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Monthly Archives: August 2013

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Hey, good news for a change!

Alhamdulillah!!!  I’m going to be publishing my first book!

Given the last ten or so years of my blogging history, you’ll be surprised to hear it isn’t actually full of mortal wounds, kids stories, and personal reflections.  It’s actually a children’s book, and I’m very excited.

The reason why I’m so excited is that the story is part of My Legacy. Yes, I’ve made it a proper noun for emphasis.  For more information, see the new My Legacy tab on the top of the page.  The way I see it, if I am not around to have important conversations with my children later, that doesn’t mean that I can’t script them now.  So I’ve started writing stories for children, specifically, mine. And yours might enjoy them too.

I want to have at least one published story for Khalid, Iman, and Musfira.  Iman’s has been accepted.  Khalid’s was rejected, but the very kind publishers said they’d give it another look-over to see if reviewing it one more time will make it seaworthy.  Musfira’s has been imagined but not yet completed, but hey, well begun is half done!

I’ve asked the publisher if they can actually illustrate the books to look like my kids, because if I’m not there, I want the kids to be able to see themselves still talking to me.  I know, it’s kind of sappy- maybe even melodramatic, but when I think about passing away, the thing that tears at my heart most is not being away from my husband (sorry HF), it’s actually the thought of my children looking for their mother and not being able to find her.  Of Iman seeking a cuddle and finding my empty room.  Of Musfira crying for me and being hurt and confused why I’m not coming for her.  Of Khalid panicking because I’ve disappeared and he can’t understand where I’ve gone.

If you think that’s bad (gee, look who’s crying again) the absolutely, positively worst thing I can think of is my children finding out that I’ve “gone back to Allah,” and then resenting Allah for having stolen their mother.  My worst case scenario is my death pushing my children away from Islam, because as sad as I am to face leaving them in this life, that’s still nothing compared to the thought of any of my children turning away from Allah.  So the stories serve a dual purpose, InshaAllah- of creating memories for my children in case I’m not there to make them, and of teaching my children about Allah in a way that reminds them of me positively (happy stories) versus negative (Allah took momma away).

But, back to being cheerful- Alhamdulillah!  My first story has been accepted and I’m very excited.  I’m fairly sure that if I hadn’t been Not-Dying-Yet, I wouldn’t have had the urgency to overcome my fear of submitting anything to a publisher.  I would be too scared of being rejected to even try.  But I did it, and they said yes.  And now I’m going to do a little happy dance.

I’ll let you know when it’s published, InshaAllah.  In the mean time, check out Greenbird Books, they have lots of really adorable Islamic stories for kids.  And soon, InshaAllah, they’ll have mine too. 🙂

Sweetness.

At nine in the morning, Khalid came and asked if he could borrow my phone.

I told him yes, but he HAD to wake me up at 9:40, because I had a doctor’s appointment to get to. I have bronchitis so I’ve been stealing some extra snoozes in the morning.

Khalid agreed, took my phone, and then left.

What felt like five seconds later, he came back and said, “Momma, wake up! It’s 9:40 am!”

I opened my eyes groggily and said, “Khalid, I don’t think it’s 9:40 yet, can you please check again?”

Khalid studied the wall clock for a moment and said “Oh, sorry- it’s 9:21.”

“Come back in twenty minutes please, Khalid.”

“Okay!” he chirped, and then skipped out of my room.

Ten minutes later I was still awake and figured that staying in bed any longer was pointless, so I got up. I went into the living room to relieve Khalid of alarm clock duty and this is what I saw:

Khalid- stock still, sitting on the sofa, intently staring.

At the clock.

Watching the minute hand.

Waiting for 9:40.

“Khalid! Have you been staring at the clock since nine???’

Khalid turned and blinked a few times, thinking. Then he simply said, “Yes.”

I was so touched, and so shocked, and so humbled by the methodical devotion required to stare at a clock for thirty minutes that I smothered him in kisses. He seemed embarrassed but tolerated my affection briefly, then breaking free to leave and play with his dinosaurs.

SubhanAllah, it’s times like this that make me marvel at how amazing a little person he is, and how grateful I am to Allah for making him that way. Whether it’s because of autism or in spite of it, Allah has blessed us both. AllahuAkbar.

Hello my name is: Not Dying-Yet.

So the funny thing about having unspecified myopathy is that no one says I’m dying, but no one says I’m not either.  Yes, the muscles in my body are atrophying, and yes you need muscles to do things like pump blood and breathe, but because I haven’t developed any serious heart or lung complications yet, we’ll stay on the safe side and just say I’m getting weak-er, but not necessarily dead-er.  Let us call it: not-dying-yet

It can be awkward sometimes, this whole not-dying-yet thing, especially when meeting new people.  I feel like I need to somehow warn them before they emotionally invest enough for this to sadden them. Otherwise this is what happens:

Me: Hello new friend, my name is Abez, and I love you!

New Friend: I love you too! Let’s hang out tomorrow, and next year too!

Me: Sorry, but I’m sort of dying but not really dying because my muscles are dying but my heart and my lungs aren’t yet dying but there’s no guarantee that they won’t at any time so I guess you could say that I’m not dying yet, though I could be but really aren’t we all?

