Raising a Child With Special Needs, Part II

Raising a child with special needs isn't all bad; it's just that the day-to-day challenges can be so overwhelming I sometimes miss the blessings. One of the most profound "Aha!" moments occurred on the day we took our son to the neurologist (yes, that day... my "eat ice cream and have a pity party" day).

I was sitting in the waiting room, thinking pathetic thoughts about how no parent wants to be sitting where I am sitting right now. Our son was playing with legos in the "kids corner" of the waiting room. Another couple walked in with their young daughter, who was perhaps three years old. She took interest in the legos and began to talk to her parents - in Afrikaans. My son, without missing a beat, introduced himself to her - in Afrikaans - and invited her to play with him. After about ten minutes of play, my son addressed the girl's parents - again in Afrikaans - and told them they have a "very clever daughter".

I sat, observing this scene from the other side of the waiting room. I didn't know why the other family was there or what challenges the little girl faced. I wondered if anyone had ever told those parents how clever their daughter was. And I very nearly cried, because that's when it hit me: my son may be falling apart physically, but when it comes to connecting with people, he's got it down. He can even do it in two languages! At the end of the day, isn't that what life is all about – meeting people where they are, as they are, how they are, and engaging and loving them there?

Sometimes I have to remind myself of what's truly important in life. I also have to admit that sitting in a neurologist's office is a pretty good place to gain some perspective.

 

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What it's Like to Raise a Child With Special Needs

If most parents had to take their child to a neurologist with the fear that something was wrong with their child's brain, they would freak out. For us, it's normal. Twice a year we pack up for a day trip to the hospital where we monitor my son's progress (or lack of progress), assess his cognitive abilities, physical abilities, adjust medication, and bombard the doctor with a list of questions we've been saving up for six months. Most of those questions are never answered.

"We don't know," the doctor always says. "There is so much about the brain that is still a mystery to us. Be thankful for how well he's doing. Count your blessings. Oh, and watch for seizures." That seems to be the line that ends every appointment, our cue to take our questions, concerns and frustrations home with us for another six months.

For 363 days of the year, we plod along, surviving as best we can and sometimes even thriving. For the other 2 days, I am reminded that life is not normal and I don't know if my son will get through the school year, let alone be able to live on his own one day. For those 2 days, I allow myself to feel the feelings I've suppressed the rest of the year because I'm too busy trying to survive each day. I let myself grieve. I hide under the covers. And I eat ice cream for lunch.

My husband often wonders why I'm so emotional on these days. "The appointment went well," he tells me. "Our son is doing okay."

My head knows these things, but my heart is not so rational. The fact that going to the neurologist is a familiar thing means that my son - who is "doing okay" - is not doing great. He will never be on a sports team, win an academic award, or hold a job where higher cognitive skills are required. Other moms brag about their children's achievements. I stopped doing that long ago.

I think it's okay to take off your superhero cape every once in a while (which, let's be honest: the cape is just for looks) and let yourself be human. In fact, I don't think it's just okay; I think it's great. Hide under covers. Cry. Eat ice cream.

Just don't forget to watch for seizures!

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The Beauty of Grey Skies

I don't know what it is about grey skies that I love these days. Maybe because they are so rare here in Pretoria I have learned to appreciate them more. In California, grey skies were the norm for most of winter, but here, the cloud covering is a rare blanket of peace that begs me to slow down, cosy up to all that is really important in life, listen, reflect, and still my soul. I guess even in South Africa, with it's maddeningly inefficient bureaucracy, life can become hectic!

Slow down. Listen to the birds outside the window. Notice the deep greens of the foliage as they sway in uncertain winds. The relentless African sun has hidden itself; come outside and smell the cooled air! Take a long, deep breath. Pause. Just... be.

 

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Paying Respects

On Thursday, we decided to pay our last respects to Nelson Mandela, whose body was lying in state at the Union Buildings here in Pretoria. It wasn't that I particularly wanted to go; it was more a feeling that I would regret not having gone. Also, I wanted our oldest daughter to witness history up close and personal.

We got to one of three authorised "park and rides" which would bus people to the Union Buildings. The queue was quite long. I regretted not having brought sunscreen or an umbrella to protect against the sun, but as the queue was moving fairly quickly, I calculated that we wouldn't be there more than an hour or two.

