[IR_Efrem]

This has all given me more to think about than I really want. I spent a lot of time crying, worrying, and wondering how my daughter would make it in this crazy &*@#ing world, when she was a baby.

SOD/ONH children are typically downs syndrome, have glaring hormone deficiencies (including but not limited to growth hormones), blind or partially blind, diabetic, autistic, and epileptic.

I cried! Would she grow up to be a woman and fall in love? Would she constantly be the but of other jokes and not even be with it enough to realize it? Would her world be dark and not enjoy the simple changing of the leaves in autumn? Would she be 19 years old and a full foot shorter than she should be? Would her life expectancy be 30 years old? Would I have to bury my own daughter?

The mention of this *therapy* has brought back a ton of feelings and here I am with a tear trickling down my face again......

Taking her year after year after year, to see the endocrinologist and having arterial blood drawn, often times more than once and more than one time a year. I was the one holding her down while she was crying PLEASE STOP so they could draw the blood. All to check hormone levels and to find out if there could be a problem.

Her only limitation has been her sight and I've mention about how well she can actually see. I am so proud of everything that she has ever done and accomplished. To hell with this &*@$ there is no way I am about to subject her to the possibility of these types of side effects. I am getting way over emotional right now and I need to quit typing...