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SN children

Duchenne muscular dystrophy....need to vent

2 replies

Lofari · 10/10/2018 19:50

For you I try to be strong.
For you I pray every day they've got it wrong.
Some days I'm alright,
I live in the now
Without the future in sight.
But days like today
When I'm just not ok,
The battle you must fight
Comes now clearly to sight.
You're so small and without sin,
How unfair is this world we live in?
Inside me you grew,
It's my job to protect you.
But some battles aren't fair,
And no matter the love that we share......
I know one day I'll have to live in a world where you're not there.

Sorry if this upset anyone
I'm just having such a very low day and I can't share that in real life so I needed to have an outlet.

OP posts:
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Thekidsarefightingagain · 11/10/2018 17:59

Beautiful poem Flowers

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Boo2you · 11/11/2018 01:09

I feel your pain I had a little boy growing inside me last October - we had to have CVS due to Myotonic Dystrophy - the poor little boy didn't stand s chance not only did he have this but he also had Downs Syndrome. Myotonic Dystrophy can have devastating effects for children who are born with it - I've seen first hand the struggles and mental and physical disabilities they have when attending support group meeting and conferences. 1 in 5 die at birth 😢. It was heartbreaking but we opted for a termination for medical reasons at 12 weeks when we found out. I think it would be selfish of me to keep him knowing that his everyday would be a struggle - he would have been due in June. We are not eligible for PGD because we had a miracle DD who was not affect almost 3 years ago while awaiting the PGD referral (total shock as I also have PCOS)! 

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