By Heart Mum Marta.
‘We are fine. Until we are not. There are waves we must ride out, days where all of the self care, spiritual growth, leaning on eachother cannot stop “the wave”. There is an invisible weight that rests upon the shoulders of those with a poorly child. A trauma in the deepest parts of a mother or father who has handed their child over for life saving surgeries and procedures. A pain behind the eyes of a parent who has spent hours sat by the side of their child as they fight for their lives. There are memories etched into our minds that creep out unexpectedly and roll down our cheeks as we smile and say “I’m fine”. There is a resistance to the toxic positivity that preaches at us to be grateful, to think that it’s “not that bad”, to be positive, to see that it is worse else where or to somehow believe that everything happens for a reason. There is an anger that rages inside when we are told that our children “look fine” or the lack of understanding infringes upon our right to grieve the life we envisioned for them. A longing for the days where we didn’t worry about our children’s mortality on a daily basis. These moments come.. they hurt like hell… and then they leave and when they leave we pick up the pieces, readjust ourselves and we strengthen up because our children need us. Because life is happening now and we know only too well just how precious that is. We give a silent nod to those around us who are having similar experiences. We look up to the skies and trust that God will grant us many more days/ months/ years and do our very best to enjoy every second of them..and trust that when the dark moments come we are filled with enough light to get through them. But every now and again there is “the wave” and we remind ourselves over and over that shame simply cannot reside there because “the waves” bring with them healing and wisdom and a capacity for the deepest gratefulness for the simplest of moments. Ride the wave. Be okay with the wave. I know it hurts.. I know it hurts. #poorlychildren #heartmum #chd
By Heart Mum Lisa
‘Underneath my vest there is a line right down my chest.
Its a scar some will say and some will say my victory.
It’s beautiful my mummy says because it tells some of my story, one of bravery and holding tight.
I fight CHD everyday and so far it hasn’t got the better of me.
CHD will tap me on my shoulder sometimes but I’ll tap it right on back.
Everyday we’re making precious memories and that will keep me on track’.