So far, so good

21 Jul

Maura’s been doing well so far with the seizure med weaning.  This is Week Three, and we’re going down 1 ml per week, so I’m guessing we’re hitting the point where if something’s going to happen, we’re going to start seeing it.

Now I have to knock on wood because I feel like I’m jinxing things.

Okay, wood-knocking over…

Like I said, Maura’s doing well.  She’s been chatty still (and chatty enough that friends who hadn’t seen her since January noticed how much more she seemed to be talking), balance is still good, no odd blinky faces.  So we’re carrying on with summer – which so far is a combination of watching too much My Little Pony, wandering about the yard playing with dolls, and thinking she can mix up her own things in the kitchen.

So yeah, we’re also now working on “cleaning up the mess you made emptying 14 packets of drink mix onto the counter” and other such things.

Meanwhile, I am still working with a personal trainer, who is still forcing me to curse at him at some point in the work out.  But I’ve lost some body fat and gained muscle, and am less wary about hefting Maura off the ground and injuring myself, which is the main point of it all.  Now if I could just stop shoving the wrong foods in my face, maybe I can lose more weight.  I’m looking at you ice cream and Coca-Cola.

(Disclaimer for if my personal trainer reads this – Josh brought home the ice cream.  His excuse was “It’s hot out.”  Which it was.  The Coca-Cola was my own fault.)

I am also realizing that it’s now been a year since we’ve moved here.  It’s still not Ireland, but it’s not a bad place to be either.  Especially in the summer.  I’m now regretting getting rid of all my shorts while we were in Ireland, because I could have used them this summer so far. I am also still in love with my big American washer and dryer.  That has not gotten old yet!  I miss the public transport in Dublin, the trains and buses and taxis.  I miss the rainbow that constantly appeared behind my house, and our fabulous neighbors next door.  I miss old buildings, and the landscape, and the people, and the pace of life.  But the other day, as I drove through the sun here, I thought “You know, it’s not so bad here.”

Now if you’ll excuse me, I must go put towels in the big American dryer, where they’ll come out soft and fluffy in forty-five minutes.

Nope, never gets old.

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“Because I have kids.”

8 Jul

As I pulled the empty cereal bar box out of my refrigerator this morning while getting milk for my coffee, I realized that there are just some questions I’ve stopped asking because I already know the answer – “Because I have kids.”

Things I’ve stopped asking -

“What happened to all the food I just bought?”

“Why is there a hunk of tree limb in your bed?”

“Why is my floor/counter/seat/self sticky?”

“Why is the freezer door wide open?”

“Why is the tiny dog wearing a Build-a-Bear tutu?”

“Why can I respond to any life situation with a SpongeBob quote?”

“Why do I cherish the locks on my bathroom doors so much?”

“Why do I smell poop?”

“Why do my headphones keep disappearing?”

“Why is there water dripping from the ceiling?”

“Why are there crumbs on the bottom of my purse?”

“Why are there clementines stashed all over the house?”

“Why does the school keep calling me?”

“Why can’t I have a fun little car?”

“Why does my back/shoulder/elbow hurt?”

“Why am I so tired?”

“Why am I watching cartoons at 3 a.m.?”

“Why do I have Poison Control’s number memorized, and why do they have a file with my name on it?”

“Why did I stop wearing white/skirts?”

“Why is there glitter in my microwave?”

“Why are there shoe prints on the ceiling?”

Okay, that last one was actually something my mom had to ask.  The answer was…because she had kids.  (And the mystery was solved the day she caught my brother laying on his bed and kicking his shoes straight off…onto the ceiling.)

You can almost hear her whispering "Help me!"

You can almost hear her whispering “Help me!”

 

Why my daughter may never receive a diagnosis

7 Jul

This topic came up among friends last week, when I was chatting with them about how we’re starting the med-weaning process – the fact that Maura may never receive a diagnosis.

“But why not?” people have asked me over time.

For those new to the game here, the answer isn’t because of lack of trying on our part.  We have run tests.  So many tests.  Gene tests, metabolic tests, the more generic tests and the more specific tests. Whatever you test with blood and urine, we’ve tried to do.  She’s seen a neurologist, geneticist, pediatric psychologist, neurogeneticist, more neurologists.  Her MRI has been reviewed several times.  Her features have been noted time and again, and I’ve filled out more developmental questionnaires than what’s probably good for my psyche.

Where we’ve drawn the line is more invasive procedures, like the muscle biopsy.  That will only happen if we have good reason to do it.

“But how come they can’t find anything?”

My standard answer has been that they’re doctors, not God.  They are human beings with only so much knowledge.

Lately however, another fact is coming into play – some just aren’t that interested.

See, what Maura has isn’t medically “sexy”.  She is a happy, relatively healthy girl with no regression but some disabilities.  Nothing is life threatening, nothing is impeding her ability to live a decent life.  She’s not teetering on the brink of a medical crisis, nor has she lost abilities she once had.

More importantly though – she’s one girl.  She’s just one child.  She’s not 1 in 88 or even 1 in 10,000.  She’s just one.

There’s no funding for medical research to find out what makes one child tick.

We’ve known this for years, ever since my husband asked our first neurologist if Maura had something.  I can still remember his response -an emphatic “Oh, she definitely has something…” followed by “…but you may never know what that something is.”.   He then explained how medical research isn’t interested in cases like Maura’s.

It’s not sexy.

It’s not funded.

It’s just not interesting.

Not to those in the medical profession at least.

I’ve had to be comfortable with the fact that Maura will most likely never receive a diagnosis.  I had to come to terms with that years ago, along with so many other things about Maura.  For all her cognitive disabilities, she’s too healthy, too happy, too social, and therefore, we fall through all the cracks, from medical ones to caregiving ones.

I know we’re not alone in this – but it creates a bubble around us, that makes us feel alone.  There is no national group lobbying for better health care for children like Maura, for insurance coverage and therapies.  There is no local group I can call for support and a list of doctors that treat her condition.  No web site run by parents to give me a clue as to what Maura may go through medically come puberty and adulthood.

And that’s just how it is.

There’s a certain degree of acceptance to it all.  Because you have to accept this or go mad. You accept that you’ll never know, that even if  you did come up with something, it’s probably so rare that you still have no answers.

But every so often, I’m reminded that I do want that interested doctor for Maura.  The one who’ll try to figure out that mystery instead of just treating the symptoms.  I’m afraid, as she gets older, those doctors are going to be almost as rare as a diagnosis for her.

 

Maura, waiting for the school bus 2012

 

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