Everyone has a story. Everyone has a collection of experiences, wisdom, knowledge, instincts and stories that they have built up over a lifetime to make them who they are. Sometimes one event in life can change that path and your story takes on a new direction and you are forever changed. This is the case with a friend & neighbor of mine Lisa. Lisa is an inspiration and role model to many of us and I’d like to share Lisa’s story about her son Jack……………………………………..
My beautiful boy turns thirteen this week, a teenager! A time for celebration: well yes but I do have mixed emotions. You see grief still creeps into every corner of my life.
It wasn’t meant to be like this. Jack was my first pregnancy, our first child and the first grandchild in both our families. A highly anticipated and much awaited birth that followed the fairy tale wedding. A right of passage maybe? Its hard to remember that time of my life when I was so full of optimism and my future so exciting. These days it is filled with a lot of uncertainty and fear about how my life will look as I relelentlessley battle beauocracy and contemplate having him around as an adult.
When Jack was 8 months old we were to learn that his genetic make up was not as it should be. Jack had a rare genetic disease called Spinal Muscular Atrophy. It is a degenerative neuromuscular disease that causes his muscles to waste away. In one single doctors visit we were to learn that he would never walk, be severely “crippled” (a doctors words not mine) and that he would not likely survive beyond the age of 2.
I remember his first birthday with such fear, paralysed in my thoughts that this would be his only ever birthday. It was a horrible day and I spent the entire week before hand producing a mammoth birthday cake that we would all remember for a life time. Over 100 friends and family came that day to celebrate; it made everyone feel good while I was dying inside, I hated every single minute of it.
The first few years were a rollercoaster of hospital admissions, sickness, loss and painful gut wrenching grief. Infection after infection and no achievement of gross motor or developmental milestones was not only exhausting but very sad. A massive team of doctors, nurses, therapist’s and other support people were gradually built during this time to give Jack every opportunity of reaching his potential. Many still remain on “team Jack” today. In hindsight the time flew past very quickly.
All of a sudden you arrive at milestones such as 13, and I hear people say “wow he is amazing”, you have done a great job getting him here!! And yes I have but I fully believe he is still here today for three reasons and three reasons only:
One he has had good care no doubt about it, there is no time in my life for him to get really sick so infections get managed with great rigour. My nursing background has been a great apprenticeship for this role.
Two he has had a lot of luck, he has not had a bug they couldn’t treat and with kids like Jack sometimes that is just plain good old fashioned randomised luck.
Three and the most significant reason of all is that he has not yet chosen his time. His spirit still very much wants to be here. Jack now belongs to an immediate family of 5 and an extended family with 9 cousins; a lot of water has gone under the bridge since he arrived in our family. Subsequent pregnancies, healthy babies and natural child birth all help heal some of those wounds. As the years pass the grief shifts, its still there, just different. I always say that while I would change Jacks disease in a heartbeat, I would never ever change what I have learnt from him and the perspective it has brought to my life. In the beginning some one said to me that you can only ever feel pure happiness once you have experienced pure pain. They are right. My child with all his limitations has taught me to rejoice in the simple things in life and to not forget to live. I find happiness in the most simple of things that I doubt I would of in my life before the fairy tale wedding.
Life doesn’t always go to plan sometimes the road twists and turns in ways you can not image but that’s all part of the fabric that becomes the tapestry of life. My child with all his limitations and with all the battles and pain I have to endure in order to play my role has enabled my fabric to be rich, colourful, have depth and be strong. This will stay with me forever. I know that one day his time will come and he won’t be here to get me out of bed everyday. One day that weak body will say its had enough. I shudder at the pain of that day and the gut wrenching grief coming back to me again. On this journey you pass by many others who have already arrived at this destination. I listen to them and I hear their stories, it is almost beyond comprehension, yet I also know one day it will be my reality, a very strange place to be.
So at 13 my boy despite all his limitations (and they are enormous) still greets each day with enthusiasm, a positive attitude and a simple understated pleasure that is rare to find. He very simply looks forward to, tomorrow, today, everyday. At 13 he is not like other teenagers, he doesn’t have an army of friends, a facebook page or play football at the local club, but my oh my, his life is still so worthwhile. My journey as his mother an honour and a privilege.