Thursday, 28 March 2013

an update on how a friend is going

No, NOT the Chengs. This is from bloggy buddy Jean, who writes with wisdom and faith:

an update on how we're going: So how is Ben, I hear you ask (some of you literally)? And how am I?

Well, Tuesday - two weeks ago - was a turning-point, both in what was happening inside me (more about that another day) and with Ben. I think that's why I felt ready to publish a cry of hopelessness, which waited in the wings for weeks.

At that point Ben had been sick for over a month with constant headaches (it's not the first time: last year, he missed both a term and a month of school). Some days it was a migraine, so severe that he could only lie in a darkened room; other days, a headache far worse than what you or I might call a "bad headache". He stayed home from school and bore it with silent resignation.

Not easy to watch when you're a mother.

Every night I'd lie awake and pray, over and over, "Please heal him, Lord. Please let him be better in the morning." Every morning I'd wake up and think, "Maybe this morning he'll be better" - then I'd look in his eyes and see the shadow of a headache. Every day I'd sink a little deeper into discouragement.

Until that Tuesday, when he woke with a worse migraine than usual, and I rang his paediatrician and said, in essence, "We've had enough. Do something!" And she sent us to the hospital and all my Facebook friends prayed and we found ourselves in the emergency department (that's it in the picture above). And I sat in a chair in a little room and watched a drip running into Ben's arm and enjoyed the silence (rest! peace! It's a little sad, but I have a soft spot for hospitals).

While we were there, Ben was interrogated and examined by no less than 3 doctors. We saw one of the top paediatric neurologists - something that wasn't supposed to happen, Ben's chart didn't ask for it, but someone (providentially!) stuffed up along the line - and Ben got a new diagnosis and a new medication.

So what's his diagnosis? Chronic daily headaches (you can google it) as well as migraines.

Hearing that your child has a chronic condition isn't easy. I've shed many tears of shock and grief during the last two weeks. But it's also a relief. Why? How can it be comforting to discover your son is chronically ill?

Because we now have an explanation for why Ben's headaches haven't gone away. We know what to expect. We know what to do. I don't feel so helpless. I don't wake up every morning wondering if his headache has gone away in the night (although we will keep praying that it does) only to have my hopes dashed.

We know that progress will probably be slow. We know what Ben needs: a clear structure to his days, as much school as possible, good stress management, and daily exercise. We don't wake up wondering if he should go to school: we just help him to lead as normal a life as possible.

Every morning he gets his uniform on and I pack him into the car (no more time spent second-guessing his condition and wondering if he's well enough). Every morning my husband walks our younger boys to school (no more trying to do it all by myself). Most lunchtimes I get a call from the school asking me to pick him up, and he comes home quiet and pale.

And yes, he's in pain. And yes, it's hard for him to concentrate. And yes, he usually can't last the day. But he makes it through the first four hours of school, and he loves learning, and he has good friends and amazing teachers, and the year 7 coordinator and his mentor give him constant, attentive care. I am so thankful for these things.

Our paediatrician called us "A family in crisis", and she's right. But we're also pulling together, perhaps more than we ever have. My husband takes Ben swimming. I take him for walks. We pray and talk and, even, laugh. I'm so grateful for a husband who puts his needs aside to care for us at the end of every long day.

Now that I know what to expect, I also know what I need to get through this: the support of my family, my neighbour, my friends. Rest, exercise, an emptier timetable. Plenty of Bible and prayer. And the joy of having people like you say to me, "I'm thinking of you. How can I help? How can I pray?" That means the world to me.


Philip Griffin said...

Gordon, thanks for posting Jean's blog. I was very moved to read this post. Sue and I have had a lot of experience with unwell children (one with juvenile uncontrolled epilepsy, the other with permanent disability) and I could relate to what Jean has felt. May the Lord sustain her, her family, and their much loved son.

Jean said...

Just noticed this. :) How about that?! Funny to see myself over here...

Gordon Cheng said...

It's a great word, bloggy buddy Jean!!