A Wheelchair, At Last

For the last year, I've realized that part-time wheelchair use meets Balthazar's needs.  I've asked at the last two developmental pediatrician appointments.  Each time I was told no.  Now that we know the boys have a congenital myopathy, a wheelchair is appropriate.  I didn't have to fight, or justify how we would use it.  I already knew exactly what to say, having had so many months to prepare.  It was seamless.  It was the longest developmental pediatrician appointment ever.

After the clinic appointment with the pediatrician, nurse practitioner, dietician, nurse, occupational therapist, and physical therapist, we took our referral to the social worker.  There we picked out our durable medical equipment provider, or DME.  We selected the same DME we use for other supplies.  Then we went to the mobility department in the occupational therapy room.  We made the appointment to have Balthazar fitted for his custom chair, while they found a loaner chair for him.  The day was running so long that I had to leave to pick up Caspar from parish nursery school and take Balthazar to occupational therapy.  I went back the following day (after a lovely evening with a friend and like-minded mother,) to pick up the wheelchair.

Balthazar took to it naturally.  He was steering instantly.  He could break, turn and reverse without instruction.  The only suggestion he needed was to use the metal instead of the tire for a handhold.  We gave him the chance to wheel up and down corridors.  We was able to engage others in conversation instead of falling and struggling.  His outgoing personality could shine instead of being drained by physical exertion.  We made time for a museum trip.  I had to restrain him from going to fast, but otherwise it was a delight.  He could keep up with us in the chair.  He could actually look at the art.  Instead of being frustrated and drained myself, I could experience the joy of the afternoon.  A part-time wheelchair is a long-overdue delight in our lives.

"God Only Gives Special Children To Special People"

"God only gives special children to special people."

So much of the time I feel judged in public.  I feel glared at with hostility or pity or contempt.  I'm used to condescension.  I 'm used to trying to get out a public place quickly when my son with a neurogenic bowel has experienced incontinence.  People in general rarely say nice things to me, when they don't know me.  At best, I receive, "You sure have your hands full," which many mothers of more than one hear.

I'm so happy that another family got to read that note.  If it were me, it would mean more than paying the bill.  Not that I'd mind the bill being paid.  The words - ah, that was the real bonus.  If only more special needs moms heard positive comments, it would make all those public moments so much easier.

The Muscle Biopsy

My eldest son, Balthazar, had a muscle biopsy.  I was perfectly calm until the drive down to the hospital.  At this point, we go to so many doctors and hospitals, I can't get nervous anymore days before an appointment.  Even day surgery is fairly routine.  However, we now know that no anesthesia will ever be routine again.  Congenital myopathies can come with serious, fatal consequences to anesthesia.  We did the biopsy in part to determine what the risk is.  There are many other consequences of a myopathy, but it was the anesthesia complications that really threw me.

He did just fine.  The anesthesiologist assumed that he did have malignant hyperthermia.  He underwent the clean technique for the procedure.  He came out ok, and went home at the earliest time.  By late afternoon, no one could have guessed that he'd had a high-risk surgery that morning.

Now we wait one month for the results.  It will be long and challenging.  We may or may not have a diagnosis.  This could very well be the first of a long series of tests.  None are likely to come with anesthesia, though.  We will avoid all but the most necessary anesthesia procedures until there is a cure for whichever congenital myopathy this is.

The Diapering Dilemma?

I haven't called paper diapers "disposable" diapers in years.  Now, I think the rest of America may start following me with the newly reported knowledge some mothers reuse diapers.  Paper diapers, that is.  Those of us using modern cloth diapers aren't ashamed to admit what we do.  In fact, we're advertising our cute patterns and blogging about our shopping finds.  Have we not been vocal enough about options?

I think anyone can agree that dumping out a supposedly disposable diaper and putting it back on the child is appalling.  That mothers think they have no alternative, though, is heartbreaking.  Diapers are a need.  The convenience of disposables is not.  Sadly, none of the recent articles addressing the report in Pediatrics mentions modern cloth options.  One report even showed a photograph of diaper pins.  Most cloth diapers have velco or snaps, tight fit and are easy to use.

Not one mention of hybrid diapers appeared, either.  And yet, that's clearly what those moms are yearning for when they reuse a disposable diaper.  Hybrid diapers consist of a cloth cover, with either disposable or cloth liners.  They are even widely available at Big Box chain stores, like Target.  They can be used as disposables when budget permits, but like cloth other times.

But what about the argument regarding washing diapers?  That many of the moms who are struggling financially also don't have washing machines?  I smelled a rat.  According to HUD, 84% of US homes have a washing machine, and 81% have a dryer.  If 30% of US moms are struggling to buy disposables, then about half of those do have the option of washing at home, (and that's assuming the worst from interpreting the statistics.)  Why not pressure laundromats to devote just one machine to high temp washes, as would be appropriate for cloth diapers?  Surely there are more solutions than just assuming that convenience products are the only option.

It's a shame that the mothers most in need of information about their options are the ones not getting it from their pediatricians or the media.  More mothers need to know about cloth options than just the upper middle class moms with time to consider their eco-style.  There is a diaper crisis in the US, but it's a lack of information, not a lack of access to convenience.

It's Not The "N-Word"; It's The "Of Course," Paula

As the consequence of Paula Deen's comments continue to unfold, I am compelled to offer my objections to her actions.  It isn't that she used an offensive word.  It isn't that she admitted to using it in a deposition.  It's how she admitted to using it.  "Yes, of course," comes across as a relaxed, even flippant, attitude to the word, especially in a deposition.  Instead of expressing herself in a legalistic, specific manner, "Once in 1986, to my husband in reference to a perpetrator of a crime of which I was the victim,"  the "of course," comes across as a word with which she is comfortable.  It doesn't sound like a word she used once over twenty years ago.  It sounds like she's admitting to a regular part of her vocabulary.

