counting his $51 million, laughing while the working (and not working) people wallow at his feet as he promotes his sham. And makes retarded jokes. Isn't he funny and witty? Give me a break.

Faith and Reason

"If the work of God could be comprehended by reason, it would be no longer wonderful, and faith would have no merit if reason provided proof." -Pope Gregory I

I came across this today while reading a DS article and it struck me just how much faith plays a role in my life. I have a friend whose blog is often wrought with drama and annoyances and "issues," and how hard it is to overcome these issues and how every little problem is SUCH an inconvenience. And I know my faith is what keeps me from that vortex of wishing things were different, or better, or somehow smoother. I guess we all wish for things to be better, and usually it's financially better, of which I claim no exception, and we may even pray to God that He somehow lifts us out of worry and stress-heck, a nice lottery check would be nice. But that is where a good Christian continues... God, I wish you could help me with xxxx problem. But if it's Your will that it not happen the way I would wish, so be it. I will carry each cross to the best of my ability, for You. That is the comportment we should have. And it ain't easy. But like all habits, good and bad, once you are in the habit of acceptance, working like it's all up to you and praying like it's all up to God, it's easier to do.

I remember when Jeff had his serious accident, a friend, blubbery and distraught said to me, "Shelley, he might lose his eye!" My first and only response was "But the other eye is okay, right?" To which someone might say to me, "But what if the other eye weren't alright?" Well, then, I say we go to the next "good" thing. Can he talk? Feel? Hear? Is he dead? If he's dead, was he wearing his scapular? Can we find the priest now? There is bound to be something good, somewhere. And we just need to focus on that.

And all of these inner conversations and thoughts and wishes are due to my faith. Not what I can see and touch and count with reason. I always find it interesting how the erudite like to belittle the faithful, as if their reason and science are oh so much superior in intelligence to the sheep who follow an unseen God. I certainly don't feel any dumb-er since I became a Christian. In fact, I have grown in wisdom and love that I never would have had. I would be a cold sob right now. Really.

I love Thee, O Christ, and I bless Thee,
Because by Thy Holy Cross Thou hast redeemed the world. Miserere nobis.

Our chattering Angela...

Angela is quite a character these days. Since most of you don't have the pleasure of having a child or sibling with Down Syndrome, I must say we parents tend to micromanage everything. For example, most of us don't worry whether our child will be able to distinguish his colors, match and sort objects by color or shape or whatever, or say his words clearly and meaningfully before he goes to kindergarten. Because most the time we just know they will do those things whether we teach them or no. But when you have a child with DS, and all the research tells you that early intervention and practice sets up the neural pathways that may not connect otherwise, you tend to watch and worry and, if you're like me, wonder if you're ever doing enough.
At 2 1/2, Angie talks A LOT. Unfortunately, most the time we have NO IDEA what she is talking about. She points and uses appropriate facial expressions and inflections and gestures, and most the time I know what she's trying to get across because some of the words are quite good. But every so often I have to just throw up my hands and say, "Ang, I have NO idea what you're talking about." She gets a little frustrated by this, because usually she is begging for some food item I am denying to get for her. Sometimes it's like she is telling a story, recounting something. But it's a lot of gibberish. Thankfully, she has the best speech therapist in town. Angela's therapists (speech, physical, and developmental) are known as the "dream team" around here. And her speech therapist assures me that Angela's incoherent chatter, scattered with s's and o's and ah's and t's, is merely her practicing for when she gets everything together, and she foresees Angela having excellent speech.
I've always said Ang's speech is most important to me. I want people to know her, and if she can't carry on conversation well, no one will listen to her. I don't want her to be invisible like that. I friend of mine is deaf, and she is so funny and witty. She reads lips very well, but she doesn't speak very clearly; she is hard to understand. And I realize now that she is easy to "ignore." I don't mean ignore on purpose, but it takes actual work to converse with her because you have to concentrate so hard. And most folks are in too much of a hurry to chat with someone when it requires work... So, yet another lesson comes from being Angela's mom. I never would have thought of that if it weren't for little Angie. She teaches us something every day.