On Sunday afternoon a friend of a friend was holding a drumming session and given both girl’s love of music I elected to take them both DESPITE my lack of musical talent.  In retrospect I should have sent Mike instead.   Unfortunately by the time the afternoon rolled around, London’s eyes were all glassy and she was fighting quite a cold so I had to leave her behind much to her disappointment. I was fighting quite the headache myself but didn’t want to miss this opportunity for Reilly so off we went.

I had no idea what to expect and truthfully if I knew all the details I probably would not have accepted the invitation for a couple of reasons but in the end it more than worked out. The host had over 12 of these African drums (Djembes) and we all got one to use.   At first Reilly and I shared one and then I was able to set it up so she could bang away as she felt like it and I had my own to keep up with the group.  It ended up being a 2 hour drumming lesson.  As expected Reilly was captivated by the drums and was relatively patient as we moved from exercise to exercise. She did become quite chatty when we stopped playing as if to say ‘please keep going’.    I was worried that she would be disruptive either because of the verbal noises she made throughout or her mere physical presence as a severely handicapped person but I believe the radiant smile on her face was so priceless that she managed to capture the hearts and souls of all the other drummers in the room.  It was truly wonderful to see the sparkle in her eyes throughout the session.

The session for me only confirmed my lack of musical talent. I absolutely love music, especially the base sound of drums but unfortunately my mind is just not programmed to learn a musical instrument.  We did quite a few exercises including repeating notes that were made by the leader and I struggled with the basic patterns of recall. Then when we did a 3 part song and I had to visually look at someone and mirror what they were doing and even then it was difficult. It was fascinating in one way how I am so good in some things but when it comes to music memory work or languages I fall flat on my face or rather ears. That is why I should have sent Mike for he has the musical ear but having said this I have committed to going to the next couple of sessions for Reilly’s sake.  Anyways here is to expanding out of one’s comfort zone.

I would never have signed up for this drumming session if it weren’t for Reilly so here is a great example of a door she has opened for us. Thank-you!


Someone is trying to get my attention

Yesterday we received a message on our home line that Reilly’s Personal Support Worker (PSW) hurt her back and would not be there for her scheduled time 2.30 to 5.30 and that the agency has requested an OT come in to do an assessment before they send in any new worker. WTF?  First we rely on our PSW twice a week to get Reilly off the bus, give her a snack and entertain her during this time. This is the only after school care we have in place due to limited options for Miss Reilly. Needless to say this throws off our work schedules completely but gratefully Mike’s parents stepped in this week DESPITE both of them having different shoulder injuries (not caused by Reilly).  Their support will only extend for this week though.  After I received this message I promptly phoned the agency to inquire further and she said our PSW specifically got her back injury from Reilly. Of course I was shocked for not once did she give us any indication she was having difficulties with supporting Reilly in any which way and possibly could have prevented this from happening. The agency also wished they were told of her difficulties so they could have helped for it means lost revenue for them in the end.  So now we have to wait 1-2 weeks to get an OT assessment and there is talk of using ceiling mounted lifts or a Hoyt lift. WTF? I know it is challenging to lift Reilly out of the wheelchair (she comes home in a wheelchair simply for transportation purposes because others found it too difficult to get her off the bus on her own for although she walks with support she doesn’t go down steps).

I weighed Reilly this morning and she is around 58 pounds. Around only because she is nervous stepping on the scale and she won’t stand completely still. This weight would not be an issue for a normal 7 year old but whenever you are transferring Reilly she is 58 pounds of dead weight and she provides zero support. I personally have noticed that it is getting tougher and tougher to get  her in and out of her car seat, lifting her up into her kitchen chair, off her bathing seat, etc. and I have had 7 years to strengthen my back and arms. Still have some work to do 🙂 So I know it is not realistic to expect a casual worker to have the same strength but there were things we could have done to minimize the lifting/transferring or address the situation before leaving us stranded.

Yesterday was a rude reminder that our lives are different than most others.  That our attempt to live a normal life with two of us working is not going to be easy but it almost seems that with the recent set backs someone is trying to get my/our attention. Well you have it!!!!  I am listening and if I must say so I thought I have been listening, especially in the last week when my husband and I have already decided that it would be our best interest to make a big change in our lives and move to a new city/province that has far more support resources all around.  More on this later.   I didn’t think we needed more reinforcement that this move was the best thing for our family for we are pretty resolute with our decision and have not wavered since making it. But why are we receiving this other message??????  Especially on the heels of attending Mike Dooley’s Playing the Matrix program at Kripalu this past weekend.  Does the Universe want my husband or me to quit my job to take care of Reilly? Expedite the move without having anything else in place? To test our resolve with our decision? Or is this some cruel joke at our expense and entertainment for some audience somewhere out there in the galaxy?  I don’t know.