SEVEN hours later, just as we got to the front of the queue, we were informed that no more busses would be coming that day and we needed to go home. I was a bit disappointed, but more than that - I was hungry, thirsty, and sunburnt to a crisp! My first thought was, "What a waste of a day!" A few hours later (after a good meal and several glasses of water), I had a change of heart.

When you stand in a queue with people for seven hours, you begin to chat with them to pass time. Our conversation began with small talk - what's your name, what do you do for a living, etc. Two hours later we moved onto favourites: what's your favourite colour, food, movie, etc. Four hours later we were holding each other's place in line to go search for food. Five hours later we were all huddled under one umbrella, trying to avoid the hot African sun and laughing about the difference between rural South African customs and the culture in big cities. Six hours later we were sharing our hopes, dreams, fears, regrets and longings. Seven hours later, when they dispersed the crowd, we were fellow travellers on this journey called life, compatriots of South Africa with a new respect and admiration for one another.

Did I get to see Nelson Mandela? No, but I can honestly say it was one of the most enriching days of my life. And maybe - just maybe - that was the best way we could have paid respects to the legacy of Mandela.

 

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A Sensitive Subject

(Today's post is a bit sensitive, dealing with issues of race, division, and my own shortcomings. I mean no disrespect in what I write, and I hope that you will treat this post with respect as well.)

When we first moved to South Africa six years ago, one of the first things I was told was, "As soon as Mandela dies, all of the black South Africans are going to kill the whites. They're just waiting out of respect for Mandela." It was a shocking and terrible rumour. I certainly didn't believe it. Yet I heard it over and over and over again.

I have always prided myself on not giving in to fear, and let's be honest - South Africa is rampant with fear. Fear of crime, the government, personal safety, the future, etc. The newspaper headlines each morning only add fuel to the fire. "Grandma raped and stabbed to death"... "Baby killed by vicious dogs"... "Teenager attacked and disemboweled"... Still, despite the crime statistics and the personal experience of falling victim to crime, I have refused to live my life in fear. Until the other day.

It just so happens that on the morning everyone woke up to the news of Nelson Mandela's passing, we had plans to visit some friends in Soshanguve, a township outside of Pretoria. For the first time in six years, I was afraid. I battled with myself the whole morning and waffled between feelings of justification and guilt. I need to protect my children (justification)... How can I make decisions based upon a stupid rumour (guilt)... Use your common sense. Wait until a day or two has passed (justification)... What would my friends think (guilt)...

We made the decision to drive out to Soshanguve as planned. I'm not going to lie or look like a hero; I was scared. I hate to admit that, but it's true. The thing that pushed me over the edge was not courage or some altruistic sainthood; on the contrary, it was the legacy of Nelson Mandela himself. If I chose to act out of fear, out of suspicion of the "Other", then I would only perpetuate the division and fear that plagues this beautiful nation. But to give people the benefit of the doubt, to reach out when there is risk (real or perceived), to see each person as a fellow traveller on the journey of life, is to strive for the reconciliation and unity for which Nelson Mandela fought. More importantly than that, however; it is to see the inherent value of every individual as being made in the Image of God and worthy of respect, dignity and honour.

As it turns out, we were fine. The rumours still fly around, but I am learning not to let fear dictate my actions, especially when it would have me act against my values and beliefs.

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Relentless

This is a pin-tailed whydah. On a list of "most desirable birds to have in your garden", he would be dead last, right next to pigeons. The pin-tailed whydah is a bully, chasing all the other birds away, laying eggs in another bird's nest (thereby avoiding parental responsibility), and generally being a nuisance.

This particular bird - the one in the photo - has been flying into my window all day, every day, for more than a month. I think he sees his reflection as another bird and is defending his territory. From about 04h30 in the morning on, one can hear the Thunk! Thunk! Thunk! of him flying into the glass. It is driving me crazy! He disrupts my sleep, disturbs my quiet, and is nearly impossible to ignore.

This morning in church, one of the pastors mentioned the relentless love of God. I wrote the phrase down with the intent to think upon it later. What does it mean to love relentlessly, to love with a determination that does not diminish in intensity or duration? Is that even possible? And if so, why bother?

This afternoon, I was trying to read when the familiar Thunk! Thunk! Thunk! appeared at my window. I was so cross; can that bird not leave me alone for ONE afternoon? And that's when it hit me: that bird is relentless... just like God's love. Determined, persistent, not wavering in intensity or duration, and nearly impossible to ignore. Only God doesn't fly into windows to demonstrate His love for us. God is more creative than that. God got our attention in the form of a newborn baby born into abject poverty, Who grew up to defy all of the accepted social discourses of the day in order to show us how to be fully alive, fully free and fully human.

