We all have these weeks. The ones where everything goes pear-shaped and you see to see your life through a microscope as some small organism.
So we have all just come through a nasty bout of gastro, following Sam's debut week at Kindy. Not the best of starts, but hey if you're going to lose weight it's a sure fire way to manage it. Unfortunately Sam's weight loss was not needed and he will need to spend at least the next two weeks eating packets of Tim Tams to reacquire that which was lost. Don managed to escape unscathed, however permanently etched in his mind will be the ever resplendent vision of me in all my sick glory.
And because I have been tired and sick and trying to still be Mum and wife to some degree, I have been a little emotional.
One of Sam's little heart friends Kobe had his Fontan operation last week. the same operation that Sam will need in a few months. I have been watching their updates, praying for them, crying with them and rejoicing in small mercies. When I see the photos of Kobe with the big scar down the front of his chest the drains that hang from his midsection, the pain in his eyes, my own heart breaks. For when I look at him I see Sam and when I hear his family's pain, I feel it too.
'Don't look at it! Don't watch his updates', some may say.
I cannot do what you ask.
You see I cannot just leave Congenital Heart Disease at work and then come home. We live with it day in and day out. We see it take Sam's fellow warriors home far earlier than should ever be.
'Have faith, everything will be OK' I also hear from others.
I tell you, I have faith.
My faith is bigger than locking myself up so that it doesn't hurt. My faith is raw and in your face. It makes me cry and feel and love and roar when I'm angry.
Roooooooooaaaaaaar!
Did you hear me?! I hate CHD and what it does to our kids to our families and our friends! But I refuse to believe that our suffering is for nothing and even these broken, hurtful shards of our life will be made to be something beautiful, given to God, given time.
God did not make me meek, nor did he make Sam that way. God gave Sam a protective and strong big brother in Jack, and a Dad who is tall and strong in heart, that can hold him firm. It is no accident that God gave us a heart kid. It is no mistake that the other Mums and Dads I know have the same path we walk.
Now I know you may be sick of seeing my posts on Facebook about Congenital Heart Disease awareness this month, but for each new person who reads my posts:
another learns about this horrible disease that steals our children's lives
another dollar is given to research; and
another prayer is sent heavenward to bring the day of cure closer.
It is no mistake that my birthday is on Valentines Day, for every year I celebrate life, I celebrate the life of heart kids everywhere. Think of them when you see a heart on your card this Valentines Day.
Sam in Melbourne's Royal Children's hospital after his second surgery, January 2009 (5 months old)
Sam in Mt Isa pretending to ride the bobcat in Mt Isa, Christmas 2012 (aged 4).
You're such an inspiration Nicole. Sorry you've all been sick (bar Don) ... I pray you all regain your strength soon, and strength for the journey ahead as well. Love to you x
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