Prader-Willi Syndrome

Dear Prader Willi Syndrome. You took my baby and have held it hostage and I'm very angry at you. From birth you've held me hostage as well. Everyday I see you looming over my family and I hate you. You have my son in your ugly claws.. but I will not give him to you. You hear me I WILL NOT let him be taken. I will fight you on every front I know ..so watch out. You do not own him, I do. I am the one that loves him most. I will be there for all the good and the bad and I will love him to no end. My beautiful happy little man is a joy to love.. but it's so very hard day by day. I wake up making my plans and I'm very sure I fall asleep to them as well. These plans are to give my son direction, love, and hope. So you may control him, but guess what?? You don't control me. I will fight and be knocked down but mark my words I WILL GET UP. My son has a mama bear in his corner and I will show my teeth and swipe my claws at you. I will curse you to no end on those long helpless days that promises never to end, all the backwards steps he takes I take with him. I will rejoice in the days that bring joy at making his goals and smile knowing I helped him there. So yes, I will never stop hating you. I will learn to work around you. I will never fear you as I fear my son's future, but not you, Prader-Willi, not you. You see my son is strong and beautiful and loving all that I hoped my children will be and I love him to the moon and back. So, take that Prader-Willi.