Journey

The threshold for sympathy and TLC is set pretty high in our household because of what we have been through with Rory.  We have seen children endure harsh procedures and treatments, with support.  They do not feel sorry for themselves or let it stop them living.  They retain their zest for life.  In our family a person needs to have something significantly wrong with them to warrant nursing care.  There have been a range of minor ailments over the last month, which have only received a cursory glance; toothache (Sam), fungal infection (Rory), cold (Colt), hay fever and burnt fingers (me).  Although Colt did score three days off school by quoting the Covid19 rules about how you have to stay home if unwell, especially if you have cold or flu symptoms.  Sean qualified for a moderate ailment this week.  On Thursday afternoon he had key-hole surgery to repair an inguinal hernia.  He got the hernia in May helping Rory out of the bath before we had the bath lifter.  Sean was lucky to get it repaired promptly under ACC.  He has spent the last couple of days dozing on the couch and he is moving around the house like an old man.  A couple of the blokes from work messaged to check on him.  You could almost feel them cringing about a procedure so close to the male privates.  Manager Steve likened my care to Nurse Gladys Emmanuel but Sean isn’t this lucky.  I don’t have the uniform, large breasts and soft sympathetic bedside manner.  I make sure the boys get the medical care they need, take their medication and have sufficient rest.  Then I get them moving and keep them active.  My friend Jo said “you’re a hard woman Leigh”.  If Rory can get out of bed (with support) to walk the ward in Starship the day after major brain surgery then we are not going to behave any less. 

On Wednesday afternoon Rory and I gave a presentation to the Inglewood Branch of the Red Cross to share Rory’s journey and thank them for their generous support over the last 11 months.  Hearing Rory’s journey in its entirety, even as a summary, is a lot to take in.  Rory spent an hour with Natasha in Inglewood so they could start to get to know each other.  Sean took the boys to Jiu Jitsu on Wednesday night and there are some great photos on the Parafed Taranaki facebook page of the boys putting the blokes in a head lock.  Rory continues to work out with Dane at the gym and his strength and stamina are improving slowly each week.  On Friday I spoke with a Professor at Auckland University who is New Zealand’s expert in movement disorders, and a Neuro Physiotherapist about specific rehabilitation for Rory to reduce the impact of the cerebellar ataxia.  I will be pursing this avenue over the coming weeks.