Not Knowing

The fundamental fact of existence is that this trust in God, this faith, is the firm foundation under everything that makes life worth living. It’s our handle on what we can’t see.

Hebrews 11:1-2 (MSG Translation)

Yesterday was a good day but today was one of those days.

Oh Bow. Yesterday you were counting back in 5s and telling the time, but today you are entirely defeated by 6 plus 2.

Yesterday you ate Lebanese food with contagious delight; you sang a song about how much you love tomatoes despite usually avoiding them! Today we had to remind you to swallow each mouthful of rice.

You know you are loved, that there is no competition for being you… believe me nobody even comes close. But today you fought for the best place at the table, the most hugs, the right to be right when you weren’t, the last word.

What happened to ‘not seven, I’m nearly eight’? There was only babble and misunderstanding today, all those new phrases that you are so proud of, apparently out of reach. Yesterday you expressed ‘I don’t want to’ with words and we counted it a victory but today you kicked and scowled.

Two steps forward, one step back.

Lockdown has revealed an addiction to progress that I wasn’t aware I had. If life is usually a steady plod forwards, it now feels a lot like the pause button has been pressed… sometimes even the rewind button as described above! So many plans are frustrated on so many levels. I’m not sure I like the space that we’re paused in; it feels like breaking down at a nondescript viewpoint near the bottom of the mountain when the summit is within sight. We were headed somewhere great but the onward journey is now uncertain and, now it is stationary, there are too many people in the car!

Into this strange space some news arrives – long awaited progress in finally receiving a diagnosis for Bow’s mystery metabolic condition. Some certainty at last! Genetic testing has revealed a mutation consistent with Mitochondrial Disease. Oh… This is not what we have been treating her for and now we are faced with more questions than answers! Her specific form of the disease has no name and there is only one other surviving case on record; she really is one in a billion!

The basic underlying problem is energy production which makes a lot of sense of those days. The condition is progressive and that word is terrifying – this isn’t the progress I crave. Suddenly I feel like I would take a lifetime of ‘off’ days if it meant Bow could stay as well as she is right now, making enough energy to grow and learn new things. She hasn’t had a metabolic crisis for months and is easier to get back on track when she shows signs. Can we just pause here a little longer?

I’m thankful for the perspective this diagnosis offers and the encouragement to notice everything that today has to offer. I’m thankful for this lockdown season and that it has challenged my love of progress. Racing ahead, pausing, going backwards – does it really matter? Whatever the pace of progress, whatever the level of certainty given, it need not provoke fear in us when we stand on the steady ground of faith in an unchanging God.

Other news

Thailand continues to record very few Covid cases, most are returnees from overseas in State quarantine. There is now more freedom to move around the City but school has not yet reopened. Online study is wearing thin for Elliot and Sam but they enjoy the zoom calls with their classmates. We are really proud (mostly) of how all three children have adapted to so much time in each other’s company! Getting enough fresh air and exercise has been a struggle through hot season but the monsoon rains have now arrived and it should start to get cooler.

In our neighbourhood unemployment is still a bigger issue than usual and anxiety is high as there has been an acceleration in the plans for slum eviction. It is possible that the new Khlong Toey ‘Smart Community’ now being advertised on billboards throughout the city, will gain traction among the wider public because of concerns around the spread of Covid in crowded conditions. It is only with very close inspection that it becomes clear the plans for redevelopment will only cater for a few. We think that people are kept distracted from rising up at the current injustices by the almost daily handouts of food. As rioting among oppressed groups causes ripples across the world, we long to see some of the same passion for justice stirred in hearts here.

RoyRak has received a wonderful response to the appeal for support to keep the staff in full time work. Online sales have also done better than predicted and we are hopeful for the future! We have just taken on Ricky, a marketing intern with great expertise in some of the areas that we struggle with most. He is working hard on rebranding and launching a new website next month… we are super excited to widen our customer base and get the product known! We have also employed our neighbour Pui to provide mentoring for the RoyRak women and begin planning an apprenticeship scheme for next year. The economic changes have given us the push we needed to put some of our dreams into action and take RoyRak to a new level!

Pleaser pray for our family:

  • For our hospital appointment with Bow’s specialist on Tuesday 9th June. Now we have the diagnosis we will be planning further investigations into areas that may be affected, especially heart health. Pray that we might be put in touch with researchers or similar patient cases. Pray that Bow continues to gain strength and retain information. Pray that her learning will have jumped forward enough to get a school place soon.
  • Elliot was treated for a nasty parasitic illness after repeated bouts of sickness over a month but seems to be recovering well. He has also developed some stress symptoms including a bad eye twitch. Please pray that Elliot won’t put himself under high pressure to perform with the online schooling and will receive the affirmation and connection that are so important to him.
  • Sam has just learned that one of his two best school friends will return to the UK next month. Pray for him as he grieves this change and generally mourns the ‘new normal’.
  • For the sadness of cancelling our trip to the UK this summer. Pray that we will find other ways to connect with churches and supporters. Pray for our wider families (including brand new babies) to stay well and connected at this time.
  • That God will use our presence here at a critical time, that it won’t feel like wasted time but that we will see fruit in our relationships and ministry.

One thought on “Not Knowing

  1. Many thanks for the news. We still are with you in our hearts and pray for you as family, for you in your work and for you in your Christian life!
    May the LORD be with you all the time!
    Annemarie and Dieter (Germany)

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