Never have I ever

Let's play a little game. But first a little background. A good friend of mine has been sharing her thoughts about what it is like to parent a medically complex child and the amount of advocating that is necessary to ensure decent care.  I was reminded that your average parent has no idea what is involved in raising children who don't fit the mold, either in terms of medical needs or neurodiversity or past trauma. It can be a lot. I will also remind everyone who has to deal with us, that we, warrior moms who stopped caring about what people thought of us years ago, are created by a medical system which is not always set up to help. It can be tiring to be the only one advocating for your child or for care providers to treat your child as a valuable human being. I would urge everyone of you reading to do your own advocating whenever you come across attitudes which convey the idea that any child (or adult) is less human than another.

With that out of the way, let's play...

Never Have I Ever

You get 1 point for everything you have NOT done. I'll tell you up front that my score is zero. Since this is written from my experience it is rather idiosyncratic. I know I have friends who would be able to include things that I have no experience with; things that make my family's current state look like a trip to Disneyland in comparison. Take this as the mild version of the game. Ready? 

1. Taken a child to the ER
2. Lost track of the number of trips to the ER you have made with a child
3. Called 911 to take a child to the ER
4. Fired a doctor or therapist
5. Lost track of the number of doctors and therapists you have fired
6. Told a therapist that your child completely played her on the intake evaluation
7. Fired that therapist when she didn't believe you
8. Had a doctor blame you for the state of your child
9. Had a doctor say to your face that perhaps your child wasn't worth a possible treatment
19. Had nasty notes about you as a parent scribbled in your child's medical file
11. Had a therapist tell you that you had too many children and your youngest child would be stunted as a result
12. Was taught to remove stitches by a plastic surgery nurse
13. Had someone tell you that things could not be as bad at home as you were reporting
14. Cut off friendships because of comments hurtful regarding your child
15. Been told that things must be your fault because you didn't pray hard enough
17. Demanded a doctor take your child off a particular medicine
18. Demanded a doctor put your child on a particular medicine
19. Edited comments about your life to anyone other the closest of friends so as not to traumatize them
20. Had someone tell you that you were allowing your child's behavior, so it was ultimately your fault
21. Raised your voice to an ER triage nurse
22. Had your child poked like a side of meat by an uncaring yet curious doctor
23. Had so many children's surgeries that you and your husband stopped going together and just switched off
24. Been told by the MRI staff that they should have listened to you so as to have avoided the meltdown on the gurney
25. Been asked if you have a family history of facial deformities
26. Begged for coffee from hospital staff
27. Had a bad experience with a company that creates AFO's
28. Spent hours and hours doing paperwork and micromanaging the case workers of the organization that is supposedly "helping" you
29. Had someone assume an issue wasn't serious because you either weren't over-reacting or you were making jokes (I excel at dark humor when in stressful situations)
30. When moving to a new area, put the item "Find closest ER" on the 'need to do immediately' list
31. Nearly created business cards with a list of FAQ's and their answers to hand to the people who stare
32. Went out late at night to buy everyone new underwear because there was no possible way you were getting to the laundry anytime soon

So, how'd you do? 

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