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| Michael and Jane Danzi Wedding 15th April 1990 |
There have been various times in Cameron's journey when it has become very obvious how different our lives are to those around us - this year is one of those years.
April 15th 2020 was My Marvelous Man and my 30th Wedding Anniversary. We were 24 and 25 years old when we got married 30 years ago. Cameron is 24 years old and turns 25 in October.
29 years ago we were both living independently from our parents, living amazing adventures of mine site and country town life, friends, red dirt, first properly serious jobs, share houses, bosses making us do things we didn't want to do, learning to juggle our money, buy a house, plan a wedding and the rest of our lives together. 30 years ago we stood in front of our families and friends and declared our love for each other and our devotion to share our lives for better or worse, richer or poorer, in sickness and in health, until death do us part. We were adults making adult decisions for our adult lives. We were independent and free to make our own decisions and live with the consequences of those decisions. Most of those decisions turned out alright.
Cameron will never experience any of that. He won't plan a wedding and get married. He wont drive a Ute through the bush on a pub crawl. He won't write job applications or move to the other side of the country away from his family. He won't ponder insurance companies or have long discussions about which bank to apply for a home loan with and which real estate agent is the least dodgy. Nor will he stand in the middle of KMart and argue about who is responsible for purchasing Christmas gifts or writing Christmas cards. The normal things in life that make us adults and give us life experiences to grow from.
Cameron won't experience any of that, Cameron can't communicate effectively or even dress or toilet himself independently. He makes no decisions for himself nor is he capable of adulting, although in the eyes of the law he is an adult. He is forever locked in the life of a dependent child.
Just like when Cameron was young and we watched all the children around us start school, achieve expected milestones and overtake him in their progress through childhood, once again he is being overtaken. We are surrounded by children blossoming into young adults. Young adults blossoming into independent adults, getting married and even starting families. Following the same journey of discovery and growth we all have followed but each in their own independently unique ways.
It's exciting to see everyone grow and find their way in the world. We celebrate each milestone along the way with genuine joy in our hearts but then in the quieter moments the light bulb shines on our reality and I struggle. 30 years ago our lives were an open book of adventures waiting to be written and all I see in Cameron's book is pages and pages with Ground Hog day written at the top.
He is a young man, he should be in the prime of his life, excited about the future and what it will bring - career, partner, maybe children, adventures. Not perfection because no life is perfect, if it was it would be boring. You need life's ups and downs to learn and to appreciate, to grown wisdom and gratitude. But Cameron doesn't get to chose any of his life story and I'm struggling with that this year.
In no way do these feelings eliminate my feelings of joy and pride. I still think he is a living miracle - he is meant to be here, he's fought so hard to stay. I am in awe of the achievements he has achieved and the struggles he has overcome. I see every day the love, compassion and light that he brings to everyone he meets, he touches peoples hearts and souls. I love him more deeply than I can ever describe and don't regret a single sacrifice, sleepless week or the exhaustion along the way. But sometimes you have to be honest with your feelings and this year is hard.
I have to admit, I didn't see this moment of grief coming. Yes, it's grief. I'm grieving what will not be, what was lost and will never occur. I've always know Cameron wouldn't go to University, drive a car, get married, have children, follow a chosen career but there is a difference between predicting the future and catching up to it.
It probably hasn't helped that we have stepped away from our usual routines thanks to Covid 19, it's given me more time to ponder and think. It's also given me time to rest and realize how tired I am. It's been a long 24 years, however I look around and see other special needs parents who have been on their journeys for longer than me and I draw strength from their perseverance and survival. Sadly I have lost friends and watched other's health decline from the stresses of their different existence but there is one thing that bonds us all together - Hope. Hope that one day a miracle might happen, hope that a treatment or therapy will be found. Hope that life will improve and our loved one will enjoy the freedoms we enjoy.
So, for the time being I will let this moment of grief follow it's course and I will let myself be at peace with what it all means. In the meantime I will search for the possibilities so Cameron's book doesn't read Groundhog Day at the top of each page.
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