Diary

via Daily Prompt: Record

Keeper of secrets but teller of lies. My diary is a safe place, where I can spell it all out, yell it all out, and come back around the calm side. But it’s not real. It’s only my perspective, with no pretense of balance, fairness or self-control. It’s joy, and gratitude, and wonder that I get to live this life, my life. It’s hope for the future, and making sense of everything that got me to where I am. But it’s still just me, writing for me.

Yet it’s also the record of my family and friends. No one else I know keeps a diary. I keep our memories, our events, our lives, imperfect a record as it may be. I’m sure that some day my kids will read them and wonder if they grew up in the family I’ve described. They’ll wonder why I wrote about some things and ignored others. They’ll wonder how I managed to see things the way I do, when they don’t remember it that way at all!

Oddly enough, I write for them as much as for me, because I know that some day they’ll inherit these volumes and volumes of my life. And they’ll be left to make sense of the records I’ve created. They’ll laugh at my quirks, and maybe they’ll feel puzzled, or sad, or melancholic, or maybe even happy that they have the memories, written, made real out of thoughts, the words on the page recording their lives for them.

Daily Prompt: Pattern: Snowflakes

via Daily Prompt: Pattern

Since we’ve been riding this rollercoaster called MDD (Major Depressive Disorder, or, as I call it, Many Dismal Days), I see patterns in behaviour, patterns in triggers, and even patterns in communication.

Parent-blamers would call her a “snowflake,” which they mean to be a delicate type who can’t withstand the pressures of daily life. The implication of the word “snowflake” is negative. Its cause is assumed to be that parents, by not letting their children fail at things, have created patterns of weakness in their children, where they fall apart at the slightest provocation because their parents have traditionally done everything for them.

The reality is far more complicated, as are real snowflakes. Maybe in some cases, the parental influence is a factor. Maybe in some cases, kids are wired in such a way that things seem more challenging for them. Maybe in some cases they’re actually trying desperately hard to face life’s issues, joys and obstacles, trying really hard to succeed, but for whatever reason the weather changes and they melt.

I think that the human tendency is to insist on patterns in order to make sense. Even if the patterns don’t always fit, we force things (and people) into categories because that’s how we make sense of them. Kids who are struggling, be it because of depression or anxiety or whatever, are difficult for us to figure out, and challenging to treat. We want to relieve their suffering, but because the causes of these mood disorders are often elusive, we find easy targets (parents, or even the kids themselves) and impose a structure that may not always fit.

Thus we label these kids “snowflakes” because it makes us feel better to have someone to blame. We see patterns in their behaviour and reduce them to the lowest common denominator.

We forget, though, that snowflakes are beautiful, unique, intricate and complicated. Snowflakes are forces of nature, with immense power in their beauty. They sparkle like diamonds in the sunlight, and they have the strength to bend tree branches under their weight, or even crash down a mountainside in a ferocious, roaring avalanche.

Let’s take some time to reflect on the labels we use, and the patterns we impose. Let’s remember that the people we categorize are exactly that: people. With individual thought processes, unique ways of processing information, diverse ways of making it through life’s challenges and joys.

Let’s remember that even snowflakes can be strong.

A Few of My Favourite Things

Just because sometimes you feel like celebrating a day full of regular things that aren’t drama, no angst — teenage, parental, existential or otherwise, a day of sunshine, curled up with the cat (or dog), a day off work!

So here is my shout-out to regular great stuff.

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Chai tea. I love it! You can make the tea part as strong as you like, and you add all kinds of spices in all sorts of combinations. The flavours are intricate and bold, and you add hot milk and honey. Chai says, “I value you, and I care enough to make it just so.”

Sunshine! It can be underrated, or at least taken for granted. Even on a cold day, it can warm you through your window, and remind you that if it isn’t already, spring is really a thing.

Books. I love fiction, non-fiction, science and art. (Really, science and art are different points on the spectrum of beauty.) I can start one, become engrossed, and finish it by tomorrow. Or, I can choose to put it down and find something else. I can read kids’ books, biology or a study of Emily Carr. With pictures!

Fireplaces. YES! Because when it’s cold out, or even just slightly chilly, there’s something about a fireplace that has “comfort” all over it.

Coffee! Because, it’s, like, the elixir of life. Strong, dark, deep and rich.

