Journey

Old posts periodically appear on my Facebook page.  I feel happy to remember the good times we have shared as a family.  However, I also feel sad as they enable us to ‘see’ the progressive deterioration in Rory’s functional ability.  No longer can he walk to the wild places we used to go, swim competently in the ocean or tuck into a pizza.  I rarely look back.  It is too painful.  I know he, and we, have come a long way and I am grateful.  We continue to live in the moment and look to the future.  I continue to try and secure opportunities for Rory so he can feel joy and achieve success. 

It has been fairly quiet medical wise this fortnight.  Rory received his 14-week Reandron (Testosterone) injection from Nurse Cheryl.  It was the first time Sean has been present.  He was shocked at the size of the needles, and that the dose had to be halved and given via two injections.  Rory had a blood test to check his hormone medication is at the right dosage.  OT Coralie dropped us an indoor power chair to trial and ACC Physio Josh visited.  There have been opportunities to socialise.  Rory and Colt attended the Canteen Taranaki catch up, they ate dinner and made juggling balls with the other teenagers and young adults.  There is incredible value in Rory (and Colt) being able to hang out with others who are walking the road they are.  Rory has been working hard at NP Men shed with Peter making egg holders.  Peter has graduated from the moon boot so is a bit more mobile.  While Sean, Colt and I slipped away for a few hours on the maunga Rory hung out with Shelley.  They headed south for a visit to Stratford to the market and shops and did some cooking at home.  It was lovely to get together with our family for lunch for Nana Honnor’s birthday.