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Category Archives: Heart Softeners

The only kind of counterstrike I play

One of the ways that Shaitaan tries to bring me down is to get me to use the internet for wandering into distraction versus addressing any cause of my stress, or Shaitaan-Forbid- actually making dua or something.

So I use his own trick against him and use the internet to bring me closer to Allah.  See, I let him think  I’m getting online to waste time, and I even get so far as opening youtube, but right when he’s looking the other way, PEW PEW PEW! I fire a round of this at him!

Insha’Allah

InshaAllahpoem

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)

 

Left my heart in San Francisco

And my camera in Oman!  Noooooooooooooooo!

Alhamdulillah ála kulli haal.  Praise be to Allah in all circumstances. 🙂

Ok, so I have interesting stories but no pictures, and on top of that, I have a week of office work pending.  So let me take care of some emails before they burn a hole in my inbox, and then I can think about blogging Oman.  In the mean time, crank it up! (voice and percussion only)

And let it down softly…

Bittersweet: A Spiritual Perspective on Special Needs Parenting

Reposted from MuslimMatters.org

I’ve tried several times to begin this article and this is my third attempt. I’m supposed to be writing about special needs parenting from an Islamic/Muslim/Spiritual point of view, and the challenge is finding a balance between the bitter and the sweet. I have had some experience, my son Khalid was born with autism, a neurological disorder with complex genetic causes and no known cure. He woke up crying every two hours from the day he was born until he was almost three. He learned how to talk just last year and he occasionally still freaks out if you laugh too loudly in his vicinity. He used to bang his head against windows and walls and cry until he threw up. He’s made wonderful progress, Alhamdulillah, but at the end of the day, he still has autism, and we still have our daily challenges.

It’s hard to understand autism from the outside, and to be fair, no two people are affected in the same way. On the severe end of the scale, there’s our friend Dan, who does not talk, cannot walk properly and was in diapers until 13. His parents put him in leather gloves to prevent him from biting his hands to the bone when he is frustrated. On the other end of the spectrum is our friend Zaina, who has Asperger’s Syndrome, which is a form of autism that Hollywood likes – she’s extremely intelligent, is physically normal, but so socially impaired that she barely talks, cannot make eye contact, and cannot even begin to understand the complexities of interacting with other people. My son Khalid is somewhere in the middle. He has his funny quirks, but he can pass for physically normal unless he’s spinning in circles or flapping his hands. He’s no genius, and his mental age may be behind his physical age, but he’s slowly learned his ABC’s and even attempts to play with other children. Alhamdulillah, his autism is moderate.

IMG_2893In the two years since his diagnosis, I’ve learned more about patience and trust in Allah than I had in my entire life before that, and having a child with autism has been a blessing that I cannot imagine living without. I’m sure there’s more to learn still, but I know that once upon a time, I thought waiting for an hour was a long wait. Until a few months ago, putting Khalid to bed took an average of an hour and a half every night – sometimes less, often more. I would sit next to him, or lie down next to him, and wait for the screaming, bouncing, kicking, pinching and crying to fade into silence. And I had to sit quietly, and not move or talk, and do my best to imitate some sort of maternal rock as the storm of Khalid battered against it.

I didn’t do a very good job at first, I would yell at him to lay down, and he would become scared and cry. So I would yell more, and he would scream, and I would yell more, and it would escalate until he would be shaking with fear and I with rage and at some point it occurred to me that my own son was genuinely terrified and couldn’t understand why he was being yelled out. And then, Allah gave me sabr, and then a diagnosis, and then the understanding that Khalid wasn’t disobeying, he just had no idea what was going on.

Even today, when Khalid is having a weird night and half an hour turns into an hour and a half, I just sit in the dark and do dhikr, or plan the next day, or think, and if he’s still not tired after about two hours, we just get up and go play for a bit. I’ll have a glass of water and maybe even a cookie. Khalid will get on the computer (yes, he uses the computer) and play games for as long as is takes for him to start looking tired, after which we’ll go back to bed again. And I’ll sit next to him in the dark, and he’ll roll around and count his toes, or sing quietly to himself, and occasionally he’ll sit up to make sure I’m still there, but eventually he will doze off and I can finally get to bed, sometimes three or four hours after we “went to bed.” And before you accuse me of being exceptional, Aal’s mother spends three hours just feeding him, three times a day. And he still hits himself.

