Tuesday 28 October 2014


Its been an emotional day... walking the streets around the Brompton brings back those old emotions... the highs and the lows. The elation of good news. The devastation of bad.

Today has been no different.

We saw the power of prayer unfolding before our eyes as we went through the stages of the routine that is becoming familiar. Heidi napped as we walked to the hospital and miraculously stayed asleep as we entered the building. We had to wake her for her height and weight checks. Amazingly, she sat happily and lay happily as they did their measurements. Considering she had been abruptly awoken and immediately in, this was a miracle in itself.

The ECG went without a hitch. She sat on my lap, covered in sticky plasters and wires, looking curiously down at the mass of cables coming off her body. Quiet as a mouse, she said a simple "thank you" to the technician as we left the room.

And then to the Echo. We had come armed with snacks, ready for the battle to ensue with our 19 month old as we forced her to lay still for 15-20 minutes. We were in total shock as we saw people's prayers being answered before our eyes. Heidi lay down obediently when asked, and lay staring around her as the sonographer carried out her investigation. No snacks were necessary (although we did give her a couple of grapes at the end as we had them). She lay beautifully. Still. Quiet. Contented and Curious. I sat and thought "whatever the outcome of this, look at this beautiful little girl - we are so blessed" God was answering our prayers before our eyes.

Perhaps it was the smoothness of everything, perhaps the contented nature of Heidi, perhaps the "it all looks good" from the sonographer as we went out the door. I don't know... but I felt such peace, and hope.

And as we entered the Registrar's room for the results, 20 minutes later, my heart raced and I took a deep breath as we walked in.

The truth became apparent in his opening questions.

"How is Heidi doing?"
"Does she seem happy and healthy?"
"Is she ever breathless after exercise?"
Wait a minute... I thought... why is he asking this if she's all better?

He wouldn't be asking this if she was better.

"Heidi's arteries actually remain pretty much unchanged from last time we saw you..."


"I can see from your face that wasn't the news you were hoping to hear"

I was stunned. Really? Could this be? Could this really be? Was the Lord really going to allow us to keep walking this road? To take our hope away?

I gulped back the emotion and allowed Dave to speak for a couple of minutes. I wanted answers. I needed to understand. The Registrar was helpful and kind, but as a natural optimist, bad news makes me suspicious... and we didn't know him. He didn't know us. Didn't know Heidi. Didn't know our case. After a short, and helpful, conversation, we decided to speak to James, our Cardiac Nurse. A familiar face. Someone who knew Heidi. Someone who could sit down and explain all of it to us.

And he did. And God used James to speak peace back into this knocked about, anxious, weary-worn heart. He gave us time... he sat and worked through every question. He patiently talked us through the measurements - May, June, July, January and now and showed us on diagrams what was happening in Heidi's heart.

Her arteries remain unchanged. This means that if they heal now, it will be miraculous. As far as the Medics are concerned. Heidi's arteries have healed as much as they are going to.

This is hard to swallow... but it is also a miracle in itself when you consider the "impressive aneurysms" that had formed on her arteries last June are now "mild, uniform dilatations"... she is in a much safer place than she was last year and although the medication is still absolutely necessary, she is much lower risk than she was.

This verdict means one of two scenarios for our Heidi - either this is something she will spend her life battling. It will have little impact on the everyday, other than the daily necessity of medication. But it will always be there, hovering in the background. OR, she will grow into them. And this is now the hope we cling to. The fact they have stayed the same size despite her significant growth since last January, is positive. It means that, given time, and if they continue to stay the same, she will hopefully grow into them in the next couple of years or so.

Of course, life with medication is really no issue. The meds protect Heidi, she takes them happily and doesn't object, so really its not the end of the world. Except that the side effects of the meds mean that any prolonged temperature is risky for her. And the enemies of chicken pox and flu lurk through the winter and spring months, bringing fear to my heart.

This past year, Heidi withdrew from social settings for six months while chicken pox ran riot round our friendship circles. The prospect of a future like this for her was what caused me to nearly break down at the news.

And yet here, at least, we had good news... James was insistent that Heidi needs to lead a normal a life as possible... for both of our sakes. These illnesses will always carry risks for her, but it is more important that she grow up to be a happy, well-rounded little girl. If these illnesses come our way, they will give us all the support we need to ensure that Heidi survives them safely.

So it seems that while today was not the news we had hoped for, prayed for, longed for, it is the freedom pass back to some semblance of normality. We will no longer be living on the run from these illnesses, in fear of every little virus. That is mercy in itself.

Tonight, David and I have sat, and talked, and absorbed, and prayed. And yes, I have cried. Disappointment. Shock. Thankfulness. All rolled into one big ball of emotion.

Our little girl is beautiful... externally healthy, oblivious to all that is going on around her. She sang all the way home. For her, today was an adventure. Special time with Mama and Papa. And she has gone to bed, on her meds, healthy and happy.

What more can a Mama really ask for?

I can't thank you all enough for your prayers today. We are utterly convinced that the Lord has heard every one of them. For reasons only he knows, He has willed this road to go on a little longer for us. We trust Him. Even in the uncertainties. I know He has a plan and a purpose in all of this and I trust that. It's a broken, trusting heart. But trusting all the same.

Why? Why when it seems he has utterly ignored our cries today?

Because sometimes the road of growing closer to Him is costly and rocky and hard. That's where we are. If this road means our girls see our faith more raw and real, and consequently place their own faith in him? Then every rut and bump and rock in the way is worth it.

Hearts that love Jesus matter more than hearts with perfect arteries.


  1. Ah Claire I have tears rolling down my face at this. I have been thinking about you all today, I am sorry it's not the outcome you were hoping for, yet I am pleased at the same time that Heidi will be able to carry on as she has been doing. What a brave family you are. And if her heart is anything like her Mummy's, well then it's very beautiful indeed. Sending you all lots of love. Xx

  2. You and your family are truly an inspiration. God has Heidi in his hands and he is in charge of every single beat of her heart. Lots of strength and hope for you as you keep going and give her that loving, happy childhood you are clearly so good at providing! I will keep praying that she is miraculously healed, either right now or by growing into/out of the dilations.

  3. May God bless you all for your faithfulness and trust in all that you are going through. So glad there are positives in there amongst the dissappointment. She is a truly amazing girl! So glad the practicalities worked out well - it sounds like she did amazingly well to take it all in her stride. Sending much love and continued prayers. xxx

  4. Oh sweetheart, I know this wasn't the news you wanted to hear. I've been thinking and hoping and praying and we all wanted it to be option 3. But perhaps in the end it comes back to Jeremiah: plans to give you hope and a future - you have hope, hope that Heidi will grow into her arteries, and she has a future, a wonderful, happy, very normal and very very loved future xx

  5. Oh Claire, how brave you all are, and such an inspiration to be facing all these struggles with such courage. You write about it beautifully, and your faith really moves me . Little Heidi is just beautiful, and I'll continue to pray that infection stays away, and that she has a peaceful Winter. Thinking of you all xx

  6. Oh Claire, I am sorry it's not better news but well done for seeing the positives and hanging on to hope. Thinking of you all xx

  7. Claire, this is the first time I have encountered your story as a family and my heart really went out to you with this appointment. I too have sat in cardiac appointments and heard news that I didn't want to hear. My little girl is now 3 and currently doing well although I know that there are huge steps ahead still to be taken and the future is scary. I too have drawn huge strength from my faith and the knowledge that God is so much bigger than all of this. My thoughts and prayers are with you and your family and I pray that Heidi will continue to do well and will grow into her arteries. Huge heart hugs to you x


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