Rett Syndrome has introduced us to a lot of people that we wouldn’t normally have met, including multiple Occupational Therapists, Physiotherapists, 3 neurologists to date, a Geneticist and his team, an Endrocronologist, an Orthapeodic (specialist), 6 different teaching aids, several Speech Therapists, an Early Interventionist, a couple of Community Access Care case workers, numerous teaching doctors, nurses, EEG, MRI specialists, and the list goes on and on. When you stop and list all the different people that have been involved in Reilly’s 7 years of life so far it is staggering. Especially for a little girl who can’t communicate with us to express her fears of ‘another’ visit or to hear all sorts of information be discussed in front of her without her being able to contribute to the conversations.
On Monday, the first day back from the Christmas holidays, Reilly had a new bus driver in the am. I asked the new guy ‘Alex’ whether he was just subbing or was there a change in the guards so to speak. He said the previous bus driver resigned over the holidays and he is ‘it’ until they find a replacement. This will be Reilly’s third new morning bus driver this year. The first one was fantastic but wanted more hours so the bus company had to switch the route to accommodate. The second bus driver was very good too and always made a point to first acknowledge Reilly and then me, even though I am the one that said good morning first.
When I saw the new bus driver my heart sank for it was just another change we all would have to get used to. It is funny that it affected me so much and although on the surface I will claim my angst is really for Reilly and wanting limited change in her life, I think it is more to do with my feelings and ability to handle change these days. Earlier in the fall, our Personal Support Worker, lost track of what # she was, phoned into her agency claiming she hurt her back supporting Reilly so they ceased all support to us until they can assess the lifting situation with Reilly. We really liked this PSW and was taken aback by the sudden issue when she gave us no indication she was suffering. In the end we had no support for Reilly for 4 weeks, it took quite a toll on our work schedules and overall family schedule. Of course add this to the lack of sleeping and you have a perfect cocktail for insanity.
A few weeks ago we finally were given the clearance for a new Personal Support Worker. We said we would still welcome the one from that ‘quit’ as she got along quite well with Reilly and vice versa but she didn’t want to come back. Confused about the PSW’s decision and worried we would not get a decent PSW we were guarded when the new lady showed up. Almost instantly I fell in love with her though (as Reilly’s support worker of course) and made a comment that the Universe can be cruel at times putting us through a month of agony and then giving us a resource that is proving to be the best Personal Support Worker on record. The only negative is that she has now set one high benchmark for all others to come.
It will be interesting to see what affect the revolving door of therapists, doctors, and support workers will have on London later in life. Although it doesn’t affect London directly there is no question she is exposed at a level that is leaving an imprint on who she is and will be over time. So far both girls are proving to take everything in stride and thank goodness neither one of them has issues with the constant change in their life. I guess as hard as these changes are on me as the parent, my job is not to let it show that it bothers me and to paint the picture that every new person that walks into our life is a wonderful opportunity to learn something new. Oh boy.