Yes, I have a lot of stories. We autism moms tend to gravitate towards one another, not because we have a manifesto or a secret handshake, but because at the end of the day when your child took off their dirty diaper in the mall and got lost in the parking lot and wouldn’t eat their lunch because some of the carrots were too orange, no one else will understand you except for another autism mom.

Another mother, Noura, called me a few weeks ago, and she had that quiver in her voice that we all get from time to time when we need to break down a bit so that we can put ourselves back together. She had been trying to get her daughter into a school, and no school would take her. She had been trying to get her daughter into a swimming class, but when she went for her first trial, the instructor refused to accept a child with “such behaviors.” Noura had been running desperately from one place to another to get her daughter accepted into social and educational programs of any sort, because her daughter will be turning eight and has never been to school. She told me these things crying over the phone, frustrated and burnt out and just needing to hear something to keep her going. “I just don’t know,” she kept saying, “I don’t know what else I can do.”

I didn’t know what else she could do either, except for what I do, which is to ask Allah for help. We have been told that a child’s Jannah is beneath his or her mother’s feet, but in some cases, a mother’s Jannah may be beneath the feet of her special needs child. And perhaps the father’s too, Allahu Aalim. The tables get turned on both parents, and those who were relying on their grown children for care in their old age are instead preparing to care for grown children who cannot feed, bathe, or even clothe themselves. Instead of looking forward to retirement, parents dread the time when they can no longer earn an income to support their children.

If you want to see an adult cry, ask a father or mother what will happen to their special needs daughter or son after they die. If you could see inside of their head, you would see an exploding matrix of questions, fears, worries, and desperate plans. You would re-read every news story you’ve ever read of neglect or abuse, or even rape, of special needs adults by paid caretakers who take advantage of individuals who do not know how to defend themselves or even speak. You would hear the point and counterpoint of a mind divided between wanting more children who could potentially care for the child, versus not wanting to risk having another child with the same genetically linked condition. You would see mental excel sheets tallying savings and money spent on current treatments versus saved for future life-long care, and money not saved for the education of the other children, and you would see a lot of figures in red. Special needs parenting is expensive. And scary. But here’s something unexpected – it’s also beautiful, and humbling, and when undertaken with trust in Allah and faith in His decisions, it is the catalyst for spiritual evolution.

Recognizing that our special-needs children are a trial as well as an opportunity to earn blessings, we are able to change the stories we tell ourselves. When we look at our children, and Shaitaan whispers “Why you? Why your child? How could God do this to you? It’s not fair,” we can bravely answer back. Allah chose me for this because He knew I could handle it, and He never gives anyone more than they can bear. I am not Khalid’s Rabb, Allah is, and when I die, He will look after Khalid with a love seventy times greater than my own. I can only save so much money and teach his sister to look out for him only so much. Khalid’s care is with Allah. His rizq is with his Lord. And he may never learn how to work and he may never get married or hold a job, and he may die alone, or he may die before I do, but he will be raised as an innocent – one who will be exempt from the fear of judgment because he never knew what sin was. If he never had a job, then he will never be asked about his wealth. If he never speaks, he will not be asked about lying. And these things are terrifying for me to think of, to type even, but I know that Allah has given my son autism for a reason, and all of Allah’s reasons are good reasons.

The Messenger of Allah (sallallahu `alayhi wa sallam) said,

“The greatest reward comes with the greatest trial. When Allaah loves a people He tests them. Whoever accepts that wins His pleasure but whoever is discontent with that earns His wrath.” Narrated by al-Tirmidhi (2396) and Ibn Maajah (4031); classed as hasan by al-Albaani in Saheeh al-Tirmidhi.

“How wonderful is the affair of the believer, for his affairs are all good, and this applies to no one but the believer. If something good happens to him, he is thankful for it and that is good for him. If something bad happens to him, he bears it with patience and that is good for him.” (Narrated by Muslim, 2999).

