There are far too few career paths for medically complex children who are mobile!
I am a medically complex child who is mobile and graduating this year!
This year has been a paradise of internships, where I've gone to various places only to be rejected over and over again 😭
Since I can perform all my own medical care, I shouldn't really fall under the 'medically complex' category, but...
Once you step outside your usual environment, you get lumped into the 'medically complex' category regardless of whether you can do things yourself or not!
So, if I have to be somewhere with a nurse, I end up having to spend the whole day with people who are severely bedridden... and naturally, the only people I can talk to are the staff...
Also, I have a major condition called Hypoplastic Left Heart Syndrome, so I lack stamina and often have to take time off due to things like heat exhaustion. I've been looking for a place where I could attend a day service two or three times a week after graduation, but... even though they say, 'Two or three days a week is fine!', they then add, 'Well, since this is a ward facility, you really need to come five days a week!'... I want to go to a day service precisely because I can't do that! If I could do that, I'd just work a normal job! I felt like snapping at them lol.
Even when staff tell me it's a waste for someone as capable as me to go to a day service, I just want to snap back and say, 'It can't be helped, there's a rule that a nurse must be present!'
Since there are almost no mobile medically complex children in the world, the reality is that we have no choice but to endure this situation... 😭
I wish the system could be changed so that mobile medically complex children can do what they want to do... but for now, I'm being told to hurry up and decide on a career path, so I don't have the luxury of indulging in such fantasies...
I want to have a celebration once I've decided lol.
Hoping for a future where I can go to the career path I want... I'll get through today as well lol.
