It is true that whenever a child is born, it is a special time. Every parent will tell you that their lives were changed from that moment on.
In February of 1987, our son was delivered rather than born. An emergency caesarean section brought him into the world. We did not know if he would live or die within hours of that delivery. The medics told us that he only had hours to live. From that moment, my wife, and I were not just new parents; we were parents of a child with multiple and complex disabilities.
We were not expecting this news, and we were terrified. We had so many questions to ask, but our minds were in turmoil trying to figure out what those questions should be.
What? Where? Why?
I recall two questions in particular.
Will he live? and, how will we manage?
The medics answered neither question we asked. Though there were a thousand more, we needed help to understand what they were and what the implications of this devastating information meant for us.
In the many years that have passed, I have often wondered how we could do more to support other parents in a similar position to ours. We wanted so much to turn to someone back then. Someone who understood and would have put their arm around us. Someone who knew how confused and frightened we felt and how we would feel in the coming days. We needed to figure out where to find that person or even if they existed.
Many new parents face the same challenges we did and do not know where to turn. They need help to understand the questions to ask or what help to request. They think they have nowhere and no one to turn to for support in dealing with this new challenge.
Being a parent of a child with special needs, no matter what those needs, is a journey on the road less travelled, many people, friends, and even family will turn away, leaving you to travel it alone.
Encouraged by some very supportive contacts, I wanted to share how we came to terms with our son’s multiple and complex disabilities. How, through controlled adventures, and in particular, a garden, we help calm our son‘s terrors and ease his pain. Allowing him to live as inclusive and fulfilled a life as possible.
One friend told us early on, “There is always a way.”
We try to live by that mantra each day.
We are not medics. We are not professionals. We are simply a mum and dad who does what we can and attend to what needs to be done to support our son. Having to accept that our son’s life expectancy will undoubtedly be short, we face his declining health with a determination to help him achieve something every day, even if that something is just a smile.
Though Marc was expected to live for just a few hours at birth, our son celebrated his 39th birthday this year.