ok DD is not like other kids !!!!!

[heartmummy]

my dd is 3 in november she has a serious heart condition, has had 2 open heart ops already will need another one in 2 yrs ( will need a heart transplant in the future) we have a wonderful life together im also a single mum, how do you all deal with the days when you think one day she will have to deal with this!! i dont want to give her the heart ache of knowing the horrible, painful truth. i want to hang onto the pain for her for ever and leave her to have a stress free (normal) life. just having one of those days

[misscutandstick]

{{{hugs}}} for you both - reading your stories of day-to-day life kinda puts prospective on life... still as a mom, it doesnt stop us all worrying about our children, whatever their ailments

i feel for you both and hope that things, however it may happen (there are more things than heaven and earth, than what we perceive...) turn out better than you both could hope for {{{hugs}}}

[heartmummy]

riven can i ask a difficult question?

[heartmummy]

thank youx my baby has hypoplastic left heart (she could be taken from me at any time ) sometimes i wish sh had been born with cp or downs the odds would be in our favor that i could have her longer, its a tricky one!!! i just can get a bit confused about my feeling i hope u can understand what im trying to say? x x

[heartmummy]

thank you sooooooo much i dont feel like a wicked witch now, my dd also sleeps with me and im always putting my hands on her counting her breaths, feeling blessed for every minute with her, my parnter left us when we found out about her conditon he couldnt see the point of loving something (someone) when they die sooner rather than later and yes he did say that!!!! thank you again. sending lots of love to yyour family and dd x x x

[daisy5678]

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[daisy5678]

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[mrz]

I feel for you both.
I work with a little girl who has CP and a few weeks ago she asked " Mrz when will I be able to walk?" it broke my heart so I know how much more heartbreaking it must be for a parent.

[TotalChaos]

[theheadgirl]

People who know nothing about SN often look at Downs (which my daughter has) as the end of the world when they think of such things in pregnancy. Heartmummy and riven, you are going through so much more than the average parent of a child with DS would. Your children are lucky to have you
Itsnotacompetition - I speak for most of us when I say - ??????????

[misdee]

hi heartmummy.

Have you visitied the heartline website for parents of children with heart problems? there are a lot of mums and dads there going through what you are going through.

My dd1 has a non-serious heart defect. its minor, and there is a chance she will outgrow it. but theres always a chance it could get worse as she grows, and may need an op later on to fix it. (minor valve leakage). I havent really raised the issue with her yet, she is 8years old, she knows she has a leak, but doesnt know what that could mean. this is because i want to shield her from what could lay ahead.

My husband, has had a heart transplant at the age of 28. its very stressful for an adult to go through, i couldnt imagine what its like for you to be facing this in the future maybe.

I hope you have a lot of support in real life, as well as online.

i hope today is a better day for you emotionally

[misdee]

ps, i still check dh breathing one year on from the transplant. he thinks i'm mad.

one time, before the transplant, and before the artificial heart, he was asleep beside me. i couldnt hear him breathing, it was winter, and i felt him and he was icy cold. i poked him, and he grunted at me. the releif was amazing but i cried. i also went to get him another blanket.