Reading messages about our Eb children having breathing issues that send them into respiritory failure, blisters that cant be lanced (face & head), blisters that make babies legs shake violently from the pain, babies that CANT sleep more than 10 minutes cos of the pain they are in, operations they MUST have to stay alive, shoes and clothes they all long to wear but unable, parents that cant do anything more than they are already doing and beating themselves down with guilt & blame and wishing they could take all this pain into their own bodies so their children can have a pain free day.
This is just a few issues i have read about TODAY, and it makes my heart bleed. I want to do everything in my power to make all this change and have Eb be a thing of the past, never in our future.
No more babies placed on vents just waiting to die..This isnt what our babies are born for...
In the last 3 months alone we have lost 5 of our Eb babies (that we know about), i cant explain what its like to read those posts on FB ~ Tripp gained his wings in his mothers arms, Seth lost his battle right before the adoption papers were signed, Chloe took her last breathe last night..........Its like i lost my own child & i grieve as if i did.
I often think what it would be like for Tanya & Mark to take Rhys to the park, watch him run around with his football completely bare-footed with no t-shirt on, sun hitting his beautiful peachy skin and covered in grass stains where he slid to save a goal. God that kid loves his football...
What can i do? How can i change the future? I can run a "one women show" and try to educate the world but how can i make them listen and do the same?
My heart feels so heavy just thinking about all of this. There has to be an answer! Im not a church goer and i lost my faith a long time ago, but recently im looking upwards. I dont know what i will find but knowing those babies are pain free, bandage free and having the most beautiful butterfly wings gives me a sence of peace. Their mummys, daddys & families are still with us and i will continue to hold them up.
Happy easter x
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