So I feel the need to express some thoughts I’ve had that’ve lingered over my head ever since I was a little kid. I’ve never talked about it really except with a few people, but I feel like they don’t really get it. I need advice, and I would love if you guys just took a few minutes to read this.
I have a brother and his name is Marshall.
My brother is currently living with cerebral palsy and mental retardation brought on from a stroke he had when he was an infant. These things became more and more apparent as he and I grew older and I didn’t start noticing it until I hit about age 5 or 6 maybe younger but I’m not really sure. I started gaining more awareness of my surroundings and social standings, you know the big “AHA!” moment we all have as we get older…. And I realized he wasn’t maturing like I was…. It was more like he got caught at an age and literally stopped progressing, continuing in a vicious cycle of what happened in those months and he’s been there ever since. Imagine a broken record that repeats over and over and never stops, with an occasional additional skip every now and again…. an example being: I remember he fell in love with a rapper, Ludacris who just became popular and he played the song he picked up over and over and over again all day, and to this day he still listens to it whether it’s a recording on his cassettes he’s had for years or live on the radio. It’s been almost 15 years that he’s gone through this cycle day by day.
(Side note) He calls a local radio station and requests it all day and they know him by name now, and I’ve actually heard it on the station when I tune in occasionally and it’ll be playing and it reminds me he’s probably at home with it cranked full blast! Haha. What’s great is they’ve shown my brother so much love and support by bringing their stereo van out to the house and awarding him multiple prizes for contests and it’s amazing how lucky he’s been when it comes to those radio contests he plays on there!
Back to my thoughts.
I remember the first seizure he ever had around me, which by the way is probably one of the most terrifying things a person can ever witness, and it made me feel so helpless all I could do was cry as my mom who is a nurse, and my dad frantically followed the care procedures for seizures when it happened there in the middle of Home Depot when I was about 11 years old. He has them quite often and every two years or so he has to get his medications re-dosed to help him avoid more of them. These things of which I have no idea what he’s on or what the road concerning his meds has in store.
My mom and dad do so much to tend to his needs…. I used to try and help but when I was young I was told to not get in the way of assisting because my parents had control over it and I shouldn’t worry about helping. They told this to me so many times that I started to distance myself from helping if that’s what they wanted…. and like it’s mind blowing that they’ve kept their sanity for the past 26 years because I will admit my brother can be a bit of a handful at times especially if his mood swings are bad one day.
Not only is he prone to seizures but he is prone to losing his balance because of his condition with cerebral palsy. In a nut shell the condition messes with his muscles and coordination which causes falls and injuries if he does hit the floor. Think about trying to walk on floating boards of wood in a lake and that’s what it’s like for him on a daily basis when it comes to moving around. Also fine motor skills are effected making it hard for him to write and use his hands because believe it or not that takes quite a lot of coordination to achieve movement in your fingers.
He’s 26 so that makes him 4 years older than I am and I’ve always been so afraid of what the future has in store for him as well as myself seeing that I am the only other person in my family directly in contact or immediately close if I ever have to step in and assist with anything. He is sort of self sufficient but has lots of needs and requires a lot of supervision, and it seems he needs more and more as we get older. Now as I’ve grown up Ive sort of emotionally separated myself from my family for reasons that will remain undisclosed. But keep in mind my parents raised me with high expectations and I’ve learned a lot growing up because of their methods. It was a rocky road and very hard for them so I don’t blame them for anything now as I look back at everything, but me and my brother aren’t close like we were. We used to be so so so close when I was younger, like he was my only friend for so long. But when things became repetitious with him and other things started playing a role in my life I grew so distant from everyone and I started growing up on my own I feel like I couldn’t recover. It’s crazy to say I almost feel like a stranger to them…. That makes me feel horrible and it scares me even more that I have such a big responsibility to take on with my brother. Not only that but, it scares me for other reasons… I wonder if I’ll ever marry because of the situation because what if no one will want to be with me because of my baggage. I know that sounds dumb but…. Ugh like I feel like it’s a valid concern. And I’m scared I’ll fail at being the people my parents have been for my brother, his caretakers for so many years…….
I refuse to put him in a home because I’ve witnessed and read about the abuse that occurs in the homes for special needs adults and children and I want to protect my brother from that.
I lay here and just want to know if there’s anyone else out there that is reading this and can relate? Or like if there’s someone that’s been in my position and is currently now taking care of a special needs adult and has any advice? I love my brother so much regardless of how close we are and he deserves everything in the world. I’d give him all I have and take all of his disabilities and take them on if I could, because I know it’s frustrating for him as he knows that he has some things that he has to cope with. I just want to provide him with everything I can…. It keeps me up at night because I feel so unprepared and I don’t want to fail him or my parents.
Any advice would be greatly appreciated. And I thank you again for reading.