I can't say that I fully understand that kind of love, but I would like to lean into it and trust it a little bit more...

 

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African Sunrise

Earth yawns in morning mist -

Just five more minutes of sleep! -

Sun tiptoes in, nudges veld -

Wake up! It's time to play! -

Birds twitter the day's schedule -

There's work to be done!

Sing! Fly! Build! -

I observe the unfolding mystery,

catch a thermal unawares, and

soar above the gravity that

holds me down.

 

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Don't Just Dance... Let Yourself Be Danced

Embrace me with a gentle autumn breeze.

Speak of Your love for me in the rustle of the leaves.

Caress me in the velvet softness of the frangipani blossom.

Laugh with me in shifting, sun-dappled patterns on grass and body.

Tell jokes with me in babbling water and hadeda's squawk.

Hold me in the shimmer of morning light on spider's web.

Promise me in the diamonds of morning dew.

Kiss me with the warmth of afternoon sun.

Dance with me in the graceful sway of palm fronds to and fro...

But don't merely dance with me... Let me be danced.

 

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The Morning Commute

"There's only One who never fails to beckon the morning light." - Caedmon's Call

I spent the first three weeks complaining about the morning commute. I spent the next three weeks feeling ambivalent about it, having accepted it as part of my morning routine. This week, I realised that I could actually be thankful for having to drive so slowly that I can watch the sunrise unfold.

 

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Lessons From the Kitchen, Part 2

Lately I've been conscious of not wanting to waste food. I've been playing games in the kitchen to find creative ways to use leftovers or incorporate those tiny bits of ingredients into other recipes rather than throw them out. I didn't stop there, however. I've been researching about the parts of food we DO throw away, such as peels, rinds and seeds.

When most people eat oranges, they eat the flesh and throw away the seeds and skin. This is due to the obvious fact that orange peel is bitter, especially the white part, and too many of us had parents who told us that if we ate the seeds, an orange tree would begin to grow in our stomach! The fun part of being a mad scientist in the kitchen, however, lies in dispelling myths, experimenting, and creating huge messes! As it turns out, if you caramelise or grill the oranges until the peel becomes soft, it loses its bitterness. If you then finely chop the orange (including the peel) and add it to whatever dish you're preparing, you will have the most delightfully, refreshing orange flavour ever!

If an orange can become even sweeter after its "trial by fire", why can't we? I know of a few people who have gone through some tremendous challenges which have softened them and developed a rare gentleness and compassion. Others come through difficulties quite hard and embittered. I do not wish to make light of the suffering and grief through which some people must journey, but this orange has me thinking...

The people who seem to come through their fiery trials sweeter are the people who seem to surrender to the presence of those trials. Like them? No! Try to change them? Sure. But in the meantime, they seem to acknowledge that the trial is there, and then choose to work with the trial rather than fight against it (have you ever seen an orange jump off of the grill?). These people, like the orange peel, are filled with double the life-giving nutrients.

There are a several things in my life I'd like to discard because they are "bitter" or sour, or because I've held on to silly myths and judgements of my childhood. Maybe it's time to take those things and grill them instead, embrace the fiery heat, and hope for a softness and sweetness to emerge.

 

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Lessons From the Kitchen, Part 1

Food is never just food. It is flavour, texture, soil composition, nutrients, germination, pollination and a community of ingredients working together to bring out the best in each other. Today, for instance, I made small tarts with leek, sweet pepper and blue cheese. That is only the end of the story, however. There is a whole history to each ingredient, and I must respect this and work with the food to create something tasty. It is not my talent which produces something edible; it is joining in a great work that has already begun, adding my hands and a bit of love to create a new dish.

Leeks. Leeks are one of my favourite vegetables - an under-appreciated, rarely-used, milder version of an onion with a hint of garlic. What I love about them is that they grow where other vegetables can't: in sand. Sand is not good soil for food; it lacks nutrients, it is too loose, and plants cannot take firm root in such conditions... except for leeks. Leeks somehow manage to not only survive in sandy soil; they thrive.

Blue cheese. I would like to know who discovered that mould on cheese is a good thing! Somewhere, somehow, someone took a risk and came to the delightful discovery that what was destined to be thrown out because it was no longer good was actually a culinary delicacy. These days, one pays a high price for such mould!

