It's a brave little boy...who loved Thomas the train...
Or a special heart bear...or a frog in the rain....
It's the need to remember...we are all in this plight....
It's their lives that remind us... we still need to fight!
It's in pushing ahead amidst every sorrow...
It is finding the strength to have hope for tomorrow.

Saturday, 21 March 2009

Too many angels

Tonight, I am sad to say there is another chd angel. Life is so unfair. My heart breaks (literally)for her and her parents who very bravely took the decision to withdraw care. Every time I hear of a new angel - whether I happen to know their parents in any way or not I lose a piece of my heart. Because I just cannot come to terms with it.

Since having Ethan, there have been lots of new angels gaining their wings. You know nothing of this world until it hits you smack bang in the face like a car crash.

Heart defects are the NUMBER ONE BIRTH DEFECT. The statistics were 1 in 120 births. That is higher than hyperthyroidism which is what they do the Guthrie test for - that is 1 in 10,000 yet they test EVERY baby for this. Is it too much to ask that we check every baby? I don't think so.

People don't understand the constant worry and battles that comes with our special children, is his colour ok? is his breathing ok? is he puffy? If I wake up before him and I don't hear him babbling - is today going to be the last day that I go in to my sons room to find him alive? who knows but I treasure every moment.

Any belief I had in god is well and truly out of the window, but in its place I have learnt to love and accept and what really matters in life. That and very big bags under my eyes ... LOL

Please, if chd doesn't affect your life - spare a thought for those whose life it does touch.

Rant over. Fly high princess xx

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