Chocolate! Cake, bars, cookies, drinks. Chocolate says that life can be complex and sweet, bitter, solid, malleable and so worth it.

Animals. My dog doesn’t care if I don’t feel like it, and doesn’t judge me when little things make me anxious. My cat doesn’t mind if I don’t get home from work on time, and certainly doesn’t care if I can’t manage more than cereal for dinner. Plus, they give me an excuse to talk to myself, and get me out of the house every day for exercise.

Music. Classical, classic, pop, rock, rap, jazz, blues — whatever moves your soul, it’s the soundtrack, it’s the memory. Music helps us frame our lives and tells us that someone else out there gets it.

Snow. Yes, even snow. You can ski on it, run in it, build with it, move it out of the way. And it’s always there to remind you that it won’t last all year. Plus, it makes all the other things that much more meaningful.

 

You Must Be Joking.

If a “neurotypical,” (?) non-depressed, non-anxious, non-idiosyncratic (???) person were ever to be described in some of the ways I see autistic people described, I’m betting that “ableist” language would pretty quickly become a thing of the past.

(Note: ** I use quotation marks around words that I find objectionable or else don’t have the knowledge and experience to find other words for.)

Consider this one website that claims to “describe” Asperger’s teens. Language such as, “clueless,” about social cues. “Overly logical and rigid.” “Abnormal and intense interest.” “Lack of appropriate social and emotional responses.”

And this is supposedly a “friendly” site.

What the hell?

Or, consider a book I picked up this morning, about anxiety and Asperger’s. The author says he is an Aspie. Yet even in the first chapter I ran into example after example of his portrayal of Asperger’s in a negative stereotypical way. He also insists that life in general is going to be harder for Asperger’s people, and that they just need to be brave and get through it.

How inspiring.

And so, when I’m looking for possible diagnoses for my daughter, I’m sort of wondering if I even should. Is this what she’s up against? What if her diagnosis is bipolar, or borderline personality disorder, or schizophrenic, or something even more reviled by the mainstream?

From what I can tell in my early research, and IF my daughter falls into that spectrum of brain wiring, what I know of her to be true is that Aspie people are creative, intense, generous, loyal, sensitive and highly attuned to their environments. She’s far from “clueless,” about social cues. She may not always interact with people in ways that others might expect, but rather than clueless, she is extremely clued in, and figuring it out with a lot more care and thought than your “average” person.

One site even claims that Aspie boys, because they don’t get the whole dating scene, become obsessed with masturbation. Girls prefer to wear the same hairstyles and clothing they wore in grade school, well into the teen years. Both boys and girls neglect their hygiene.

Part of me is right disgusted that this stuff is even printed. Part of me wants to laugh. Seriously?

My daughter doesn’t fit this stuff.

But you know what? While I think that yes, there may be a very wide range of behaviours, interests and manifestations, it’s the overwhelming focus on the negative that bothers me, as if the only way a kid can be diagnosed is if they fall into these apparent extremes. And if they don’t exhibit negative extremes, what then?

And really, who writes this stuff??

Oh yeah. It’s the “well-meaning” professionals who want to make it “easier” for parents to “manage” their child’s “symptoms.”

My child does not need to be managed, thankyouverymuch. She doesn’t have symptoms of a disease, unless you count anxiety and depression, which are literally DIS-ease, as in not at peace with herself. She has a personality that is varied and intricate. I don’t need it to be easier for ME.

I asked my daughter recently how she would feel if she did find a diagnosis that makes sense to her. Would she feel labelled? Would she feel like she’s being categorized, or would it increase her anxiety? She told me that more than anything, she just wants to know that there’s a reason why she feels the way she does.

But if she were to come across sites and writing like I’ve described above, I fear it would set her back to be described as rigid, clueless and obsessed.

I think this is going to take some time to figure out.

Thankfully, it’s not all like this. Am I naive? Absolutely. Optimistic? Eternally. (See my earlier post about the case for optimism.) Oh there are people who struggle with having been diagnosed with something that isn’t a mainstream brain wiring. I think that anyone who receives a diagnosis must have some processing to do, coming to terms with whatever it is that has caused the diagnosis to be made.

But isn’t it easier to deal with things when you know what you’re facing?