Alas, Paula is oblivious to what I find most cringe-worthy in her admission.  She insists that she never addressed a person directly with that word.  She seems to think that absolves her of the charge of racism.  The ugly truth is that many people suspect Southerners of bandying about racist terms behind closed doors.  From their point of view, opinions haven't changed one iota in the American South, but only the degree and venue of their expression.  They suspect Southerners of desiring to go back to antebellum days - in all their abhorrence - if only they could get away with it.  By admitting she said that word to her husband when they were alone, she's confirmed suspicions of what Southerners are really like, under their buttery surface.

Her supporters during the first week of the scandal fuel that fire.  Sadly, I have to admit a validity to their racism.  I can't defend my fellow Southerners in their behind-doors bigotry.  I have heard this attitude myself, as a Georgia native over 40.  All I can say is it's wrong.  This ends with me.  I am willing to learn; I am willing to teach my own children better.  Even though I was exposed to it, I don't have to perpetuate it.

Here's the rub, Paula: it's not about how one looks or one's intentions. As she is all too painfully discovering now, the road to hell is paved with good intentions.  We're not going to get past racism by pretending all the hard work was already done decades ago.  It's not enough to say as long as we are sweet and smiling then we don't have to look at the unintended consequences of our actions.

Conservative vs. Republican

In the last few years, I've heard many people presume that the U. S. Republican party is where "conservatives" belong.  Then they espouse beliefs suggesting they have no idea how the Republican party was founded.  A quick refresher:  the Republicans came about in the 1850's to take a stand against slavery.  Economics issues and free enterprise were not enough.  They advocated social change.  It isn't the Republicans who wanted to conserve antebellum life.  They fought a war over the unacceptability of a racist society.  While most Republicans today are conservative in many areas, it isn't valid to assume they want to conserve outdated, racist agendas.

Here lately, I've heard from individuals who seem to think that about 30 years ago the two major U.S. parties just flip-flopped.  They might suggest that some ideas filtered around.  I've been wanting to pass around Ann Coulter's books to them.  The Republicans from their inception have been the party of racial progression and integration.  A few racists may have walking into the party in the last few years, coming to a place of agreement on other social issues.  They need to open their eyes and see for themselves if that's really where they want to be.  A racist would have a challenging time being a Republican.  Consider at Senator Byrd's record.  Consider the Dixiecrats of 1948.

There are many racists who also happen to be conservatives.  I think everyone can agree on that.  However, there are also racists who are liberals, anarchists, progressives, libertarians and independents.  There are racists everywhere.  Looking at history, it wouldn't be surprising at all, however, to find a racist in 2013 in the same party that once championed President Buchanan, President Lyndon Johnson, Senator Robert Byrd and Governor George Wallace.  Merely voting for President Obama doesn't erase a lifetime of racist ideas, actions and principles.  If anything, it makes one wonder how Obama could reconcile himself with a party of such long-standing opposition to individuals such as himself.

A Stand Against Racism

As a native of the state of Georgia, I am horrified by the comments reported in the media attributed to Paula Deen.  I am embarrassed that we originate from the same place.  I am mortified that we have mutual acquaintances.  I utterly disavow any connection that one might associate between us.  I have never met her, nor do I care to, other than to reach out in Christian Charity.

Her words, under oath, are reprehensible.  I will not repeat them here; they are widespread.  I only wish to go on record that no idea, principle or sentiment of prejudice of this sort is supported here on this blog.  I cannot reconcile her opinions to anything I hold dear as a Christian.  I realize that there are many people who are Christians also share her point of view.  These ideas are not from love.  They are not kind.  If I were to have a few moments alone with her, I have a few scripture passages that I would love to discuss.

Galatians 3:28

For ye are all the children of God by faith in Christ Jesus. 27For as many of you as have been baptized into Christ have put on Christ. 28There is neither Jew nor Greek, there is neither bond nor free, there is neither male nor female: for ye are all one in Christ Jesus. 29And if ye be Christ's, then are ye Abraham's seed, and heirs according to the promise.

1 Corinthians 13

1	Though I speak with the tongues of men and of angels, and have not charity, I am become assounding brass, or a tinkling cymbal.
2	And though I have the gift of prophecy, and understand all mysteries, and all knowledge; and though I have all faith, so that I could remove mountains, Mt. 17.20 ; 21.21 · Mk. 11.23 and have not charity, I am nothing.
3	And though I bestow all my goods to feed the poor, and though I give my body to be burned, and have not charity, it profiteth me nothing.
4	¶ Charity suffereth long, and is kind; charity envieth not; charity vaunteth not itself, is not puffed up,
5	doth not behave itself unseemly, seeketh not her own, is not easily provoked, thinketh no evil;
6	rejoiceth not in iniquity, but rejoiceth in the truth;
7	beareth all things, believeth all things, hopeth all things, endureth all things.
8	¶ Charity never faileth: but whether there be prophecies, they shall fail; whether there betongues, they shall cease; whether there be knowledge, it shall vanish away.
9	For we know in part, and we prophesy in part.
10	But when that which is perfect is come, then that which is in part shall be done away.
11	When I was a child, I spake as a child, I understood as a child, I thought as a child: but when I became a man, I put away childish things.
12	For now we see through a glass, darkly, but then face to face: now I know in part; but then shall I know even as also I am known.
13	And now abideth faith, hope, charity, these three; but the greatest of these is charity.