Monday, 20 July 2015

Back to the Brompton we go...

Joy and pain are two arteries of the one heart
That pumps through all those who don't numb themselves to real living
Ann Voskamp
1000 Gifts notes

Kawasaki Disease has been in the news this week... it still seems surreal to me that in this day and age there is a disease that has the experts so baffled. At last, they suspect they may have found a cause. It gives us some possible answers...

... but it doesn't help us with the daily reality of living with the consequences of it.

For the most part, Kawasaki Disease is an almost invisible part of our lives now. There is daily medication for Heidi, and there is the white noise of anxiety of illness that always looms in the background, but in the day to day, I barely think about it. We have come such a long way since those early days, when I couldn't see how life could ever be "normal" again.

However, when appointments loom, I guess its only natural that your anxiety peaks.

Tomorrow, we head back to the Brompton with our little girl for another Echo and update, Ironically, I feel the most calm I have ever felt before one of these appointments... ironic given that for the first time, I am going without hope. In all our previous appointments, I went with the hope of the news that her arteries had healed. But with that hope came the constant fear that they would tell us they had stopped healing.

At our last appointment in October, that fear became a reality.

And so we go tomorrow, the hope being simply that things have not got worse, that she is coping fine on her medication, that we are just to continue on as we are. That was my worst nightmare a few months ago...

And yet somehow, there is relief in knowing the truth... there is relief in knowing what you are dealing with. Sometimes uncertainty is actually harder to cope with than the truth, however awful it may be.

And in the context of Heidi's heart, and little arteries that are still ballooned, the quote above grounds me as we prepare for tomorrow... without the pain, we wouldn't feel the same depth of joy. The joy of life... thankfulness for a beautiful little girl who is loving life and growing and thriving... God has allowed this heartache in our lives to help us to know the joy of real living. How much deeper our appreciation of life, how much more wonder at the developments of modern medicine... how much greater our thankfulness to our Heavenly Father who has had us so firmly in his grip throughout this storm.

I may feel a bit more battered and weathered, I may wish our life was simpler, I may long for a day where the slightest temperature in our little girl won't send my mind reeling with fear.

But I am thankful that the war wounds, the scars, the fears and failings have helped us know the Saviour better.

He is good. And as we walk through those hospital doors tomorrow, he'll be right there with us...

Please pray...
* That Heidi won't be afraid, and that she will cooperate with the Doctors, particularly during the ECG and Echo which require her to lie still for around 20 minutes.
* For stability in her case... that things won't have gotten worse...
* For emotional strength for us
* For practicalities like Jonas' feeds - that everything will work out in terms of timings
* For Heidi as she begins to grasp that there is something different about her heart, and for wisdom for us as we seek to explain that in a sensitive and age-appropriate way
* For a miracle? That perhaps, just perhaps, God may have healed her...

Thank you to all of you for your continued love, support, well-wishes and prayers. We are hugely grateful to God for the provision of each one of you. He has used to to encourage us in ways you will probably never know.

We are blessed beyond belief.


  1. Thinking of you all Claire. Lots of love xxx

  2. Thoughts and prayers are with you all tomorrow Xx

  3. Will be specially praying tomorrow - that you will be held in the Saviour's loving care, and know His presence and peace x

  4. We'll be thinking of you all, Claire and praying for all those things you've said. All our love xx

  5. I will be praying for you all

  6. Thinking and praying for all of you and all the things you listed xx

  7. Will be thinking of you. X

  8. De er alltid i våre bønner, og Gud er nok med dykk og vesle Heidi. Gud velsigne dykk som familie. X x x

  9. My thoughts and prayers for you all tomorrow - praying for healing and for all the practical issues too xxx

  10. Will be thinking of you today!
    xxx Catrin

  11. Anna Louise Bennett20 July 2015 at 14:33

    I'll be praying for little Heidi x

  12. Praying for all those things, Claire. God is Able. Xxx

  13. Praying for you and the day ahead xx

  14. Hoping all goes well tomorrow Claire. Sending lots of love xx

  15. We'll hold you all in our prayers - and I am praying for a miracle, even though I'm hoping for a nice ordinary boring sort of appointment for you :)

  16. Thoughts and prayers for you all tomorrow and beyond. Xx

  17. Upholding you all in prayer. May you have a real sense of His daily sufficient grace x


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