If my daughter has a bipolar disorder, then we need to treat it so that she can live with more peace and more fully than if it’s not treated. If really she is perfectly neurotypical, and her anxiety and depression are just things unto themselves (“just,” she says. Ha.), then isn’t it better to know so we can confront them and help her feel better? She wants so much to get on with the living part of life! Celebrate what makes her who she is, and figure out ways to deal with the negative (anxiety and depression).

Easy, right?

 

Sister Sister

With so much attention on the child who is anxious and depressed, other siblings can miss out, I think. Despite parents’ best intentions, and even with extreme effort, non-depressed siblings sometimes don’t get all the enthusiasm, attention, or engagement that they might otherwise.

I know parents try. We do our utmost to make sure that youngest gets the time and attention she needs. Parents often go to extreme lengths to ensure that siblings don’t feel deprived, left out, or otherwise shorted. But I also know that sometimes it just isn’t possible to make it perfect.

Not only does that add to my feelings of guilt and worry, it can sometimes make youngest feel resentful. On the other hand, I think that sometimes, being the sibling of a depressed teenager forces kids to grow up in ways that they otherwise might delay. That isn’t always a negative.

Siblings take on a huge chunk of the care for depressed and anxious children. Huge. Often without being asked, siblings will sometimes do extra chores, help their depressed siblings with daily tasks like making lunches, and sometimes most helpful of all, will simply stay out of trouble. That’s monumental. As well, I’ve noticed that youngest child has developed a fairly strong sense of responsibility. She can (and does) take on caregiving tasks, making sure she gets to where she needs to be ready and on time, and really helps the family to function more smoothly. These are all really good things.

But what about the little things they miss out on? When the Drama-of-the-Day is all about oldest daughter, and when some days my heart is in my knees because I worry about what oldest is doing, feeling, thinking, about to do, has done, etc., sometimes it’s all I can do to ask youngest how her day was.

I’m not going to get into fair / not fair — life isn’t “fair.” It’s up to parents to make sure we’re doing the best we can for our kids, and even if it isn’t “equal” all the time, I know that in general, parents are likely doing all they can.

But other siblings must miss out, and that makes me sad.

Our youngest does feel taken advantage of at times, and often simply refuses to ever do another thing ever in the world for her sister, and for that, I applaud her. She stands up for herself. She gets pushed around (figuratively) when oldest is frequently rude or ungrateful or demanding. She pushes back, and that makes both of them better people, frankly.

But for every morning that sees disruption because oldest can’t find the one shirt she just has to wear, and for every morning where oldest threatens to skip school because she doesn’t have time to make her lunch, or for every time that we worry that oldest is going to hurt herself, youngest is there in some way, simply not making it worse, and often stepping in to ease the pressure.

I just sometimes feel like that’s not right.

At the same time, I am so, so grateful.

There is SO much in those two lines, it could take me weeks to lay it all out. Suffice to say, I feel a lot of guilt that her mornings often start with upheaval. I feel a lot of guilt that even if she gets the praise, recognition, enthusiasm and attention she needs and deserves, sometimes there’s a shadow of worry on my mind that means I’m not 100% focused. I feel a lot of guilt that sometimes she will see me in tears, either because I’m worried, or angry, or just plain tired.

I wish I could give both of my kids the perfect childhoods, whatever that may be.

This morning I read a brief news article called, “Disruptive Children Do Not Inspire Similar Behaviour in Their Siblings.” It was all about how often, non-“disruptive” siblings learn “how not to behave.” At the very end, was the line, “The researchers are currently examining the role of siblings in the development of childhood depression and anxiety.”

First of all, they didn’t define “disruptive,” so that could mean anything from talking excessively in class to drug abuse. And I have a problem with the assumptions that are loaded into the term “behaviour” when applied to the non-defined term of “disruptive.” Because I know for a fact that when oldest is rude, or gets angry with us when she feels we don’t understand her, or when she’s simply trying to make herself feel better — yeah, that can be disruptive to the rest of us, but it’s not … it’s not … she’s not doing it to purposely upset us. She’s not doing it because she wants to hurt us, and she’s not purposely manipulative. So technically she could be said to be “misbehaving,” and as I’ve said, youngest often works hard to smooth it out, however she can.

All that aside, though, I’m most interested in that last line. Siblings really do take on a whole lot for kids who are anxious and / or depressed. It may not be enough to “study” those roles. Somehow they deserve more, only I don’t know what “more” is, and I, as a parent, just don’t know how to make it so. That, too, makes me sad.

