I Never Want To Stop Fighting, I Just Want The Attacks To Stop
She has a new diagnosis which means a new specialist. I’m referring to her as “she” because she’s now 16 and old enough to care that I’m talking about her….in a public place. Those of you who know me, know who I’m talking about. She’s been fighting since she was born. First a diagnosis of cerebral palsy, then epilepsy, then cerebral palsy was retracted, then another type of epilepsy, then Asperger’s, then Factor VII bleeding disorder, then Sensory Processing Disorder; now a new diagnosis. None of her diagnoses are “that bad” singularly, but compiled together, they all paint a very bleak picture for an amazingly brilliant little girl.
I’m not sharing the new diagnosis simply because it’s not necessary and all of these other diagnoses have already been shared several times. The new diagnosis is incurable, mostly un-treatable, and will, likely, not cause death or disfigure her; at least not yet. I am sharing this partly because I’m a blogger and that’s what I do; I write. I’m also sharing it because I always get messages and emails from other mothers who needed to hear this. It is unbelievably hard to be the mother of a special needs child….any special needs child. It is especially tough when your child has multiple diagnoses and sees many specialist; none of whom communicate with each other.
This will just be rambling to many of you, but to those of you who ‘get it’ you get it 😀 It is lonely being the mother of a special needs child. It is lonely because you are always. on. guard. You are hyper-aware of everything everyone says or does around your child. You walk a line between telling people why your child acts the way they do and being angry that people can’t just be nice no matter what! Why do they need an explanation? Just don’t be a jerk! Yes, that’s what I want to say most of the time (almost every day).
Not only did we get bad news from the doctor this week, but the speech therapist says that all of the speech therapy she had when she was younger to help with her stuttering; likely caused the speech problems she’s having now…great! As the title suggests, I never want to quit fighting for her; I just want the attacks to stop. I don’t want her to have another diagnosis. I don’t want her to have an even harder life. I don’t want her to be sad or lonely. I just want it to stop.
I am the kind of person who gets very angry and withdrawn when something is going on with any of my children. I say it’s very lonely over here being the mother of a special needs child, but the truth is that, if you offered to help, I wouldn’t let you. I have an amazing husband, 3 awesome kids, a beautiful home and feel guilty, most days, for feeling sad for her or even myself. The truth is, I don’t know what to do most days. The truth is that, even with daily prayer and Bible study, I still feel lost. I have come to the conclusion that it’s okay to feel lost, as long as you keep on pushing. Keep on going. Never stop fighting. Fight, that’s what every single day is for the mother of a special needs child….A. FIGHT. That I’m determined to win.