We’re moving

Time for updating things. We haven’t kept this blog up very well–the demands of taking care of our daughter and our parents have just been too much. It looks as if we might have more time for writing, though, and so to further that we’re integrating this blog into a different structure. If you happen to still be following this blog, please join us at our new home.

 

Words matter

People who know me well know that sometimes when angry I use impolite language. I’ve been known to say things that the average person would find to be profane, even obscene. I’m not proud of it; it’s something I struggle with.

Nevertheless, there are words I cannot bring myself to utter, words that I hear other people use almost routinely. Many of these other people happen to be older, but it’s not required. Many of them would be horrified if a teenager nearby dropped the “f-bomb” (I can’t say that I approve, but when you get right down to it, it’s just a crude word), and yet have little or no problem uttering a word that definitely leaves certain members of the human race feeling degraded, disrespected, dehumanized.

The N-word, as it is called, has almost dropped out of usage, and I am glad. I know that some rappers use the word in a defiant manner, and even that usage makes me uncomfortable, but at least they are practicing the strategy of subjecting a denigrating term to the kind of use that can turn it on its head. (Did you know that “Christian” was considered a derogatory term by Greeks and Romans who first used it? The early followers of Christ adopted it, though, and turned it into a term of honor.) Most of the few people I hear using the word these days at least seem to have enough sense to act a bit ashamed of it. It is so distasteful to people that we have, as a society, even shied away from the legitimate word that it twists and dishonors: Negro. The latter word carries with it the potential for offense, and hardly survives in the English language except in the names of such great organizations as the United Negro College Fund–and even there, it is hard to find the actual word, since almost everywhere except in the “History” links, the Website simply calls the organization, UNCF.

Not so a similar term that I hear people of all ages using with impugnity, a word I can hardly bring myself to utter and that equally denigrates a huge population of humanity, at least in their experience and their family’s. Students in my college classes, and even members of my own family who I know love my daughter, use the word “retard” or “retarded” to describe ideas, institutions, television shows, and all manner of other things they consider to be imperfect or lacking, with no apparent concept as to how it might affect my daughter if she were present, and certainly affects me.

The slang version of the term happens to be spelled the same way as the legitimate version. The effect for others is that they do not experience the word as demeaning the way the N-word is; the effect for me is to make the legitimate version as jarring and insulting as the slang version, so when we receive a letter from one of the state agencies that provides services for my daughter, and I have to open a letter from the “Department of Mental Retardation,” I feel a bit slimed, even though I know quite well that the people who work there work hard to help us take care of her.

Not out of political correctness, but out of concern for others as compelling as that which has driven the N-word underground, and out of the abundance of other more appropriate words to describe either the actual condition or perceived inadequacy and imperfection, I would like to ask you to join in the effort to eradicate the R-word from common usage. To see more about this, please visit the page put up by the Special Olympics organization. As it says, “Change the conversation… stop using the r-word.”

 

Alaska proclaims Trisomy Awareness Month

I haven’t posted anything in a long time–I guess that’s good, since it pretty much indicates that there have been relatively few crises with Hannah.

Unfortunately, that probably also means not a lot of people are reading the blog, at least not like they used to. Blog writers know that to keep up interest, you have to keep posting, and, well, I just haven’t.

Still, for those still reading (or who start reading), this bit of news might be of interest.

Remember Sarah Palin? Yes, that one. Not as Vice Presidential candidate now, but as governor of Alaska, she has issued a proclamation declaring March 2009 as Trisomy Awareness Month.

 

Recipe for helping Hannah

We’re working on a cookbook as part of the fundraising effort for adding a room onto our house to give more room for Hannah, her equipment, and her nurses. First, of course, we have to gather recipes. Hannah’s blog has the information succinctly published already.

 

A child with a special special need

I don’t know this child, but I know someone who is caring for this child. I know a little bit about her medical career, and if she says she can barely talk about the situation, it must be bad. Prayers needed. You can see details on Terri’s blog.

 

Need help with insurance stuff?

Thanks, Erin, for passing on this resource! Family Voices is a Web site that connects you with folks who will help you figure out the tangle of insurance–a challenge for anyone, but especially for those of us with special needs children.

Their mission statement says, in part:

Through our national network, we provide families tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.

There is a state-by-state breakdown. The site for Tennessee (of special interest to us, of course) says:

Family Voices of Tennessee (FV Tennessee) provides information and support to families as they navigate health care systems in Tennessee as well as to the professionals who serve families. This assistance is provided in a variety of ways, including: individual information and referral, support and focus groups, training, parent matching, conferences, topical calls, listservs, newsletters, surveys, and website.