 

Well, then.

Ok, so 15 months later, we have progress, we have stability in instability, we have … hope?

It’s been a year of major change, 5 on the Richter scale (okay, maybe a 4). But through it all, still no answers. No obvious reasons for daughter’s continued depression, anxiety, and self-harm. Despite a complete change in environment, support sytems strengthened, and now medication, we still haven’t had any answers beyond “anxiety and depression.”

But that can’t be all. It rings hollow. It rings hollow for me, and for her. It feels unsatisfactory, as though something’s missing. I *get* that millions of people are anxious and depressed for no specific reason. But for her, it just hasn’t felt like that’s it. She doesn’t think so either.

So she’s started looking for answers beyond the obvious. *Why* is she so anxious? *Why* is she so depressed?

After a little bit of back and forth with her questions last week, something … clicked.

Asperger’s.

It makes so much sense. It frames every experience we’ve ever had with her, since infancy.

From what I’ve read, Asperger’s manifests differently in girls than in boys, and going by male diagnostic criteria doesn’t get girls very far. So I began looking. That’s what I do, after all. Searching for answers, looking for information, asking questions.

I mentioned the possibility to her and not only did she agree that it could be a possibility, she began to do her own searching, and came up with other reasons why this could be a thing.

Now I’m going to get myself in trouble, because I don’t know the terms that people use, and apparently Asperger’s isn’t even considered its own diagnosis anymore, and somehow we still need to work within these parameters that give you a set of criteria, and you either fit it or you don’t. And some people say that *everyone* has these types of brain functions to some degree or other.

My rebuttal to that is that not everyone has the collection of functions that make Asperger’s kids unique. Not everyone has the whole set (or even most of the set).

I digress.

And then I came across one particular website that outlined some things to look for in preschool girls. I nearly cried. That was her. As an infant / toddler / preschooler. That was her. I felt like I’d been hit over the head with it. I nearly cried because for the first time EVER, it made sense. When doctors couldn’t tell me why she cried all the time, and didn’t sleep till she was 3. Why she likes to walk alone at night. Why she simply cannot find the words to describe how she feels, how emotions and talking about emotions are just not in her vocabulary, and they overwhelm her. And why she had such severe separation anxiety. And why transitions have always caused her distress. Not just, “oh darn, I have to go do something else now.” Downright distress. And why forgotten headphones can start a day off alarmingly poorly. And why I’ve always had to say to her, “You’re not the parent. Your sister doesn’t ‘obey’ you because you’re not the parent.” Why she’s always helping classmates with their schoolwork even though she’ll have to do her own homework later to catch up. Why I can’t say, “Ok, we’re leaving in 5 minutes,” because if she’s not ready it provokes tears and worry. Why her smile is … put on. Like she’ll look at me and for a split second she is visibly putting on her smile. Blink and you miss that. But it’s there. Why numbers “make sense” to her in a way that interpretive subjects don’t. Why jeans were a foreign article of clothing until high school. Why she melts down nearly every day after school. Why she’s always felt like she doesn’t quite fit. Why she moves in a way that seems almost mechanical, stiff, as though it doesn’t quite come naturally to her. Why she can be so honest at times, so much so that it continues to surprise me. Why she can invite a friend over, but then sit in a corner on her phone, ignoring the friend, because she just doesn’t quite feel right. Like she really wants to be with people, but the reality of doing that is overwhelming. How I could never keep her in books.  How favourite music isn’t just favourite music. It’s everything. How she will persevere through the most remarkable odds, and how *I* am overwhelmed by her bravery, her perseverence, her generosity, how she’ll be the only one in the family to notice when I get new glasses or a hair cut. How she would give her time and knowledge again and again, and how she *always* sees the best in people, always without fail sees things in people that most others miss, and will defend those people even when many others wouldn’t. (I don’t know if that’s an Asperger’s trait, but I don’t know of too many people who have that in them.)

No, none of this is a diagnosis. And apparently it’s *ridiculously* hard to get a diagnosis.

But for her, we will figure this out. If it means that she can begin to make peace with herself, if it means that she can begin to see where she fits in the world, and know that there’s nothing wrong with her, and if it means that my parenting can work with her brain, well, that’s we’ll do.