Sometimes, when I look at Khalid I wonder what life would be like if he were ‘normal.’ He has the most enormous, beautiful brown eyes. He skin is a light olive, he has silky dark hair and a smile that could melt the polar ice caps. Perhaps normalcy would be too dangerous for Khalid. Or maybe he would be fine, maybe the autism is for me. I know with absolute certainty that if my son did not have autism, I would not have been a dedicated parent and a desperate Muslim. If I had not been pushed through fear for his future and hardship through the present, I would never have understood what it really meant to pray. My trust in Allah and acknowledgement of his Rububiyya(Lordship) would never have moved beyond the superficial. Can you dread for your child’s future without losing hope in Allah’s mercy? Is your taqwa greater than your fear?

It has taken me some time, but I can finally thank Allah for Khalid’s autism. It may save him from accountability , and it has definitely saved me from living in the unreal world – one where I care more about my child’s postgraduate degree than his iman. And while I have an entire lifetime of challenges to look forward to, I am keeping faith that Allah intends nothing but good for Khalid and I. If that means waiting until the resurrection to see my son as a normal young man, then so be it. Khalid and I will meet again at Al-Kauthar, and sit in Jannah with an eternity of ease to make up for one small lifetime of hardship.

May Allah have mercy on all Muslims, and ease whatever difficulties they are facing, and strengthen their iman and increase them in sabr, and reunite them with their loved ones in the company of the righteous. Ameen.

Drive safely, InshaAllah.

I’ve been in two car accidents in my life, and in both cases, the memory of the impact stayed in my mind for months.  Neither though, have anything on this one-

Note to self- never, ever, ever, ever text and drive.

SubhanAllah.  There are so many things that could go wrong- every car on the road is a potential accident, and yet, Allah protects us from everything except what’s written for us.  Sometimes healthy people die in their sleep with no medical explanation, and sometimes a person who should never have survived does.  Because, actually, he was never supposed to die.  And that other person, the healthy one?  He wasn’t supposed to live.

Your time is written.  Texting or no texting.  But there’s a whole lot of harm you can incur before killing yourself.  And plus, as a mom, my heart ached for the little girl in the back seat who said she wanted her mom and dad to wake up.  Even if she was an actress, because as a parent, any baby crying is like your baby.

So please drive safely.

Take two and call me in the morning

Prophet Muhammad, may the peace and blessings of Allah be upon Him, once said:

“Faith wears out in the heart of anyone of you just as clothes wear out, so ask Allah to renew the faith in your heart.”  [Tabarani]

I think in my case, my faith is a bit more like a pendulum.  It’s always there, Alhamdulillah, but I swing between striving for concentration in my prayers and struggling to not make grocery lists in sajda.  It’s a constant effort to keep my faith on the upswing as well as minimize the back swing.  I find that when I start letting things slip out of laziness- like praying late, praying 1 witr instead of three at night, ignoring Fajr sunnah- then the pendulum starts moving backwards faster, and laziness is replaced with sluggishness, and Astaghfirullah, even a bit of apathy.

I’m being honest, and may Allah forgive me, I’m doing so for the sake of reminding myself.  I know that Allah has said in the Qur’an that sin puts a stain, or a spot of rust upon your heart, but again, in my case, it feels a bit like thin outer coating.    The farther back I let myself swing before intervening, the thicker and thicker the coating becomes, until the prayers on my own lips barely reach my own ears, let alone penetrate my heart.  The gentle reminders bounce off like they’re hitting a forcefield, I become short-tempered with the kids, lose patience with HF, and start slipping into self-destructive habits. I stay up late reading junk on the internet, sleep through Fajr without even having brushed my teeth, wake up late and stagger around groggily while Cindy and Joy- the housekeeper and Khalid’s full-time ABA therapist-  are kind enough to feed the kids breakfast because Momma is too stupid-faced to even pour the cereal.

Then, because I’ve started my day late and tired, I’m cranky and unproductive for the rest of the day.  I’m even less attentive in my salah than usual, and mustering the energy to battle for Ihsan is contingent upon me having the desire to try.  Alhamdulillah, I’ve never been so low that I’ve abandoned prayer, but I have gone for months at a time without waking up for more than one fajr in the whole week.  May Allah forgive me and protect me from ever slipping that far back again, because shaitaan takes advantage of the inevitable self-loathing that follows and volunteers such brilliant suggestions as “You’re a lost cause anyway, why bother trying.”

Yeah, I can get pretty low.  And then, amazingly, something drastic always happens.  December of last year I was so low I even stopped setting the alarm for Fajr, and what happened?  I had a miscarriage.  Then I crashed the car.  Then I gave myself, Khalid, HF, and HF’s family food poisoning, and we were all in and out of the hospital for a very, very miserable two days.

