This little guy is a deep introspective little man. Last Thursday we 'celebrated' the four month anniversary of Josh being released for sick kids. He's had many ups and downs since then, though happily more ups than downs.
Tonight he came to be for a snuggle (increasingly rare as he ages).. He sat in my lap and I hugged him, I whispered that I love him, then I said ' buddy, you are awesome. Normally this garners smiles... Today he didn't act as I expected. Today he looked up at me and said ' no Mummy. I'm just different'
It's entirely possible to actually have a million thoughts in just a few short breaths. It happened to me tonight. Every time think it's further in his mind, hoping he's forgetting and the ugly truth comes back to taunt us.
'Why do you say that Josh?
He looks down at his hands and slowly lifts them, placing the carefully over his heart. 'My heart is different'.
These are the moments in life, the ones where words count more than ever.
On December 2nd I posted a video with many photos of CHD survivors . I pulled the video up on the screen and we watched it, frame by frame, faces of survivors filled the screen. Josh's eyes watches intently, watching in the silent way he has, just taking it all in. Each face we saw I pointed to and whispered 'he has a heart like yours, or, she has a heart like yours. How can you be different when there are so many just like you. You are not different, you are special! The video ended and Josh looked me, he eyes were misty but I could see the doubt was leaving his eyes... I made him say it 'I am special!
We hugged for a bit while we talked about his awesome, miraculous heart.then I had to ask 'did someone tell you that you are different Josh?'
His answer... 'No. I just know. My heart gets tired sometimes Mummy'
Oh how I pray these are just words... Words uses to describe a year of pain and illness and not present day realities. Hearing these words send chills down my back, fear fluttering through my stomach.
I wouldn't change one second of the time we've had with our son, not one second. However I feel I could write a book on the ache that the doctors can't warn you about because though they see it countless times in a day they can't possibly know what it's like to live with this on a day to day basis, in a child you would yourself die for; they don't know about the fight that continues day in and day out.
For now, he's safely in bed and this information he's given me will tucked in a private 'pain spot' in my brain. But my guard is up, I'm on watch duty now.
Living with a congenital heart defect has the power to consume your life. Were it not for my faith, I think my strength would have failed long before now.
My prayer will be that this tired heart he speaks of is in the past tense, but if it's not I pray we have the wisdom to discern.