And if it’s something else, if it’s really *not* Asperger’s, well, we’ll figure that out too. We will figure it out. We’re still looking.

The Case for Optimism

I think optimism gets a bad rap sometimes. Optimists are said to be blind, naive, pollyannas who don’t see things as they are.

For me, optimism is hope. The two are intertwined. I don’t engage in optimism all the time. Sometimes it feels naive. Sometimes it just feels like too much damn work. Really, there’s nothing easy about optimism. To be really optimistic, you have to accept that there are things going on that suck big, and still believe that everything will be okay. That takes a lot of guts. Sometimes it’s easier to wallow in your coffee.

(At least there’s coffee!)

My point is that if it’s a process, then after the wallowing, optimism can be a woolly blanket on a cold day. The wallowing, grieving, and general lousiness are necessary in order to work through the things that suck, take a stand, take action, take charge (take something!) and keep going. Even getting up and getting through the day is optimistic. It proves that somewhere inside, you feel that there’s a point.

I read an article yesterday about one author’s experience with depression while doing her Ph.D. She said that the more she tried to just get through and deal with it herself (by not dealing with it), the more she would beat herself up when she didn’t succeed in solving it. She finally realized that getting help was more efficient and made her feel better and she should have done it ages ago.

That was really powerful! Would you try to heal a cavity by powering through? Would you trade in your glasses for positive thinking?

No. You go to the dentist. You see the eye doctor.

My daughter has been “powering through,” for a long time. She’s very hard on herself and thinks she should be able to just deal. She doesn’t want help. Help is for “freaks” (her words). But it’s getting harder and harder, and she feels more and more chaotic when her efforts aren’t rewarding her with glowing mental health. She can’t make decisions, and beats herself up for any course of action because it’s not ideal. We’ve had the conversations where I’ve suggested, as I said, that counsellors help with brains the way that coaches help with sports, dentists help with teeth, etc. She’s resisted.

I don’t know what the switch was, but now she’s agreed to try again. She will see a counsellor.

This is huge!! This has me wanting to shout from the rooftops!

Of course, I’m filled with apprehension. What if it doesn’t help? What if it gets better and then comes back again? What if? What if she doesn’t click with the person we choose, and then refuses to go to anyone ever again?

On some level, she must feel some measure of optimism that she can feel better. I know I do.

One Step Behind

I wish I could fix it. I wish SHE could fix it.

I wish I could get inside her mind and rearrange it. If I could only pop in for a minute and plant some joy, maybe throw in some self-confidence and contentment. If I could toss around some happiness, that would be great, too. I would also plant the seed of knowing that anger passes, that hurt feelings can be temporary. I’d plant another seed, too: the seed of resilience, so that she would let the hundred good things overshadow the one downer.

I wish I could for once and for all just understand. She doesn’t need me to fix it. She doesn’t need me to take control and make it all better. Nor does she need my advice, sappy happy platitudes, frustration, or attempts at distraction. She doesn’t need the Facebook inboxed links to the self-help articles. She doesn’t need my wishes, either. She doesn’t need me to make it about me, and how I feel about her illness.

She needs me to hold her hand, sometimes. She needs quiet acceptance. Sometimes she needs spoken acceptance, me telling her that I like her as much as I love her. She needs to know, with my words and my actions, that I have her back no matter what, that even if I do get frustrated, if she needs me, I’m here. She needs me to put aside those frustrations. She needs me to keep pushing her to do and be better, because that shows her that I have faith in her and her ability to be well. She needs me to respect her privacy, but also be alert and aware in case it’s going sideways on her. She needs me to let her be a regular teen with regular teen issues.

Far too often, I think she’s having a good day, only to find out that something, somewhere, has made it disastrous for her. I feel like I’m always a step behind, and that if only I was keeping up, I’d be able to prevent the spiral. I can’t. I can’t keep up, AND I can’t prevent it. So how do I give her what she needs, if I feel like I’m always just trying to catch up?

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Being unable to keep up makes me feel like I can’t keep her from sinking.

I once had a dream that our family was on a ferry. We weren’t even too far from shore when an earthquake struck, and within minutes, a tsunami. My husband had our younger daughter safe, and I grabbed our older daughter by the hand. The wave, this massive, crushing wave, washed over us. She yelled at me to follow her, hang on tight! follow her and go down, try to save ourselves by going underneath where it wasn’t as turbulent. We tried. Oh, how we tried. But she slipped out of my hands, and I lost her.

