My daughter’s heart is a ticking time-bomb with a fuse of indeterminable length. It could blow at any minute.
This will be her stalker, prowling along behind her for all of her life. A dangerous killer lurking in the shadows, awaiting its opportunity to pounce should we slip with the medication which holds it at bay. We will never shake ourselves free of its clutches. We can never hope to save her from it. But there is no way we are going to let it have her. At least not just yet.
Carys was born with Cardiofaciocutaneous Syndrome. It’s rare. Less than three hundred unique individuals worldwide share this affliction. Connected by nothing more than a flaw in the development of their genetics. We have never met these people, don’t know who they are, but they are our extended family.
I can still remember the day we were told our daughter would die before she was born. Until that moment, we had not known anything was wrong. Our first scan, we walked into that room full of such joy, such anticipation. I knew it was not good news before any words were said, by the frown on the midwife’s face, and the way she kept pushing the scanner over and over my belly, staring at the grey, fuzzy screen on the monitor with such intensity.
Our baby had a cystic hygroma and foetal hydrops. The prognosis was death by week twenty six gestation. Termination was mentioned, although against the law in Ireland. It would have meant a journey to the UK.
But stealing the life from this much wanted child was not an option for us. She deserved the chance to make something of it, such as it was. We decided to leave it to her, and let nature take its course.
In some ways, that might seem like the easy option, but believe me, there is nothing easy about waking up every morning and wondering if today will be the day your baby dies. Waiting to feel that first movement which proves life is still stirring within you. The joy, the relief, the elation, all tumbled together in the wrappings of fear and desperation.
Day by day, we muddled through the pregnancy, lurching from one medical emergency to another. Not knowing the demon which possessed our daughter, I trawled the internet for information, and realised with horror that there are a multitude of syndromes, not all of them with positive outcomes. I hoped and prayed for just five minutes of life, to hold my daughter in my arms, look into her eyes, and tell her how much we loved her. I needed her to know.
Instead of five minutes, we got seven wonderful, awful, amazing years, and counting. Our daughter’s syndrome has changed our life beyond imagining. It’s a long, hard journey, and it’s ours alone. It’s scary. Very scary, at times. But there are others plodding along similar paths, and we have much to learn from, and share with them.
I’ll share more with you, too, as time goes by. Because fore-warned is fore-armed, and living with a special needs child is not romantic, it is a daily battle. Some days you succeed, and win victory; sometimes, you admit defeat. Often, there is just struggle, conflict, and stalemate. But you keep on going, because you know you have no choice, really. You can never give in.
The battle, and the journey, they are the price you pay for the privilege of sharing the lives of these exceptional children. In return, they give you far more than you could ever expect; unconditional love, and an opportunity to let go of all your preconceptions, open your eyes and your heart, and learn.
Its a difficult lesson, and an elusive one, but certainly something worth striving for.