(awkward silence) (pity) (shock) 

Versus:

Me: Hello new friend, my name is Abez and the muscles in my body are dying!

New Friend: Sorry to hear that but pleased to meet you, Abez!

*firm handshakes for all*

I have a good friend (I’m not sure if she has the time to read my blog anymore) who I’ve known for around six years now. When I casually told her I had been diagnosed with myopathy and that there wasn’t much that could be done, she was upset. And later she called me and apologized.  I asked her what she was apologizing for. She said she felt stupid- I was the one who was sick, but she was the one needing to be reassured that everything was going to be ok.

I didn’t think that she needed to apologize at all, because I’ve known for over a year that I’ve had myopathy, and even longer that something wasn’t right with the way my body was working.  I’ve had almost ten years to get my head around being sick, but she got ambushed with incurable, progressive, muscle atrophy one lazy afternoon after tea and cookies.  I should have prepared her better, but I’m not sure how.  A catchy song perhaps?

Hey, I just met you,

And this is crazy!

My arms are dying,

So hold my baby!

Sometimes I’m tempted to tell random strangers I have myopathy.  When I use my disabled parking permit, sometimes people glare at me.  I look fine- slow, but fine.  One lady in the hospital parking lot tried to stare me down last week.  I was in a hurry and didn’t want to confront her in front of Iman, so I avoided eye contact and just moved forward.  But I really do want to tell people who stare that the reason my housekeeper is carrying my toddler is not because I don’t care or don’t love her, it’s because carrying her can make my arms hurt for hours, or I could lose my balance and fall, hurting us both.

The reason why I don’t pop up like a piece of socialite toast and help the hostess in the kitchen at dinners (like I conscientiously used to) is because my body hurts, my legs are weak, and all your guest-size platters of food are too heavy.  The reason why my husband changes diapers and takes kids to the bathroom even at a guest’s house is not because he’s whipped, it’s because he’s an amazing, hands-on, loving father who’s doing his best to keep my pain level to a minimum.

Someone who loves me sent a muscle biopsy to the Mayo Clinic and got me this myopathy shirt!

Well, I guess they do now.  Someone get this on Amazon, Momma needs a new mobility scooter! With racing stripes!

And it is a pain.  It’s a deep down ache, starting from your bones and spreading uniformly throughout your flabby, shaky muscle.  It doesn’t come in waves, it floods and peaks and stagnates for hours, and sometimes all you can do is sleep it off or sit it out.  It makes it hard to be patient, hard to speak gently, and hard to suffer the inconsiderate acts of very considerate people who don’t actually know how much you’re hurting because you haven’t told them your limbs are dying.  Because how are you suppose do even do that when you’ve only just met them? It’s not like they make a t-shirt for that.

So yeah.  It’s weird, dying. But not yet.  Technically we’re all dying, the only difference is that some of us get pop-up reminders about our appointment with God.  I kinda like this new system- my legs hurt, so I make dua.  My arms hurt while making dua, and it makes me make more dua.  I’m praying more, stressing less, budgeting my energy and prioritizing my life.

I once had too many things on my plate, but I’m passing some of those things off to other people and I hope, InshaAllah, that I can leave nothing on it but my family, my children, my faith, and my health.  Also, my crazy attempts to cram as much legacy-building for the shameless pursuit of sadqa-jaariya before I meet Allah.

That’s another funny thing about having unspecified myopathy- I don’t know if I have the time to be subtle about what I’m looking for, so I will put it bluntly:  Read this poem I wrote way back in 2004 after being told (mistakenly) that my pain was Trigeminal Neuralgia. If this blog or this poem makes you grateful to Allah, or strengthens your resolve in current difficulties, or even makes you say a single MashaAllah (for the sake of saying it) I’ve earned a few more blessings.  And I need me some blessings.  So start reading, cuz momma needs a new castle in Jannah.

With racing stripes.

By Abez, The End.

There
There is a nagging gnawing on the inside of my self 
It’s the feeling of my body giving up before its time. 
In the quiet twilight hours between one prayer and another 
Once I prayed for health 
Now I pray for peace. 

There is a writhing moaning in the deepness of my heart 
It’s the devil down within me that wants me to complain. 
But I have built a fortress with the patience of my faith 
And I will shelter there 
However harsh the pain. 

There is a desperate longing in the reach of my embrace 
For life and love and happiness and gentle many years 
But I shall fold my arms around the comfort of my prayer 
And I may often cry 
But never bitter tears. 

(2004)

 

Be careful what you wish for, sweetheart.

Musfira, staring into bedroom mirror: Momma, whez my beeowd?

Me: Your beard? Musfira, you don’t have a beard.

Musfira: Why naht?

Me: You’re a little girl. Beards are for babas.

Musfira: *pouts* I wan sum beeowd!

Me: You can’t have a beard!

Musfira, dramatically wailing and clutching face: I WAN SUM BEEEEEEEOOOOOOOWD!

You can’t make this stuff up, folks.  You just can’t.