Perhaps too there was a sense that I needed to be strong this time. Our baby girl is no longer a baby, but an active and curious little girl who is beginning to understand that her heart is very special. We had "played" hospitals at home this week. The girls laying down on the sofa while I "scanned" their hearts with a toy mobile phone so they could see on the "special television". We had talked about Heidi's tummy being covered in stickers and wires to make a special picture of her heartbeat.
We had worked hard to prepare our little girl, knowing she would have no recollection off all her previous appointments.
But ultimately, the truth is, that when God's people pray, and we had a lot of people praying, he promises to fill us with a peace that goes beyond understanding. Always. Without fail.
He came through - as He always does.
We arrived in good time, setting ourselves up in the waiting room, Heidi busying herself with all the toys and books while I fed Jonas. I finished up and we were called into the first stage of our appointment almost immediately. We went through the usual routine - ECG, Echo, weighing and measuring while my Mum walked the streets of Kensington with a sleepy Jonas. Dave and I commenting, as usual, on how much Heidi was taking it all in her stride. Curiosity and interest, rather than fear or worry. God is good.
At the end of the Echo, the Sonographer told us in summary what we'd been hoping to hear. The words that nine months ago were so devastating to us are now the words that bring relief. There has been no change. The arteries remain uniformly dilated. But Heidi has grown and so, in comparison with her size, the dilations are small...
We are so very thankful.
An appointment with the Doctor, followed by our ever faithful Cardiac Nurse Specialist James who never fails to put our minds at ease and explain everything so clearly, followed, and, after a quick stop at the craft table in the waiting room, we were on our way home. The relief was tangible.
We hope now, with the Doctors, that in a year's time, she may have grown into her arteries. There is a chance that in a year, she may be able to come off her medication altogether. How much we long for that! But I have learnt not to pin my hopes on a Doctor's predictions or prognosis, but. Instead to pin them on the one who is steadfast and certain and will hold us fast, whatever the future holds.
Our walk down this dark road began as a nightmare. We hoped and cried desperately for an end to it all. Had I known we would still be in this place over two years later, I'm not sure my own devastated heart could have survived. But God has given us more grace. Each time we have thought we could not sink lower, we have found Him to be our strength and our rock.
Now, the road is still painful and hard. Of course I wish our little girl had normal sized arteries, of course I wish we didn't have that small background noise of worry, of course I wish her to never have to undergo any pain or heartache. The road IS rough, but with that comes one assurance. We have never, and will never, have to walk it alone.
For that I am forever thankful.