So let’s start at the beginning and catch myself up with the present. I will try not to rabbit on too much and I promise this is the longest one I’ll ever write.
Months and months ago Dad made an appointment to see a Dr because we thought he may have had Parkinson’s Disease. As the weeks and months went on we didn’t really think much about it, and we were just playing the waiting game to even get an appointment.
The weekend of the 10th of August all of my family were home in Gore to see our little sister’s musical. When we arrived Olivia was at the afternoon show and Mum was getting ready for dinner and having our extended family over before going to the night show. I don’t remember where Dad was but he wasn’t in the kitchen where we were all standing. We could tell something was amiss though as there was “something” about Mum. I think it was Jay who asked how Dad was and Mum attempted to be blazé about it but soon broke and filled us in. They had the appointment with the Dr the day before. He took one look at Dad and diagnosed Huntington’s Disease. They took a blood sample and told them it would be two months before we knew for sure. TWO MONTHS!!!! I recognised the name but didn’t have a clue what it meant. Mum briefly described the disease and subtly dropped the bombshell that the disease was genetic, with a 50% chance of all of us girls having it. A few of the symptoms were discussed, the one I clearly remember being, choking on water. There was no time to process any of this as my cousin came bouncing in and a night of pretending everything was okay commenced. At dinner I choked on my water…and exchanged a worried laugh with Mum.
Olivia had not been told.
She made us wait up until she was home from the after party which was actually a blessing as we (Mum, Dad, Jay, Claire and I) were able to talk about what it all means, even though it was at 1 o’clock in the morning.
The next day we spent together as a family but because Olivia had not been told yet there was still this pretence that everything was okay. Before we left Olivia insisted on a sister’s rendition of Tearing out my heart by N’sync, complete with remote control microphones (it’s tradition, not a habit lol). By the time we (Claire, Jay and I) were at Mc Nab on the way back to Dunedin the three of us were in tears. Some things were said that set us off as we started to understand the gravity of what it meant, not only for Dad but potentially for us. The thought was (and still is) terrifying.
It was a rather quiet drive home but one poignant moment I remember is when the song Your love never fails by Newsboys played on my IPod. The line “And when the oceans rage I don’t have to be afraid” really jumped out at me, along with the bridge “You make all things work together for my good”. The tears kept coming and as I write this today they are there threatening to spill over.
http://www.youtube.com/watch?v=SgQ6vWEhH5E
On arrival in Ashburton Jay and Paul rang up to share with us what had been revealed to them at church that night about not being consumed by a spirit of fear but trusting God. It was the first thought I had that maybe it was going to be okay. It was fleeting.
When I look back on that first week there are so many emotions that come to mind. I was ANGRY, SAD, MAD, STRESSED, WORRIED, UNSURE, SCARED and CONFUSED. At the same time there were some special moments when I received messages from my Mum’s two sisters that reminded me that we are surrounded by people who love us, pray for us and will journey with us. Both brought tears to my eyes. Another ‘moment’ I had that week was in our small group for Formation class at Laidlaw. Part of our reading that week mentioned the passage in the New Testament where Jesus talks about coming to earth so that we may have life and life to the fullest. Reading this made me so mad- while Dad has already lived a reasonably long life, the next 10 years are not going to be living to the fullest. If I have this disease, potentially in my thirties (only a few years away), I won’t be living life to the fullest. I know there is going to be so much growth in this area but at this time I couldn’t handle it. Olivia had school camp that week and was not told until the show and camp were all done and dusted but that will be the subject of a later post.
As an aunty described it a few weeks later, “the weekend” turned my world upside down, challenged my faith, and made me question everything I wanted to do with my life.
There’s still much more to catch up on but I’ll leave it at this today. I need to get back to the more pressing issue of writing an essay!