Seriously, some days I feel like I’m losing her. On the surface she’s “fine.” But … but. There’s always that but. Always I can hear the rumbling off in the distance, the earthquake imminent. She’s walking around it, sometimes towards it, sometimes away from it. She chooses to walk alone, and doesn’t want my hand. I offer it anyway. I keep hoping that she’ll take it one day, before it’s too late.

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Still Waiting To Exhale

Remember that movie? The one where the women go through romantic partners, all of them searching for the moment when they can stop searching.

Although it’s not a romantic situation, I’m still waiting to exhale. I think that will be the case for the rest of my life. When you have a child who is depressed, or has some other kind of illness, I think that’s just the new normal. You never relax, not completely. Even when things seem to be going okay, you’re always on guard.

You always listen for the noises in the night, be they the sounds of sobbing, or the movements that tell you she’s not sleeping. You’re always checking for cuts and scratches (overtly or covertly). Folded up pieces of paper on a bedroom floor are potential life-changers. Music is never just music. You’re always wondering if this time she steps out the door will be the last.

You learn not to let those thoughts rule your world, though. Sometimes. You learn to celebrate everything, and not take anything for granted; if there’s one up-side to having a depressed child, it’s definitely gratitude and a new appreciation for stability.

A year ago we were in such a dark place, and every day was an exercise in fresh fear (mine) and new lows (hers).

How far we’ve come in that year! There have been times where things are actually good. She’s worked hard to fight and be well.

There have also been lots of lows, where old habits creep back in, and vanquished demons try new disguises. She still won’t go for therapy, though it seemed to help last year. She’s still cutting, but trying not to. She says she doesn’t belong, but she’s working on finding ways. She still can’t talk and open up, but she can sometimes cry in front of me, and that’s huge.

I keep working on me, too. Trying to be a better parent, trying to be the parent she needs. Sometimes, though, I find myself wearing down. It’s not the absolute exhaustion of a year ago. It’s the steady erosion of comfort, the constant underlying tiredness. It’s not debilitating. Exercise, good nutrition, rest and writing are all helpful.

Sometimes, though, I have so much to write about, and can’t. Sometimes the chocolate wins, and sometimes I wake up at 3:00 a.m. and that’s just it for sleep.

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Always, always, I’m afraid. Even when things seem okay. Because the stats are frightening. Depression, especially if it occurs young, will likely return. December babies are 30% more likely to die by suicide than the kids who are older in their peer groups. (That’s a weird one, but chilling, pardon the pun.) Untreated depression is far more lethal than it is when it’s treated. (If she’s trying to be well but won’t go for counselling, does that count as untreated?)

She seems okay these days, and for that I am so grateful! The fake laughter still outdoes the real, and there are still lots of times when I know she’s struggling to keep it together. But she’s had some good times, and she has things to look forward to, and she’s pushing through. Every single day I am thankful for her, and every single day I’m in awe of her strength. There’s no handbook for loving a child who is depressed, but I’m doing my best to learn.

Friends who don’t have depressed children don’t get it, but they try, and that makes me grateful, too. They question my parenting, and not-so-secretly wonder why I hover, why letting her make her own mistakes has a much higher price than for another child. Truly, a failing grade isn’t just a life lesson for a depressed child. Sometimes it’s life. They don’t get that.

Despite that, I try not to hover too intensely, and try to let her experience small failures so that she knows she can. Because the life lessons mean so much more, the small failures and the big ones are lessons that can carry her through, but only if she remembers that during the hard times. Then, the lesson of the experience is forgotten in the list of yet another bad experience.

I love her with an ache that hurts my soul. I’m proud of her beyond measure, and frustrated with her behaviour to the point of wanting to scream, sometimes. She’s wiser than I’ll ever be, and more compassionate than anyone else I know. She doesn’t judge people. She’s generous and has a heart that feels so much that sometimes it can’t bear to be touched. She’s my baby and I don’t know where I’d be without her.

Thank God, Allah, goodness, the spirits and all the good beings combined that I haven’t had to find out.

So, for now, things are okay. I’m still waiting to exhale. All things considered, it could be worse, and I’ll take it gladly.