The words don't really come.
Just utter thankfulness.
After her ECG yesterday, we were welcomed into the echo by the top Consultant for acquired heart conditions in children from the UK. We haven't seen him since those dark May days of 2013, so we knew immediately they were preparing for this to be a milestone appointment too. He chatted to Heidi about their shared birthday month as I lifted her onto the bed and within seconds the monitor was on.
Now familiar black and white images of a little beating heart appeared on the screen.
"It's a very good picture - very clear of the coronary arteries. They are looking good. They aren't completely uniform all the way down, but I don't see any danger. I think we're good to move on. I'd like her to have a CTG in the next three months to ensure we're getting a good picture of what's going on all the way down, but I'm happy. I'd like to see you again in a year, and after the CTG we can decide whether she'll be ready to be discharged, or whether we want to keep seeing her yearly."
So much information. My head was a whirlpool.
The tentative question was asked... "And the medication?"
" Oh, she can come off that today. There's no need anymore. This year has been a precaution. I'm happy for her to come off it immediately"
Slightly stunned and trying hard to gather my thoughts, we packed up our bits and stepped out, heading immediately to the office of Heidi's cardiac nurse. This has always been the place where I have been able to get my thoughts together, speak openly and feel under no time pressure to keep moving. Our old cardiac nurse, James, had moved on this year, but the new nurse, Franky, made us feel immediately at home. I voiced my concerns about the possibility of her being discharged and had the reassurance that she would always be in the end of the phone, we talked about things to look out for and how best to keep Heidi healthy.
Lots of water.
A good diet.
Good dental hygiene.
Heidi listened well... Taking it all in, and taking it seriously. She was as delighted as we were to be off her medication, but her big blue eyes drinking in all this information reminded me she is no baby anymore. She is ready to start taking some responsibility for keeping her heart healthy.
We walked out of the waiting room and as I sat feeding Elias, we whispered a prayer of thankfulness together. This road has been four long, at times anxious, years for our little girl. Coming off the medication is not the end of the road... There will always be the white noise of question marks over her heart in the back of my mind, but this was huge.
And in it all I felt peace.
Last night we put our little girl to bed purposefully without any medication for the first time since she was nine weeks old. She fell asleep as I read "The Secret Garden" and in the dark I laid my hand on her little forehead and prayed. Words of thankfulness, words of hope... And a prayer "Lord I believe, help now my unbelief"...
These next few weeks will be about learning to trust the Saviour all over again. Our safety blanket of medication is gone, and there will be moments of anxiety for me where I feel out of control.
But then I never had control in the first place.
But I know the one who does.
Please pray our little girl will be kept safe, pray we will trust the Saviour as we adapt to life without the safety blanket.
Please pray, most of all, that all our children will entrust their hearts to Jesus.
Thank you from the bottom of our hearts.
Thank you Jesus.