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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