What No One Tells You

Words have been tossed at me for years - grabbed onto like life jackets, "once they get his medicines figured out things will be so much better. They were for my pick one: child, mother, sister, brother", "when he is older and more mature things will be better", "I had two children with ADHD" (translate: your bipolar son with autism can't beat my pair or three of a kind), "I'm here for you" or "let me know if I can do anything" (translate: I care enough to offer to do something but I really won't be able to do anything, ever).

What no one tells you, is that if you have a child with a neuro-psych diagnosis - you are in this alone. No overnights, no parties, even parents of other special need kids flee when your child's behaviors make their child look like Shirley Temple.

What no one tells you - that if you strip away the meds while trying other meds - your brilliant, angry child will become more autistic and the aggression will be lessened but the bizarre behavior will always be there and the hope you felt momentarily drifts away like everything and everyone else.

What no one tells you - is that things don't get better - they get a tad less worse but then always return to somewhere between despair and hell.

What no one tells you - is that you start living hour by hour and each hour is a mountain to climb - you no longer hope for good days - you settle for good hours and are fearing when you look forward to good minutes.

What no one tells you - is that you will always have to scrap and beg for every single thing that you want or need or think that can save your child.

What no one tells you - is that sometimes you will just want to crawl into a fetal position and not leave your bed but you have to because you are the bloody parent.

What no one tells you - is that while you are worried about friends and family, North Korea, scary politicians, paying bills and hurricanes - that your own fear and frustration suffocates you from the inside even when you are smiling and making jokes on the outside.

What no one tells you - is that you will delay your medical appointments, your root canal and dental appointments - that you will feel so bad and tired and sick but still somehow you always are able to put that oxygen mask on everyone else but yourself.

What no one tells you - is that tomorrow morning you will get up and do it all over again - that every day is the same battle, the same ups and downs, that hope is just another false promise that you make to yourself.

What no one tells you - is that you will defend your child to everyone. That a family friend who came to dinner after church on Saturday will say - "I hope you didn't pay anything out of pocket because he is worse than ever" and you will have to argue with a 77 year old woman that she can't make judgments like that based on an hour of behavior and that you have enough negativity in your life and you don't need hers to add to the heap. Which leads to....

What no one tells you - is that everyone is an expert and they know far more than a team of doctors and psychologists at a number one rated pediatric hospital.

What no one tells you - is that you will hate yourself for writing posts like this and seem like you are a selfish, whining, ungrateful parent and while you acknowledge this the need to unburden yourself far outweighs the need to give an iota about what anyone else thinks.

What no one tells you - is that while you are denouncing hope there is a hidden part of yourself that knows that it will be better and you pray that bitch knows what she is talking about.