questions and maybes

Yesterday was a Dr. MacDonald day:  we took Jonathan for his regular six-month checkup with the pediatric neurologist who monitors him for seizures and anti-seizure medication.  Actually, this wasn't quite a regular checkup; we'd moved up his appointment date because in the last two months he's had two or three "absence" seizures.

In the last instance, which occurred three weeks ago, we had just come back from Jonathan's dental appointment, which had gone very well, and he was sitting on the floor doing a jigsaw puzzle.  He was kind of grumpy about being denied his usual cheese-and-crackers snack because of the dental freezing.  Then Richard spoke to him about something and he made no response but just stared into the distance.  His pupils were dilated, and his body was stiff  so that we couldn't lie him down.  This lasted about a minute or two; then he slowly began to come around:   I asked, "Jonathan, are you tired?" and he said, "Tired," in a dreamy voice.  Then he asked about the cheese and crackers again, so we knew the seizure had passed.  He was sleepy, though, and when we suggested he go to bed he agreed, even though it was only 5 p.m.  He woke up about three hours later and was completely back to normal and hungry for the supper he'd missed.

The appointment today was good; yet, as we've learned in the several years we've been seeing Dr. MacDonald, there are always more questions and maybes than definitive answers.  Did the absence seizures happen because one of his medications was eliminated back in November?  Maybe, maybe not.  Is he outgrowing his current dosage of the one medication he still takes?  Probably not; his weight hasn't changed much since last summer.

Interestingly, the blood work Jonathan had done in November shows that he has a deficiency of carnitine,  which is a compound made of two essential amino acids (hmm ... that sounds like an advertisement for cereal).  Valproic acid, the antiseizure medication Jonathan currently takes, can reduce carnitine production and have some toxic effects on the liver, so the doctor would like to try carnitine supplements.  Will this help with the seizures?  She's not sure; it might.  So that's what we're going to try.  We will see her again in four months -- unless he has another seizure episode, in which case she wants us to call her and she'll look into setting up an EEG.  He hasn't had one of those since 2004, and in that instance a sedative was used to put him to sleep; she would like to get one without sedation, but the idea of him lying still long enough to allow the electrodes to be patched on and a good reading taken hasn't seemed very realistic up to this point.

So we continue to take things one day at a time -- not that we have any choice!  But after all this time we've realized certainty is unlikely.  Taking the next step that's presented to us is all we can do.

two Monday morsels: A good life; vulnerability and dependence

Two of my favourite bloggers are Amy Julia Becker (who blogs at Thin Places: Faith, Family, and Disability) and Ellen Painter Dollar (who blogs at Parenthood, Disability, Ethics, and the Crooked Way of Grace).  Both of them write in a challenging and honest way about disability and faith issues.  

Each of them has written a book as well, and I've recently bought and read both.   Amy Julia's book A Good and Perfect Gift tells about how she and her husband learned two hours after their first child's birth that the baby, Penny, had Down Syndrome.  She chronicles her journey to accept and understand this reality while falling completely in love with her precious daughter.  Ellen's book No Easy Choice was written in light of the fact that she has a genetic bone disorder (osteogenesis imperfecta), which the oldest of her three children also has.  She writes about many spiritual, social, and ethical aspects of reproductive technology while explaining how she and her husband investigated various options that might allow them to have more children who did not have OI.

  Both books discuss, among many other things, how we understand disability from a Christian perspective, something which has a lot of significance for me since both of our children have special needs.  But this post isn't intended to be a book review (which is why my descriptions of the books above undoubtedly seem inadequate).  Rather, this being my "Monday morsel" post day, I've decided just to give an excerpt from each book that I found particularly meaningful. I would highly recommend both books!

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Until quite recently, human reproduction and our children's genetic makeup were mysteries beyond our control.  In late twentieth-century America, widely available contraception and legalized abortion gave people some limited choices over when they would and would not have children, but they still had no control over what sort of child they would have when the time came.

New technologies are changing that, and so a new ideal is creeping into our notion of what makes a good life.  We can choose whether to transfer one or two or five embryos; whether to selectively reduce some of those embryos if too many implant; whether to weed out genes that cause OI, cystic fibrosis, Huntington's disease, and breast cancer; or whether to increase the odds of having a girl over a boy.  With all these possibilities, we begin to feel that we must make the right choices to ensure the best life for our children.

But [Hans] Reinders points out the futility of equating a good life with one over which we exercise choice.  If you ask parents of children with severe disabilities whether they would choose to conceive that child if they knew about the disability ahead of time, both a "yes" and a "no" answer pose problems.  If they say "yes," then they are somehow surrendering to the suffering their child endures, saying it doesn't matter, when they surely know it does matter.  But if they say "no," then theya re saying their child's life is not good, when they surely know it is good.  The answer to this conundrum, Reinders says, is to sever the connection between choice and life's goodness, to recognize that "if my life were different from what it happens to be, then it would also be good." 

- Ellen Painter Dollar, No Easy Choice

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The most natural words to describe [Penny] were ones like cute, sweet, fun, outgoing.  But then the clinical words flitted through my mind:  chromosomal abnormality, mental retardation, disabled.  And the politically correct ones:  special needs, intellectually challenged.  I still didn't know how to describe her in a way that didn't ignore or minimize her extra chromosome but that also didn't define her in entirely negative terms.  The words mental retardation were helpful in describing the fact that Penny would learn differently, and more slowly, than typical children.  But the fact that retard and retarded had become slurs in our culture eliminated their helpfulness.  Then there were the words disability and abnormality.  I thought of those signs on the highway about disabled vehicles.  Penny might not be able to do the same things on the same timeline as others, but she was not a "dis-abled" human being, she was not a broken-down, can't-function-until-a-mechanic-comes-along, little girl.

