Friday, September 28, 2012

A Heartfelt Letter, Thank You

I opened my e-mail on Monday and found this e-mail. It means a lot to me and especially because after he sent it, the writer was filled with doubts and regrets that maybe he shouldn't have sent it, that I'd think him stupid, or weird.  He sent it anyway and I am glad he did. It gave me solace after our visit to the cardiologist and the news that Louise's surgery will be brought much forward. Probably in the new year now instead of this time next year.  

It is never wrong to do a good thing and the best time to do a good thing is when you think of it...wait for later and it won't be done, you can be sure of that. 

With his permission, here it is.  Thank you.

Dear Jennifer, 

I was very touched yesterday (on returning from 2 weeks without email) to read your latest "Little Louise" blog post. Then this morninglast night (around 6am) I couldn't sleep and felt strongly that I needed to pray for Louise especially, but also for you and John, and for all the children - Rebecca, Miriam, Laura, Isabelle and Peter. Some verses from Psalm 139 (you might know it as 138) came into my mind after praying for you all. 

'If I say "surely the darkness will hide me, and the light become night around me", even the darkness will not be dark to you; the night will shine like the day, for darkness is as light to you. For you created me in my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you, when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained to me were written in your book before one of them came to be'. 

The other thing that came into my mind after praying for you was a thought that has been important for me for a long time, and particularly at difficult times – that God holds each one of us in the palm of his hand and he has written our names there (this bit, about the names being engraved on God's hand is from Isaiah 49), and I thought it might be helpful for you to remember that God has your name, Jennifer, and John's name, and Rebecca's, Miriam's, Laura's, Isabells's, Peter's and Louise's names engraved on the palm of his hand. 

Bye for now and if you ever have a moment to drop me a line (email or text) to let me know how you're all doing, and how, specifically, I can be praying for you (I'm praying for Louise's heart whenever I remember, of course), I would love it. 
With much love and big (virtual) hugs, 
and brother in Christ, 

Friday, September 21, 2012

I Can't Shout This Loud Enough

Today my heart is heavy.  I am sitting here writing this and listening to my little girl who loves life with gusto puffing and panting because she had just joined in the actions of a Wiggles song.  This morning she got out of bed and ran in to hug me and John and as we cuddled her she gradually got her breath back.  For the first time in exactly two years since her Glenn operation we have felt the need to telephone the hospital and the specialist nurse for advice.  If you remember Louise's first emergency operation, her breathing was her body's way of telling us she was struggling.  For two years I have been telling myself that everything's all right. Today I'm not feeling so confident. Today I'm acutely aware that Louise is not a normal child. Today I'm remembering just why I am a member of Heart Baby groups on Facebook. Today I know we have to do it all again, and maybe again...and again.  Yes, today my heart is heavy.

  Because like it or not I'm a CHD Mom.

So what's it like to be a CHD Mom?  Oh it's just fine.  You soon get very accustomed to sweet little blue toes and a navy coloured mouth after a trip to the swimming pool.  Sometimes we explain to people why we're splashing the warm jacuzzi water onto her to heat her up...sometimes we don't bother, let them think we're mollycoddlers.  There's no wheelchair, or a limp, or disfigurement.  There's no behaviour you need to explain away. It's hidden and secret apart from her beautiful white scars. I don't mind her scars, they remind me that she's one of only 15% of children in the world who need heart surgery that ever receive it.  She's not part of the 85% who die, scar-less. Her scars mean she's alive.

But there are little reminders littered along our path.  Every single form she'll ever fill in will involve disclosure.  Every school trip will involve a discussion with her teachers.  Her insurance will cost more than everybody else's.  Children and teenagers with CHD are encouraged to be involved in non-competitive sports.  But this is a very can-do little girl, what if she wants to be competitive and push herself and by doing so push her half heart beyond what it might be able to do.  What club will want her?  What club wants that responsibility?  

And what if she meets a lovely man and walks up the aisle? Will he be like me and adjust his position when she hugs him lest he feels the strange rhythm of her heartbeat?  Will he move his head away from her pillow (like I do) when he hears that not-quite-right whooshing sound amplified in his ear?  What will two pink lines mean to her? The joy of new life will also mean a challenge to her doctors to help her heart beat for two. What if she needs a transplant?  Will someone else die in time to save my daughter? I hope so. 

But those things are for the future.  Medicine never goes backwards, it only goes forward.  We'll go forward too and we'll manage.

For now I'll continue to struggle to shake that I look at her differently. I'll continue to try not feel sad when I see her having fun. I'll try to stop applying love songs to her and shake the guilt that I have 5 other children I love just as much but I don't apply those songs to them. I'll continue to try and see her as a normal child and not her condition.   Maybe that will never happen, she's a package deal.  She's cute and funny and headstrong and cheekily confident.  And she has half a heart with a strange heartbeat, and a brain 'thing' and a face mark and whatever else we find out about her in her upcoming contrast scan.  That's what she is, she was never anything else.  When we chose life, we chose Louise, we chose the package deal.

For better, for worse, in sickness and health...till death do us part.  

John said to me out of the blue a few days ago 'you know, if she dies'll have been worth it' .  That's not his style but maybe he thinks those things too from time to time.  He's her Daddy after all.  Not all doctors become impassive in the face of illness. 

And now I want to tell you why I'm writing this post.


As you know, Louise's heart defect is part of PHACE syndrome, a genetic condition of no known cause.  There was nothing we could have done any differently to prevent it.  There's no guilt attached. There's no we could have...we should have...We didn't cause it.  Thank God. 

A few days ago I read this article.  Don't pass it and read it.  Rubella is on the rise because of lack of adequate take-up of vaccination.  To benefit from herd immunity a population has to have 95% vaccination.  This is not being reached.  The link between MMR and Autism has been debunked again and again.  Every international paediatric organisation in the world has debunked it,(read that link too) the doctor who came up with this link has had his medical licence removed in UK and America.  He was listed as the worst physician in Medscape and is considered to have done untold and lasting damage to disease control worldwide.

And yet the power of rumour continues to hold people in it's grip of fear.  

But PLEASE note:


Nothing we could have done could have prevented Louise's CHD.  
Something YOU don't do today can cause it in your grandchild.

Now imagine your daughter is not vaccinated and she is not adequately protected by herd immunity.  She catches rubella in early pregnancy Her baby...your precious grandchild has a 90% chance of birth defect...blindness, brain damage CHD.  I'm sorry to say but it will be your fault for heading rumour and hearsay rather than extensive medical and scientific evidence.  It'll be your fault for listening to a proved fraudster over people who have genuine concern for people's health.  Do you think your daughter will look you in the eye when she has just handed over her tiny baby to a surgeon like I had is the hardest thing to do...and thank you for your wisdom? How will you feel visiting a baby wired up to every machine you can imagine and whose life and future are uncertain and in the lifetime hands of doctors and know YOU could have prevented it?

I don't feel guilty about Louise. 

I feel sad about her.

Please don't put this on the plate of a baby.