Fourteen years old, an age I can’t even begin to fathom, but last week by some miracle a Pearsons child turned this magical number. As the oldest living child (that I know of) with Aidan’s disease, this gorgeous young lady provides hope for many of us with children battling this rare disease. It enables us to think that with new technologies and better treatment for our children, we too could reach this remarkable milestone.
I was at concert this week and while watching the drummer I started thinking about whether Ollie might one day learn an instrument. It was one of many times since Ollie’s birth that I have wondered what his interests will be, what occupation he will have, what kind of man he will become. These are thoughts I have never dared think about with Aidan. Perhaps with this young lady’s milestone I could let myself go there.
However, as with any of these momentous occasions I can’t help but let my mind wander into negative territory. I think it’s just in my nature to be pessimistic or maybe it’s my way of protecting myself. I thought about this girl often throughout the week, but I wouldn’t allow myself dwell on the possibility that this too could be Aidan’s fate. The thought blows my mind and brings with it all manner of questions. What would 14 year old Aidan be like? What health issues would his deteriorating body have? Could I emotionally cope with another 9 years of living in limbo?
This week Aidan’s feeding tube came out and it was the first time he truly understood what it meant. He asked if he would really have to get another one and cried when I confirmed that we would indeed need to go to hospital. He knew what the procedure involved and was dreading it. For years I have skipped the chapters in the books that talk about explaining to your child that he or she is dying. However, with every passing year comes more understanding, more needing to explain that he is different, more complications.
There is no rhyme or reason why, despite the same disease, one child will not see their first birthday while another go on to defy the odds. They say ‘little kids, little problems: big kids, big problems’ and I know the longer Aidan lives the harder life will be but I’m still hoping that, like the family of this brave young woman, we’re one of the lucky ones.