Sweet Peppers. Each sweet pepper would not exist if a bee had not come along and pollinated a tiny white flower. Each one would not exist if a seed had not spent many days - unseen and unknown - in the depths of the ground. Each one is, in its own right, a small miracle.

Tart Crust. Such a seemingly insignificant part - the crust - yet one must add just enough water to allow the dough to hold together without activating the yeast prematurely. It is a careful dance of chemistry and one must know the molecular properties of each ingredient and how they work together.

There is also the oven, of course, in which the food must be put and subjected to high temperatures to bring about the property changes of each ingredient: dough rises and becomes flaky and crisp, sweet peppers release their sugar, leeks become soft and aromatic, and blue cheese melts and holds it all together.

My kitchen creations are filled with lessons and symbolism which challenge and teach me on difficult days. Am I willing to work behind the scenes - unknown and unseen - in order to produce something beautiful and nourishing? If the soil of my life is less-than-ideal, will I not merely survive, but choose to thrive? Can I handle a little bit of "mould" and turn it into a sought-after delicacy? Am I grateful for the community in which I am a part, that holds me together and brings out my best flavours? Will I embrace the fiery trials and let them transform me into a fragrant offering to the world? I hope so! I would much rather let the obstacles and difficulties of life become catalysts which yield beauty, hope and child-like wonder at the small miracles of life, than become a burnt and bitter offering that complains about the unexpected and often-painful challenges that present themselves.

 

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Sunday Poem

You can fertilise me, Life,
With obstacles and unpleasantries.
The excrement
I once protested
I now reclaim as a
Cultivator of beauty, lushness,
Turning this mud puddle into
A spa treatment to
Revel in the magic of
Dust, water, air.
With every holy breath
I choose to transcend,
Celebrate grace,
With musty earth
Between my toes.

-a.k.e.

 

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Questioning My Intentions

I've been doing much better in regards to not complaining about my morning commute. I have been trying to see it as a precious gift of time in which to listen to God, be in His presence, and just enjoy the quiet rather than listen to music. I have been practising contemplative prayer, slow breathing, and have arrived at work much more relaxed!

This morning, however, a taxi driver ran me off the road in an act of utter rudeness. Before I could catch my breath, two more taxis zoomed past and cut me off. I was angry at the injustice of it and the lack of manners or thought to others' safety. I wanted to shout at them and give them a piece of my mind... and then I stopped myself.

"What are your intentions?" I asked myself. "Well, duh! To let them know that I saw what they did and it wasn't right!"... And then what? Arrive at work all wound up and grumpy about something you have no control over and cannot change? Umm... well, no...

I continued asking myself questions. "How do you want to begin your morning? In what mood do you want to arrive at work?" Rested, peaceful, ready for the busy morning, creating a warm environment filled with hospitality and good smells coming from the oven.

"Okay, then. Can you think of a better choice?" Sigh... Let it go. Refocus on listening, breathing, being. Enjoy the sunrise, be thankful for the gift of another day, and foster a sense of gratitude and contentment.

I have to confess, this was easier said than done, but I found that in questioning my intentions, I could define what was truly important and reset my course. It made a huge difference.

 

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Choosing to Find Beauty...

"Maybe redemption has a story to tell..."

 

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Making the Most of the Journey

"One's destination is never a place but rather a new way of looking at things." - Henry Miller

"Twenty years from now you will be more disappointed by the things you didn't do than by the ones you did do. So throw off the bowlines, sail away from the safe harbour. Catch the trade winds in your sails. Explore. Dream. Discover." - Mark Twain

I will make many mistakes in my life. There will be things that I will wish I had done differently. But I want to live in such a way that when I am on my deathbed - be it tonight or fifty years from now - I can honestly say, "I do not regret my journey."

 

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Some Wise Words in Afrikaans

I learned a saying in Afrikaans today that I think is brilliant:

"Ek kan nie help as 'n voël oor my kop vlieg, maar ek kan keer dat hy nes maak op my kop."

Loosely translated, it means, "I can't help that a bird flies over my head, but I can keep it from making a nest in my hair." We may not be able to control everything in life (very little, perhaps!), but we can control our attitudes and responses.

