Journey

“One hundred years from now it will not matter what my bank account was, the sort of house I lived in or the kind of car I drove, but the world may be different because I was important in the life of a child”. 

Today's blog is dedicated to Michelle, Jo and all the other mothers of children with special needs.  Your drive, determination and devotion are a lesson for us all.  Becoming a special needs mother is not something one ever imagines or desires.  It is a role which is thrust upon us.  As mothers we love our children and want the best for them.  Special needs children have challenges which they cannot overcome on their own.  They need support to survive, live and achieve.  As mothers we dedicate ourselves to them, to this purpose.  It is the equivalent of working a complex job 24/7, you are never off the clock.  In your life they come first.  At its hardest there are life threatening emergencies and at its easiest you get a breather by leaving someone you trust in charge (and nothing goes wrong).  Second in the line are your other children.  You place yourself third because if you don’t at least attempt to look after yourself you will stumble and fall.  Further along the line are your partner, your job and the members of your extended family.  It is a tough way to live for any mother.  You sacrifice yourself.  It is like a roller coaster ride. At the bottom are negative feelings; anger, despair, frustration, resentment and exhaustion.  At the top you look at your child and realise they are a gift.  They are the one who has suffered and sacrificed.  In spite of this they show infinite courage, love unconditionally and feel joy in life in spite of their challenges.  They deserve all we can give them and more. 

Rory and I are often referred to as “you two”.  It has been good for both of us to have time apart over the last few days.  Thank you to Nana Honnor, Sam and Caitlyn and companion Jonny.  We had potluck dinner with ‘the girls’ on Saturday evening.  Jo and Janine were in fine form showing off their cocktail making skills.  On Sunday afternoon Sean, Colt and I went back to Punanga for additional feral goat control.  Yesterday I went to work with Sean into the eastern hill country to Oha Honey KNE beside Lake Rotorangi.  The forest was cold and damp but alive with fungi, sheet web spiders, bellbird and kereru.  It was a very muddy ride in on the side by side and walk out in the deep slippery papa clay. 

Rory had fun at the Parafed-Halberg wheelchair games at East End skating rink on Sunday morning.  He attended his first session at Riding for the Disabled (RDA) in New Plymouth on Tuesday supported by Jonny.  Rory did well and really enjoyed it.  He didn’t ride for the full time as his trunk/core is weak so he is wobbly.  Regular riding will help strengthen his muscles, increase endurance and help with his posture. 

On Monday Rory had his port flushed and a blood test at the Children’s Ward 2B.  I caught up with Dr Yvonne to discuss a few outstanding issues; Rory’s MRI for Superficial Siderosis, booking a CT to check for osteosarcoma, his low vitamin D level and whether the extensive calcification of Rory’s brain is related to a hormone issue.  Dr Yvonne joked she could offer me a role as staff. 

Rory has worked out at the gym with Dane three times.  Dane had an updated programme for him on Monday.  We had an appointment with Physio Carla this morning to discuss the lack of exercises at home and the gym training.  Carla is going to call in to a gym session to see what is being done.  We swapped Rory’s walker/stroller for one with bigger tyres so he can go more places i.e. outdoors.  We have brought home a demo model on loan but we are unlikely to be able to use it long term or order one via the hospital system. Carla advised me walkers/strollers are ordered for indoor use only and there may be an issue because there is no ‘guarantee’ for long term use due to his diagnosis.  It is likely we will have to purchase one ($655).  I have my eye on an outdoor model with even larger pneumatic bike-like tyres. It will be worth it to keep Rory mobile outdoors for as long as we can. 

We went around the coast on Saturday morning for Colt’s football so called in for coffee with Lars and Christina.  Their son Lenny completed treatment for osteosarcoma earlier this year.  They are also dealing with the fall out of this and trying to find a new normal.  It is great to walk alongside others on the journey.