So they’re not going to sit down and help you fill out an insurance form, but they will help you find what you need, and they provide lots of solid information. It’s not just about insurance, but there’s a lot of good info there.

 

Hannah to be in nativity

Much has happened since the last time I posted, which seems always to be the case. I’ve been going regularly to Fairview United Methodist Church, which has a unique ministry for special needs children and their families. The update: the church has invited the special needs kids to be the “cast” for a nativity play on Dec. 21. The church has a “buddy” assigned to each special needs child during Sunday services, and the buddies will have non-speaking parts in the nativity to help the children as needed.

This is a cool thing. I’ll keep you posted.

 

Disabilities books

No matter how long you do this, you always come across “new” stuff. (“New” because it’s new to me.) I just stumbled across Disabilities Books. It seems to have been around since 2004. The site is divided between “books of interest to PARENTS of children with disabilities, family members, and professionals who serve children and their families” and “books of interest to ADULTS with disabilities, family members, and professionals who serve adults and their families.” I could go broke in most bookstores, but just about every book I come across in the parents section turns out to be something I want–except for the ones about Massachusetts. I’m sorry, I love Cape Cod, but I have no desire to live in Massachusetts. :)

 

99 Balloons

My wife just shared with me an online video called 99 Balloons. I cried through eating lunch, and it wasn’t because the food was bad, but because I watched the video while I ate. Good idea to watch the video. Bad idea to eat while doing so. You can also see the original blog that chronicled Eliot’s journey, also called Ninety Nine Balloons.

 

The hardest answer: not yet

Anyone who looks at this site regularly will notice I haven’t updated it much in recent months. That’s partly because of just being overwhelmed, but it’s mainly because of the nature of writing for me. I think I’ve mentioned in some of these posts that I have never in my life experienced writer’s block, until Hannah’s challenges manifested. It’s not that when she’s sick, I can’t write. I just haven’t been able to concentrate enough to write.

Really, when you get right down to it, I’ve been exhausted. The nursing at home now is a lifesaver, but after four years of taking care of Hannah 24/7, I am still trying to get over exhaustion.

Basically, these days I can only write when I feel good, and I haven’t felt good in a long time. So when you don’t see postings, it’s not exactly bad news, but it’s not good news.

Still, I’ve been mulling over something the last week or so, and I want to share it, for whatever it’s worth.

I haven’t felt abandoned by God, but I have to admit to having what turns out to be a common response to a commonly quoted verse (1 Cor. 10:13). If you’re not familiar with it, it says:

No temptation has seized you except what is common to man. And God is faithful; he will not let you be tempted beyond what you can bear. But when you are tempted, he will also provide a way out so that you can stand up under it.

Yes, it’s Bible. But if one more person quotes it at me, I am likely to see how much he can bear. The common response? “I wish God didn’t have such a high opinion of me.”

So, I was driving to work and listening to a radio station I don’t usually tune in much, Praise 96.3. I enjoy Southern gospel, but I am nowhere near familiar with the singers, groups, or popular songs within that genre. So I don’t know if this is a wellknown song or not. But it certainly struck me.

The song is about the story of Jesus and the raising of Lazarus, found in John 11:1-43. It’s a familiar story, and you can look it up if you want to refresh your mind of the details.

The focus of this song, though, was on the (for lack of a better term) preconceived notions of Mary and Martha regarding the proper timing for God’s response. “Please, God, heal Lazarus.” “Please, God, get Jesus here on time.” That sort of thing.

The passage says they sent a messenger. Since there is some disagreement about where Bethany was located, it’s unclear how long a time might have passed, but in any case, verse 6 says, “Yet when he heard that Lazarus was sick, he stayed where he was two more days.”

When Jesus arrived, Mary and Martha each said separately, “If you had been here, my brother would not have died.” The implication, whether in lament or in chiding, is, “You’re too late.”

The song, however, says in the chorus, “Four days late, and right on time.”

I have to admit, I have a problem with this one. And yet, it lifts me up. Maybe I don’t know it all. Maybe I am like Mary and Martha and every other reasonable person hanging around that grave. It’s reasonable to think that it’s too late, the prayers haven’t been answered, or the answer was “no,” and I just have to learn to live with it.

It lifts me up to remember how often, how frequently, somebody in the Bible thought they knew how the story ended, and they were wrong.

I just wish I could remember it more often.