I am preaching to myself here, as I find myself complaining about the morning traffic far too often. On my way home, I was stuck in traffic again. When I finally arrived home, I poured a glass of water, only to find brown water coming out of the tap. Guess what my first response was? Complaining! But here's the thing - far more good things happened today than the three bad things I mentioned. I have a job that I love. I have wonderful colleagues, friends, and teachers. I have good health and a family. I have a working car and a roof over my head. Last but certainly not least, I have a faith that sustains me when the things of this world don't. I should be filled with gratitude rather than complaints!

No more bird nests in my hair!

 

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How to Endure the Yucky Things in Life

This morning's commute took 1 hr. 15 min. For all but 8 of those minutes, I was inching along in first or second gear. There were literally only 8 minutes in that whole trip where I got to progress to third or fourth gear (I never did make it fifth, despite the fact that I take the highway to work every day). And I confess, it makes me grumpy. Really grumpy!

I keep telling myself, there are worse things in life. Keep a good perspective; in the grand scheme of things this is really a small matter, right? But the fact is, I LOATHE that morning commute. I love my job, I'm *trying* to sell my house so I won't have to commute, but other than that, it's out of my control. So what does one do when there is an aspect of life that one really, really detests? Because the fact is, while I may not like this drive, I need to accept that it is part of my day and make peace with it.

Enter the random sign. About half way through my commute, I come across this sign every day:

There is no number to phone, there is no vacuum in sight, so... why is it there? Did someone put a vacuum out, free for the taking (and if so, that's a pretty elaborate sign)? It is so random, it makes me smile every day, even though I've seen it multiple times. I've decided to focus on this because - ta da da da! - it is something in the commute that I actually enjoy!

I'm sure all of you have detestable tasks in your lives, so I say to you: find your "Free Vacuum" sign and choose to smile.

 

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The Beauty Around Us

Have you ever stopped to notice a water drop? Such a small thing, yet if we took the time to observe one, we might marvel at all the things happening. In one water drop there are forces of cohesion and adhesion at play - water molecules attracted to water molecules, and water molecules attracted to other molecules. This creates surface tension, which allows a water drop to maintain a spherical form and "roll" across a surface.

Water drops also create beautiful reflections of the larger world around it, but we rarely notice them. Why? Are they too small for our attention? Are we too busy with "important" matters of life - work, activities, errands, and a never-ending to-do list?

I don't want to miss the little things in life. I don't want to be so overwhelmed with the tasks of each day that I miss the beauty that is all around me.

(Photo courtesy of Steve Wall)

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We're All in This Together

The other day I was at the grocery store. The woman at the till greeted me in Sesotho (Le kae?) then looked up at me, only to discover that I'm white. She immediately switched to Afrikaans and greeted me again (Goeie môre). I smiled and answered her in Sesotho (Ke teng, wena? Le kae?). She smiled, and then we both laughed.

When I left, I thanked her in Sesotho (Ke a leboga), and she responded in kind. We both smiled even bigger, and I left the store feeling somehow more... human. But why?

Here in South Africa - especially here in South Africa - one is constantly in contact with different cultures, different levels of class, education, society, political affiliation, worldview... you name it. It is easy to be distrustful of others, as nearly everyone has been hurt or offended in some way. The walls go up without us even noticing, and we live in isolation despite being surrounded by such diversity. But that day at the store - there were no walls. We were as different as could be in nearly every regard, but we had one thing in common which overrode everything else: we were both human, and that was something we could celebrate together.

 

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Tip Toe Through the Traffic

This is going to make you laugh and think I'm really odd, but I don't mind:

This morning I had an overwhelming sense of gratitude for my big toes.

I should backtrack a bit and set the scene for you. Imagine having to leave the house at 6:20 every morning to take your daughter to school. Imagine being stuck in bumper to bumper traffic the whole way, while driving a manual transmission (gearbox). Imagine that trip taking over an hour each morning, and imagine that you are not a morning person!

I keep trying to find ways to be positive so I can teach my daughter to look for the good in challenging situations (although I think she teaches me more than I teach her). We play games in the car, sync our iPod playlists, sing together, talk, laugh, and then pray before she gets out of the car.

This morning, as I was calculating that half of my commute is spent in first gear, inching along, I suddenly realised how impossible that would be without my big toe! Suddenly, the ability to hop in a car and drive my daughter to school - despite the traffic - felt like such an overlooked privilege and blessing (imagine having to depend on someone else to get your children to school each day). I started to giggle. My daughter asked me what was so funny, and all I could say was, "I'm just really happy to have big toes!"

The little things in life can make all the difference in the world.

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