I'm a mom with grown daughter with mylomeningicele/hydrocephalus

Neva - posted on 03/20/2009 ( 1 mom has responded )

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My daughter has to be in a home situation that offers her 24/7 care. At this time she is not happy living in group home setting and wants to move back home with us. She has dreams and goals of successfully getting a degree and a job someday. would enjoy talking with other parents.

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Lisa - posted on 04/06/2009

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Hi Neva, My name is Lisa.  We are the proud parents of a 27 year old that was born with SB and misdiagnosed because his lesion was covered by a skin tag. Lyndon has had over 20 surgeries in his life so far.  He was lucky and did not have to have a shunt.  He does have ortho deficits and incontinence.  He now lives in New Orleans with his girlfriend and is working on his Phd.  Although he is doing very well for himself now we had some very dark times while he was growing up.  We raised him with the outlook that he could accomplish anything he put his mind to and that he would find what was right for him. Maybe a little too much because there came the time when he could no longer keep up in sports and the kids made fun of him at school so he just wouldn't go. I finally fought to get him special permission to take the GED at the age of 16!  He was then a freshman at a junior college at the age of 16 and from there it was up hill all the way. He even spent 6 months on study abroad in Tazmania! That was really scary! There are always ways to overcome hurdles you and your daughter just have to figure out how. I think it is wonderful that she wants to get a degree and a job!  As far as for living at home if you are not able to give her the 24/7 care that she needs then she needs to understand that also.  I lost many weeks of work administering home IV's etc. It is not easy!!! But it can be done!!!!  I am here if you need to talk or hash things out. Mothers with older SB kids unite!!!!!!!!  Good Luck and may God Bless,

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