Mad at EDS

Well I am officially mad at EDS.  I have always always took pride in the fact that I never (and would never) let it interupt my time with my nephew. (I also realized I have never really mentioned important things about my nephew which I will at the bottom).  Even if I was sick, I still went to his activites.  I have never missed a grading for his karate, even though one time I had the flu and couldnt keep anything down (stayed near the bathroom for that one!) and have also been on crutches during one and many various other minor health issues.  That was all until today.

A week or so ago, K brough home a permission form to go to see the new Disney movie 'Chimpanzee' with a bunch of the intermediate and senior classes at the theatre in town.  They wanted some parent volunteers so I asked K if he wanted me to go and he definitly did so I signed up.  Yesterday mom went in and talked to the teacher about it and found out that I could ride on the bus and go as a chaperone instead of just a 'parent'.  Kyler was excited and I was so happy to have a field trip that I could actually do (can't do the outdoors type of trips or anything physical so am limited to what trips I can go on).

Last night we were at his karate class (he got a stripe :) ) and I went to move over on the chairs to get a better view of him and my right knee shifted at the same time as a muscle spasm and subluxed pretty badly.  Mom was very worried and I apparently went white.  Of course I didnt bring my purse so even if I wanted to go to the ER to get it looked at (and documented), I didn't have my health card to do so.  I also didn't have any of my pain medications or even some advil to counteract the swelling.  Once class was over I managed to get up and get to the van so we could go home.  I got that lovely trifecta of pain - nausea, cold and sweating for the entire ride home.  We got home and I got changed and headed for the couch where I put ice on and off it for the rest of the night.  Mom looked at me before I went to bed and 'told me' that I was not going on the trip as I couldnt sit in the theatre seats that long and being on the bus (with steps) wasn't a good idea. I reluctantly agreed.

So today mom went in and told K's teacher about what happened and she was slightly shocked at home much damage I could do without actually doing anything.  Mom told her that this was why I couldn't normally volunteer for things as I never knew what was going to happen and always hated to have to cancel.  K's teacher was sympathetic and told mom to tell me to not worry as there would be enough parents at the show so she wasn't going to be short on volunteers.  I still felt horrible, not because I wasn't there to help the class, but becasue it was something I told K that I was going to do.  Mom talked with him this morning about it and he seemed okay with it (he knows the basics of EDS and also lives with me day to day to see the actual living with EDS) but it still bugs me.  I was almost in tears when he got home and I apologized to him.

This was one aspect of my life that I refused to let EDS take over.  He had a pretty crappy beginning to life and I was never going to let EDS define anything about our relationship.  To those that don't know the breif story is that when K was born he lived with his mom until he was 6 months old and she had a nervous breakdown (she has schizophrenia and now lives in an assisted living complex as far as we know) so K lived at my parents house with my brother for a few months that summer (I was also at home because it was school break as well as I had just had major knee surgery) and after a few months children's aid thought he could handle K alone so my brother got custody of him when he was around 8 months.  I never liked this set-up and knew from day one that at some point my parents would have custody of him (during the time at our house my brother was stealing my pain meds so I knew something was up).  I went back to school and things seemed 'okay'.  I got a call the next march from my mom letting me know that everything was okay but K had been removed from my brother's custody and thankfully was now in my parents custody for the time being (we had discussed this outcome before and my parents said that the main goal was we never wanted K to go to foster care and that my parents would do anything they had to do so they could get K).  K has never left our care since.  Both parents gave up their rights and were glad that my parents had custody so thankfully it was an easy case with no disagreements.  When I finished school and my health declined so fast I was fortunate enough that my parents had no hesitations about me moving back in full time, it was just expected and actually made things a lot easier as at that time both parents worked full time (both are retired now) and they had K to look after so I stepped in and did what I could to help out.  So that is where we are now, my parents house and they have custody of K and I live there as I could not manage on my own.

As I learned of the EDS I immediatley knew I wasn't going to be having kids but realized I lucked out and get to have the same experience and love with helping to raise my nephew.  Just sucks that after fighting so hard EDS finally won out today.  I will be doing everything I can to make sure that it never happens again!!!