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When Do We Get To Be Parents?

Since Bren has been born we have always had doctors or specialists telling us what we can and cannot do with Bren. We've been told how much he needs to eat and how he needs to eat. We've been told what activities and therapies to do with him. We've been told that he has to be on certain medications.

It's never felt like we have had a choice in any of this. We didn't have a choice in whether or not our child was born with special needs. We haven't had a choice in any of his treatments. We haven't been given the freedom to let Bren show us what he can do. We so desperately want what's best for Bren. We trust that the doctors and specialists know what they are doing far better than what we know. But, there are days that I wish we could:

-Let Bren tell us when he is hungry rather than feeding him on such a strict schedule.
-Let Bren tell us how much he wants to eat.
-Let Bren be a kid and not have to worry about different therapies and doing them throughout the day.
-Let Bren go even just 1 week without seeing a doctor or specialist.
-Let Bren be a kid and not report every health concern to someone.

Now, I know that each and every thing we have to do is in the best interest of Bren and that allowing Bren to do some of the things above, could be dangerous for him(like the whole eating thing for example). And I know things can be dangerous for him even if we don't think so because of everything he has going on. So I am not saying we will stop doing the things we are told. But when do we get to be Bren's parents? When do we get to make the call of what is concerning and not? When do we get to decide when and how much Bren should eat? Will we ever get to make those choices?



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