I had reached a point in my life where the spray-on apathy covering my heart had gotten so thick it had solidified, crystallized, and began blocking the light out and the darkness in.  So Allah took my heart and smashed it against the floor.  And then again.  And then again.  I lost a baby, I lost my mobility- both the car and the cartilage under my right knee cap,  I was violently sick with my own salmonella poisoning while also waking up with Khalid to be vomitted on five and six times a night by a crying, terrified, exhausted little boy who had no idea what was going on, and what did I get out of the whole experience?  Something absolutely beautiful.

The covering shattered.

Allah used just enough force, and not an ounce more than I could bear, to break apart the encasement on my heart and leave a battered, tenderized, bleeding, but liberated heart laying there for me to pick up and start over with.  So I did.  And the shards were sharp and I have hurt more this year than I have in my entire life, but I have learned more about maintaining my faith  and keeping my heart soft so that Allah doesn’t have to do it for me.

Is it superstitious of me to believe that if Allah will scourge me if I let my faith slip?  Yes, it would be, except that isn’t what I believe.  I believe that Allah is kind, and He gives us chances to rebuild ourselves by knocking us down.   Every hardship is both a challenge and an opportunity, and when I think of all the times that Qadr has backhanded me, it’s been when I needed a good, swift kick in the apathy.  I believe it’s tough love.  And I’m grateful for it.

And now that I’m done typing the world’s longest introduction, here is my actual post:

I can feel it starting to form- the smoky, glassy, film on the outside of my heart that makes my words harsh and my worship empty.  At one point in my life, I would have kept this to myself, but I recognize now that acknowledging it and fighting it is the only way to keep it from solidifying again.  So I actively seek out ways of softening my heart, and I think, for the first time ever, I understand why there is an entire field of Islamic thought and literature devoted to this- Al-Riqaq- usually translated as heart-melting.  I have been slowly building my own collection of heart softeners, which I turn on, open up, or bring out when I realize I need them.  I want to share two of my favorites, but believe it or not, Youtube hasn’t been working for the last three days, which is why this update has been delayed.

I’m hoping this link works for those of you outside of the UAE, and this one too.

Of course, the best heart softener is the Qur’an, but sometimes you need something short, powerful, and visual to get a good whack at that coating.  And do please share any of your own in the comments.  Allah knows I need them.  JazakAllahuKheiran

Broken leg. Broken heart. Same Difference.

One day, a man falls off of his horse and breaks his leg. And the man’s neighbors go, “How terrible that you should have broken your leg! Now you won’t be able to ride your horse or even walk.” And the man only says, “Allah knows best.”

The next day, a conscription officer comes around the village and takes all able-bodied men off to war, leaving the man with the broken leg behind. And the man’s neighbor’s go, “How wonderful that you should have broken your leg! Other men will go off to die, but you will be safe at home with your family.” And the man only says, “Allah knows best.”

It is later learnt that many of the men who went to war are returning victorious and rich with the spoils. And the man’s neighbors go, “How terrible that you should have broken your leg! The soldiers are returning rich and happy, and you have had to sit here convalescing while they earn money and honor.” And the man only says, “Allah knows best.”

As it goes, the man’s army loses the war, and soon the enemy soldiers come to take revenge on those men who fought them and killed their comrades. Many houses in the village are burned and many men taken away, but the man with the broken leg is spared. And his neighbors go, “You are the only able-bodied man left alive in this town, how wonderful that you should have broken your leg!” And the man only says, “Allah knows best.”

And the story goes on and on. The moral is that man hasn’t a clue as to what’s good or bad for him. Allah causes things to happen in our lives, and we become happy or sad depending on whether we think those things are good or bad for us. The truth is, that the only good or bad that can come out of something depends on how we react to it. A man can use the riches that Allah has given him (a good thing?) to purchase haram, to buy power and to oppress the people around him. Or, a man can take his poverty (a bad thing?) to build up his patience, his Iman, and maintain a humble generousness to those even less fortunate than he is.

It is not for us to pronounce the will of Allah as either good or bad, and like the man with the broken leg, I, with my broken engagement have nothing to say except that Allah knows best.