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this is what my baby smuh wrote about herself, shes so amazing and everyone should know how strong she is <3
Before you see how long this is & click off, please take a moment of your time to read!
My condition is called SMA ( Spinal Muscular Atrophy ) which is a muscle wasting condition. It involves every single muscle in my body, affecting me to have weak cry,weak cough,weak hands,weak lungs,weak heart weak legs, etc. Sadly as I get older, my muscles get worse.
For example when i was 6 i could walk normally with a walking frame, now I’m in a wheelchair all the time. Which can be so frustrating at times!
There are 3 types of SMA. TYPE 1, TYPE 2, TYPE 3!
Type 1 - This type of SMA is the more severe, and the child will live to see only their first birthday. The child will have great trouble breathing, coughing and lifting their heads unaided.
Type 2 (This is what I have) - this is what I call the best form of SMA ;) At the moment I am quite strong, I have trouble lifting my legs + cannot walk but my arms are still working. Not great though! Its different for everybody with SMA, one person with type 2 could be very weak, another cud be quite strong. My breathing can be quite bad sometimes and recently I’ve noticed that my neck has got weaker & sometimes it gives up on me. Quite embarrassing when you’re having a conversation with someone.
Type 3 - Similar to type 2, you just get it when you’re older, possibly late 20’s. If you go on this website it will tell you everything about SMA if you’re interested. http://www.jtsma.org.uk/index.html
As I can’t do much for myself I need a lot of support. Every morning and evening I have carers who help me get dressed and shower etc. Shame they aren’t hairdressers though! ;)
They are lovely! About 8 times a year I go to hospital to get checked up on, just so they can evaluate my current situation & how quickly i am deteriorating.. Sometimes I have machines attached to me. SO HOT RIGHT.
In 2006 I had a major back operation with rods attached to my spine, as I had a thing called scoliosis ( research it,heavy stuff) the surgery took 12 hours & this was done it two stages. The first stage they removed some ribs from my left side & I have a hideous scar which only my friends have seen. The second stage I was opened up at the spine & had rods fitted either side to keep me up straight. I was in hospital for a month and when i came out,Ii was in a lot of pain.
I go to a hospice called Little Bridge House. This can be hard at times, because you meet all age ranges & all illnesses.
Below is what I wrote a few months ago, about Little Bridge House.
So here I am on my own sat at little bridge and it’s 4 in the morning. This is the place I love to be, to think about my future & what will & won’t happen.
The minute this new year began things have gone down hill, I’m getting weaker, every thing I do is becoming more of a struggle, I hate to admit it to myself, but it’s true. Its not just myself noticing it, its my friends and family.
Its hard here sometimes, you see all different types of illnesses, and it eats you up inside when you see that people are so ill.. It hurts when you over hear a conversation about somebody not being well, you feel instantly tense and scared.
There’s different rooms here, named after animals, one room named Dolphin, I cannot step in, it gives me shivers and makes me feel uncomfortable. A few of my friends have passed away in there , so its almost like its their room and I’m not allowed in there.I can’t really explain how it feels when your best friends passes away…It doesn’t feel real though, just like they’ve gone on holiday almost. When I see little babies down here who are ill, it makes me feel lucky, and all i want to do is cuddle them and tell them all will be okay.
I know what I want to happen already,when I pass away. I have wrote everything down, nobody has seen it, because its personal, it’s tucked away in my room & I occasionally add to it.
The quote that keeps me positive is - “If god needs an angel of course he will take our best”
- im getting this quote as a tattoo across my bottom few ribs to remind myself that whatever happens to Jasmine it will be okay and we will make it together and also to remind myself of the pain that she went through and stop anything that makes her feel that bad again <3 i love you baby xx