Thursday, March 28, 2013

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.

13 comments:

Fiona McLean said...

Jean, This brought tears to my eyes. I've been praying for Ben this year, as he's come (indirectly) into my world, and will keep praying. And I'm so glad that you have found the school supportive! Love, Fiona.

Martin Chung said...

Dear Jean,
Thank you for the update. Pearl and I have also been praying for Ben since we last read your post many weeks ago. We'll keep Ben in our prayer as long as needed. Best, Martin

Jane Lister said...

Thanks so much for sharing this, Jean. I keep praying for you all and am now thanking him for the greater sense of refreshment you're all feeling despite the continuing struggle. Truly a wonderful example to us all and one for which I am especially grateful xxx

Jenny said...

Thanks for the update Jean. Sounds like you have a long road ahead of you, but good to have some sense of how to manage Ben's life a bit better for both him and you. Will keep praying for you.

Deb said...

Good medical staff are SUCH a blessing, aren't they? Praying for your family and Ben in particular.

Gordon Cheng said...

Thanks Jean. Thinking of you AND praying for you, and the whole family of course.

Karen said...

Glad to hear you have some answers on what's going on, and, more important, a plan to manage it. I always find having a plan about what to do makes a big difference to how I'm coping with difficult stuff. And although it's hard, I guess knowing that it's chronic gives you that mentality that this is more of a marathon than a sprint that will be over quickly. It's building in skills that he'll use for the long term too.

Praying that you'll continue to get the support you need and that things will be okay at home and school. I meant to reply to your earlier post about it too, sorry that didn't happen. Take care xx

helenpmking said...

Thanks for the update Jean. Praying the Lord will carry you, Ben and the family. We're going through a tough time with our 3 year old at the moment, so appreciating your honesty and Christ-centred approach. xxx

Philip Griffin said...

Jean, 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 you have felt. May the Lord sustain you as a family, you as parents and your much loved son.

Kyles said...

Praying for Ben and you all Jean.

Brad Hansen said...

Hi, Jean - The diagnosis Ben received is the same as the one our son received many years ago. I wish I could say that "they all lived happily ever after", but that has not yet been granted. But Ben (and our Kirk) have been granted praying parents and friends. It's a story God is weaving which, by faith, we know to be good. Blessings, Brad Hansen

Rich Morrison said...

Hi,
Thank you for the series on suffering; quite encouraging. I have the same diagnosis as your son, since aprox. 1991. It's been this way a long, long time. Suffering has been an understatement, or so it would seem, until I realize that there are others like me in the world, with the same condition, or worse. Interestingly, I've struggled to hold onto some of the versus you referenced, but like you described, it's difficult, until we realize there is nothing we can do, and let go. Let go of the things in our world, our expectations and more, and trust God looking forward to the new heaven and new earth. God does deliver! He lifts up the bowed down, as I've experienced Him do for me on quite a few occasions. Even with that, however, the days of toiling have continued.

Again, thank you for your articles, and explanation to your sons condition. I've saved them and plan to plod my way through the references to scripture, slowly. In a way, your testimony seems to validate the suffering, depression, hopelessness, pain, and encouragements too (I have faithful brothers who point me to the cross and to my heavenly King and His promises through trial, on a regular basis). The scriptures are true, yet again experienced through what you shared, that others are going through the same thing as what we suffer. I am, and continue to cast my cares upon Him, for he cares for me, and your son! Yes indeed; hallelujah!

In His Mighty Grip,
Rich

Jean said...

Amen. Thanks, Rich. I pray that God cares for you richly and brings you deep comfort from his word.