Matthew Michael Bane was born on 3rd May 2008 at St Michael's Hospital in Bristol, England. He was not due to have been born until the early part of August. He weighed 575g, or around 1lb 4oz; he had severe chronic lung disease and metablolic bone disease.
As I dashed into the maternity ward shortly before 1.30pm that Saturday, I was pulled to one side by the surgeon who told me I was going to have to be very strong, because there was a strong chance that, within the next few hours, I was going to lose my son or my wife, or possibly both.
Nobody realistically expected Matt to survive the night, but he did. And so began the single most difficult, traumatic, period of my life, but one which taught me that I had a hitherto unrecognised inner strength. My rationale was simple; as long as my little soldier, as I called him, could find the strength to keep fighting for his life, then I owed it to him to find the strength to believe.
Matthew spent six months in the Neo-natal Intensive Care Unit (NICU) at St Michael's Hospital, which saw us experience an extreme emotional rollercoaster ride. Finally, on Sunday November 11 - Remembrance Day - Matthew came home. For the next six months, he was on oxygen. We had several large oxygen tanks in our home that he was permanently connected to, and we had a portable one which I would wear on my back whenever we went out.
Shortly before his first birthday, he was finally strong enough to come off of the oxygen and breathe for himself. We celebrated his first birthday with a Civil Naming Ceremony. The early years saw us have multiple visits to accident and emergency and plenty of scares and frights.
Matt had a serious oral aversion, which eventually led to a gastrostomy tube being inserted into him, and a few hernias. It took a few years before he was diagnosed as autistic. Sometimes, we feel sorry for ourselves; we were denied the joy of his birth, and traditional celebration of a homecoming a few days later, and all the other things families with 'normal' children share and enjoy as their child grows; the excitement of the build-up to Christmas; a son who would stare in awe because his daddy can "do magic", a son who sits on the sidelines cheering his dad on playing hockey, and who may pick up a stick himself; a son you can talk to, ration with, and who understands.
But for all that we have been denied, and for all the times when his stubborn, persistent bad behaviour drives us to our wits' end, we never lose sight of the fact that we are so very lucky to have him with us. For all the trials, tribulations and difficulties, for all the tantrums and bad behaviour, Matthew DOES smile and laugh a lot, he sings a lot, and generally appears to be quite a happy little boy. Every now and then, he brings us to tears with a sudden unexpected and rare gesture - it could be a kiss, a cuddle - sometimes it's even just a look - and all the pain and hardship somehow seems to have been worth every second.