So much more to me...
My story begins when I was nine years old. In the spring I had an allergic reaction to birch trees, which turned into an asthma attack. After that first time, it happend every year around May when the birch trees started to bloom. Every year the attacks got a little worser than the year before, and it got more difficult to solve with medications. Looking back, I recovered after every attack a little less.
When I was 14, I was admitted to the hospital for the first time because of an asthma attack. Due to my asthma, I ended up on ICU two times where they thought I would not survive. Needless to say, I made it! Many more 'normal' hospital stays came but my asthma couldn't be controlled. That's why I went to different asthma clinics in the Netherlands and in Switzerland in total for more than 3.5 years.
When My Life Changed
In the meantime I did go to high schooI, but I wasn't able to go to school all the time so I did a lot of work at home, in the hospital and asthma clinics. I graduated high school and wanted to become a child nurse. Being in the hospital so much I knew how lonely and scary it can be for a child. They discovered that I didn't only have asthma and allergies, but also bronchietasis, and that my muscles and my heart didnt work as it should. To get it under control and better (I couldn't do much and was sick a lot), I went to another rehabilitation center.
There my life changed big time. It went unlike anybody thought. In the centre I needed train to build up my condition, grow better and stronger, something I did in every clinic I had been before. Everytime I build some condition up, I got really sick again and lost it all, so I needed to start from scratch again. This time it was no different, I worked hard and with their help I trained hard despite my previous experiences that were not good.
One day in October 2007, we were working hard on my leg muscles. That night I wanted to get out of bed to put on my pj's. (I was in bed because I didnt feel well at all). The moment I put my weight on my legs, because I wanted to stand, I fell to the ground, my legs couldnt hold me anymore. I wasn't that shocked in the beginning, I thought with rest it will heal. It didn't and so my life in a wheelchair began. Of course we did a lot to try to heal and get the strength back, but I discorved that when I trained hard and pushed my body to the max I lost strength instead of gaining it. Even after a lot of research in hospitals, we still don't know what disease it is. A muscle disease that makes me lose strength when there is damage from overload. I'm now at the point where I have lost all strength in my legs, I cant walk or stand or move my legs. The disease isn't just in my leg muscles but everywere, I need to be careful with training and normal day stuff. When I feel pain and notice a little strength lost, I need to stop and rest so it can heal. Untill now I have lost some strength, but my upper body strength is still pretty oké!
My lungs are still messed up every now and then, pneumonia is common for me. Due to a pseudonomas infection, bronchietasis and food allergies, I've been using tubefeeding since January 2013. First two years trough a nose tube because I didn't want it and I was sure I could fight it so one day I didn't need it anymore. My nutrisionist told me over and over again I couldn't do without it. I tried to skip the nightfeeding but felt horrible after not taking it. I realizeded this wasn't something I could fight, no matter how hard I tried. So in December 2014 I was ready to place a more permant tube called a peg button. When I go to bed I hook myself up to the machine and I get a bag of extra 1000 calories at night. I still don't like it that much, but it keeps me going and that's the most important!
The truth is this isn't were my story began. My story starts 9 years before all this in March 1987 when I was born. It is just a part of my story, and it made me who I am today - it isn't who I am. Thank God there is so much more!! I have an awesome, amazing family: my parents, sister, brothers, brother in law and adorable nephew! I can't tell how much I love them and how blessed I feel to have them!
Thankful for Life
I didnt become a child nurse, but I decided to work with childeren- now I educate them! (Kindergarten, Primary School) It's not 'just' a job to me, it's a passion!! I enjoy it so much because they rock my world. I love how their minds work and how they see the world. They don't care I'm in a wheelchair, to them I'm their teacher and thats what they care about. Yes they see it, they ask funny kid questions sometimes, other times they want to sit on my lap, or race me on the schoolyard. Kids are everywere in my life and I love it! I teach Sunday school at church to the neighbour kids (one special girl who I teach bible class, and of course my nephew!!) I can drive my own car, which makes my very happy! I love the summer, reading books, being outside, workout (If I can) spending time with friends and my family. I really enjoy going out in nature in my batmobil, (my wheelchair with moutainbike wheels, freewheel and smartdrive) last year I got a smartdrive that really changed my life, I can go places and 'hike' where I couldn't before!
No, I don't work fulltime, I don't always have the energy or the health to do it all, but how good are the moments I can! I believe in always looking on the bright side, seeing the good things, being positive. Not everyday is a good day but there is something beautiful in everyday, even on those dark days if you want to look for it. Being close to dead more than once makes me appreciate life that much more, I want to enjoy every bit of it. I do have my doubts, struggles, fears, and insecurities. I don't like how some people just see my disabillities or just my wheelchair because I am so much more!
I am a child of God, a woman, daughter, granddaughter, sister, aunt, friend, teacher, I am me, and I am alive!