Thursday 29 May 2014

The Day of Horrors: One Year On...

I'm taking a break from Savouring the Season this week... I'm so sorry to all who have stopped by for it, but today is a very important day for us and I want to pause and remember in thankfulness all that The Lord has done for us this past year.

It is no over-exaggeration to say that this day last year was without doubt the darkest, most awful day I could ever have imagined, never mind experienced. In one fell swoop we had the breath knocked out of us. We had gone to hospital hoping for good news for our darling baby girl after a hideous, out-of-nowhere attack of a very rare disease called Kawasakis and were given the news no parent ever wants to hear.

"Your baby could have a heart attack at any moment. You are not going anywhere. The disease has attacked her arteries and they are in a mess"

On this day last year, I sobbed like I didn't know it was possible to sob. I remember clinging to her cot bars in floods and collapsing to the floor while nurses tried to swiftly draw curtains around us so we didn't have an audience. I remember the numb shock. The inability to breath. The utter inability to believe. It feels so real, so recent... And yet a lifetime ago.

One year since I wrote this...

Wednesday 3.30pm
Shock. I feel like everything is spinning. I cling to the side of her cot and sob, and the next minute I am overcome by a wave of peace. Then the rollercoaster continues. Feeling physically sick, thinking I'm going to collapse. I KNOW God is here with us. He holds us tight. He will not let us go. We sit in tears and cry for our baby girl. It just hurts so much.

Wednesday 7.20pm
Our little Heidi is very sick. Please pray for her healing. We know that God is good and has his purposes, but we are hurting and would cherish your prayers. Please pray for little Heidi's heart and pray for wisdom for the Doctors. Please pray for little Ava too, as it could be a long time with an absent Mama.

Wednesday 9.30PM
We are at the Brompton. The Echo revealed that the coronary arteries are inflamed in some places to 3-4 times the size they should be. The danger is obviously clotting and heart attacks. We are in total shock, but thankful to be in the best place... I have cried more tears than I knew I had in me...

Reading back through this stuff is hard. But it also leaves me grateful. One year on, and two of our baby girl's arteries have healed themselves. Incredibly. At the time, we were told there was nothing the doctors could do... Only time would tell if Heidi would ever be able to live a life free from medication, free from the limitations of blood thinning treatment. Only time would tell if she would survive.

One year on and she has survived. She still has one artery which is not as it should be... And we live in hope, and pray, that it too will heal. Life in the shadow of Kawasaki's is not easy. We live every day on the run from illnesses that could lead to even worse consequences than what our Heidi has already coped with in her little life. Flu and chicken pox could be life-threatening.

And yet, in many ways, life continues as normal. We live on, so thankful that aside from a nightly dose of medication, Heidi's life resembles that of any 15 month old. She is a beautiful, sweet little fighter and we love her so very much. All that we have been through together only winds those little knots of love tighter round your heart and I can honestly say I am so proud of both my girls, and how they have coped with huge burdens this past year. Burdens I have coped with at 28, they have dealt with in their first two years of life.

And yet, through it all, I see that God is in control, is good, and faithful.

Why did he allow this to happen to us? Why did he allow our baby girl, perfect at birth, to be attacked by such an awful and heart-wrecking disease? Why?

These are questions I battle on a regular basis... But they are questions which I can honestly, in peace, lay at the Saviour's feet...

Because all things happen for the good of those who love him.

Somehow, this is for our good. Our good. Heidi's good. Somehow. And I cling to that, sometimes through tears, and thank him for his faithfulness. He held us so completely through those dark hospital days, and holds me even now as we seek to provide normality for our girls in the aftermath. 

After the storm comes the rainbow... In the darkness come the stars... There is beauty in the brokenness, there is hope in the dark. I know that. I've learnt that. I'm learning that still.

Every day.

One year on.

Ava and Heidi - one year ago in the Royal Brompton Hospital
Ava and Heidi... one year later playing in the garden


  1. Oh my, what an utterly terrifying experience! I am so sorry that you all went through such a difficult time, but I am thrilled that you have come through the other side of it. What a little fighter Heidi is, and modern medicine and the NHS are amazing! x

  2. What a strong woman you are Claire. I enjoy reading your blog. What a long way you have come . Heidi is beautiful and Ava to. You have a wonderful little family . Glad Heidi has made so much progress she is a real little fighter. X

  3. We continue to pray that Heidi will be fully restored to full health.

  4. Sitting in Kings reading this...very apt and a good reminder! Xx

  5. Wow what a traumatic time and not something that just goes away. Thank goodness she is doing so well and I hope beyond hope that she continues to do so xx #loudnproud

  6. What an awful experience, I am so glad to hear that Heidi is recovering and I hope that this continues x

  7. Oh Claire, so glad that your little Heidi has made such a wonderful recovery. Still not out of the woods yet, I know. But the last year of happy family moments, hugs and 'savouring' the beauty of life I'm sure helps you feel there is hope in the future xxx

  8. I am so happy that she beats the odds and I hope she will continually to do so. Shes such a gorgeous girl =) #loudnproud

  9. Claire this post made have tears streaming down my face. Bless you and your family for what you have been through. You sound so positive throughout it all and I am so glad Heidi is doing so well. She is beautiful. x

  10. I'd never read your whole story about this before - What a brave family you are and what an amazing little girl and an amazing God to have got you all this far. Will pray for continued healing. xxx

  11. Life is so fragile, it must have been a horrible time. Lovely to see her so happy now x

  12. God is ever faithful. Looking at your beautiful girl! I know she's not been given the 'all clear' but I also know that God is bigger than all of this and has you all in His hands. x x

  13. I remember reading a quote somewhere that God sends the most special and unique children to only the most loving families because they deserve the reward of parenting then more than anyone.


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