Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 <How do you acknowledge the awful and still work towards a miracle?> Yeah, it is hard! Just know that you are not alone in this. We're all out there doing it too... celebrating small improvements, weeping with frustration at the backslides and then pushing on again to more gains. I know what you mean about the research etc. It is exciting but also time consuming and full of steep learning curves and has a momentum all its own. I get information overload sometimes and fall in a heap where I wonder if the results will be worth the life I spend trying to achieve them. I don't even know that I'm aiming for " normal " any more. I just want him to be less vulnerable and more independent! But that's part of who I am now and I can't go back and pretend ignorance and that " Dr knows best " because a lot of the time they know **** all!! So yes, we do change as go through this journey, and that's just how it is. Big Hug to you , you're doing a sterling job as ph's Mom! Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2003 Report Share Posted December 15, 2003 Hey ! For me, " awful " has been revisited more than once in the last 9 1/2 years. I have a great cry, " pick myself up, dust myself off, and start all over again " ... Do not give up or lower your expectations, or ph will give up and/or rise only to those lowered expectations. My son was not expected to even be toilet trained after his seizures and stroke like episode after his shots. I think I have told you, but I will remind you that he is a fully mainstreamed Honor Roll kid who plays 3 team sports, rides a horse beautifully, has excellent manners, morals and friends. His project placed 3rd in the Social Science Fair for his school today. Every good parent has doubts about their parenting every now and then, and worrying about their child(ren). You are an awesome Mom! You have busted your hump to find him the best possible doctors You feed him a very healthy diet, supplements, etc. #1- you love him & want the best for him even when life is dealing you lemons Take care, <How do you acknowledge the awful and still work towards a miracle?> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Thank You. Honestly, it has been those Moms willing to share their experiences both good and bad that have been the most helpful to us. Your encouragement, and all the other wonderful people in this group that have sent encouragement and/or prayed for us, I Thank You. I wrote today in another post that today was a good day. Just typing in those awful sentences a couple of days ago was a relief for me. Thank you everyone for letting me vent. Re: Re: Re ph update Hey ! For me, " awful " has been revisited more than once in the last 9 1/2 years. I have a great cry, " pick myself up, dust myself off, and start all over again " ... Do not give up or lower your expectations, or ph will give up and/or rise only to those lowered expectations. My son was not expected to even be toilet trained after his seizures and stroke like episode after his shots. I think I have told you, but I will remind you that he is a fully mainstreamed Honor Roll kid who plays 3 team sports, rides a horse beautifully, has excellent manners, morals and friends. His project placed 3rd in the Social Science Fair for his school today. Every good parent has doubts about their parenting every now and then, and worrying about their child(ren). You are an awesome Mom! You have busted your hump to find him the best possible doctors You feed him a very healthy diet, supplements, etc. #1- you love him & want the best for him even when life is dealing you lemons Take care, <How do you acknowledge the awful and still work towards a miracle?> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 16, 2003 Report Share Posted December 16, 2003 Thank you, just when I think I'm " over it " I cry again. But these are good tears. Not whoa is me, but grateful tears. Encouragement is so valuable, not a pat on the back, like my Mom tries to give (bless her for trying), but real encouragement, from those that know. Thank You for the hug. Re: Re ph update > <How do you acknowledge the awful and still work towards a miracle?> > > Yeah, it is hard! Just know that you are not alone in this. We're all out > there doing it too... celebrating small improvements, weeping with > frustration at the backslides and then pushing on again to more gains. > I know what you mean about the research etc. It is exciting but also time > consuming and full of steep learning curves and has a momentum all its own. > I get information overload sometimes and fall in a heap where I wonder if > the results will be worth the life I spend trying to achieve them. I don't > even know that I'm aiming for " normal " any more. I just want him to be less > vulnerable and more independent! But that's part of who I am now and I can't > go back and pretend ignorance and that " Dr knows best " because a lot of the > time they know **** all!! So yes, we do change as go through this journey, > and that's just how it is. > > Big Hug to you , you're doing a sterling job as ph's Mom! > > Fran > > > > > > > Quote Link to comment Share on other sites More sharing options...
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