One word I did like was vulnerable.  Penny was vulnerable -- physically, mentally, even socially and emotionally.  Another was dependent.  Penny was, and would be, dependent upon others for some level of care throughout her life.  Perhaps the reason I liked those words was because they described what I wanted to admit about myself.  That I, too, was vulnerable, much as I liked to see myself as invincible.  That I, too, was dependent upon others, much as I liked to think of myself as self-sufficient. 

- Amy Julia Becker, A Good and Perfect Gift

 *****

This post has been linked to Modern Mrs. Darcy's May "Twitterature" post.



lighting the fire of learning

Today in my inbox I received the regular weekly e-newsletter from Queen's University.  Although I'm employed there, I confess I rarely read much of the newsletter; maybe it's because as an online, off-site instructor I don't always feel closely connected to the campus.

 But I'm very glad I took the time to read this article.  It highlights the university's Inclusive Post-Secondary Education Initiative:  the Faculty of Education partners with H'art, a local art school for students with intellectual disabilities, providing opportunities for the students to attend university classes and receive their Certificate of Learning.  One of the coordinators says, "Our job is about lighting the fire of learning and empowering these students .... This is a meaningful model of inclusion."

Two students are getting their Certificates today.  That makes me proud:  of the students, and of the university's creativity and inclusivity.

UPDATE:  The Kingston Whig-Standard has published an article today (April 30) about the two graduates; you can read it here.

Monday morsel: "dying to live"

This past week I've been reading Rob Bell's Love Wins.  This book, which challenges some conventional Christian assumptions, raised some controversy when it came out a couple of years ago, but I'm enjoying it:  it's bracing, like being hit with a splash of ice-cold water.  ("Thanks, I needed that!")  And I like Bell's style, which is both provocative and poetic.  Here's a passage I especially liked:


 
"When we say yes to God, when we open ourselves to Jesus's living, giving act on the cross, we enter in to a way of life.  He is the source, the strength, the example, and the assurance that this pattern of death and rebirth is the way into the only kind of life that actually sustains and inspires.

Jesus talks about death and rebirth constantly, his and ours.  He calls us to let go, turn away, renounce, confess, repent, and leave behind the old ways.  He talks of the life that will come from his own death, and he promises that life will flow to us in thousands of small ways as we die to our egos, our pride, our need to be right, our self-sufficiency, our rebellion, and our stubborn insistence that we deserve to get our way.  When we cling with white knuckles to our sins and our hosility, we're like a tree that won't let its leaves go.  There can't be a spring if we're still stuck in the fall.

 Lose your life and find it, he says.

That's how the world works.

That's how the soul works.

That's how life works 
when you're dying to live."

Found in translation

One of the things Jonathan's E.A. ("Mr. O") works on most with Jonathan is his verbal skills.  Currently Jonathan speaks mostly in phrases of two or three words, generally very concrete expressions that get his point across but don't contain much grammatical structure.  Mr. O works with him on stretching out his sentences so that he can express complete thoughts like "Can I have some orange juice please" or "Can you get the black football please" -- and  Jonathan is making considerable progress in this area.  While of course we encourage this stretching-out of sentences, we can't help but be impressed, and sometimes amused, by the ingenuity of some of his makeshift attempts.

- "Open door away." Translation: Close the door.

- "Button away."  Translation:  Don't leave the remote-control on the coffee table; put it back in the remote holder.

- "No Diana.  Diana over."  Translation:  I don't want the supply E.A. named Diana to come, even though she is very nice and I like her; I want Mr. O.  (This one also reminded me of another moment when Jonathan was about six, and he apparently had a stomach-flu bug but we didn't realize what was wrong when he said "Itchy belly" and "Kiss belly."  He had supper, which was soup; then a couple of hours later he was getting ready for bed and suddenly everything came up.  He was sitting on the bathroom floor, his PJ's all covered with gross stuff, and said calmly, "Soup over.")

- "White ball."  Translation:  I want Dad to pick me up after school and bring the white ball so we can play yellow-blue-red for a little while.

- "No wash it."  Translation:  You can give me a bath, but I don't want you to wash my hair.

- "Mommy nap."  Translation:  I don't want Mom to go to a meeting tonight and leave me to be put to bed by Dad; I want Mom to stay home so she can do it.

- "Nap ... Mommy!"  Translation:  OK, fine, Mom can go out to her meeting, but I expect to see her as soon as I wake up.

- "Sometimes a shock."  Translation:  Sometimes when I pull my fleece neck-warmer or my sweater off over my head and then touch something, I get a zap of static electricity.

- "Saw chicken nuggets Grandpa house."  Translation:  Remember when we went on a trip to Grandma and Grandpa's house in PEI, and we stopped at McDonald's and I had chicken nuggets and fries and chocolate milk?  Good times. 

As I thought about these expressions I was reminded of Romans 8:26 in the Bible:  "We are very weak, but the Spirit helps us with our weakness. We don’t know how to pray as we should, but the Spirit himself speaks to God for us. He begs God for us, speaking to Him with feelings too deep for words."  (Appropriately, this is taken from the ERV:  Easy-to-Read Version.)  

Just like Jonathan, we all need someone to listen to us and understand us when we have something to say, even if we don't know quite how to say it.