© 2009 Marica

024 – Peeling off the layers

My son Damian has fought off the big ‘C’ – leukaemia, to be more specific. He was only 10 years old when this insidious disease decided to ravage his tiny body. The day of his diagnosis is still a vivid memory for me even after 16 years have gone by. Damian battled hard to rid his body of cancer. Watching him suffer was equally as difficult. I wanted to take it all away from him and I used to wish it was me lying there and not him. The only gift I could give Damian that had any real significance was my undying love and support. I was there for him every step of the way and I still am today.

Damian survived the leukaemia but unfortunately the story doesn’t end there. He continued to have all sorts of unusual health problems until some years later the doctors eventually worked out what was wrong. Sadly this new condition he was diagnosed with has no magic cure, no treatment. So little was known about the road ahead except that the long term prognosis was not good, with only a few known cases surviving into adulthood. The doctors  painted a grim picture of how this might all unfold. Damian was born with an extremely rare chromosome disorder (Nijmegen Breakage Syndrome) and our journey with him was going to lead us into uncharted territories. Once we got over the shock we got on with living. Every day is after all a fresh new day.

Damian lives a unique existence. He relies totally on us and he is unable to live on his own. Some part of his body malfunctions regularly. Our “normal” won’t be your “normal” but that is okay. Every day I treasure my son’s life and there is nothing like those moments when he puts his arms around me and tells me he loves me. He lives in his world. We live in ours. We coexsist. It works.

As you can imagine visits to the hospital to see one specialist or another are a regular occurrence. Today we had a skin specialist appointment. Damian has already had some skin cancers cut out so they are monitoring him rather vigilantly for anything that looks suspicious. I am apparently meant to check his skin regularly, as well, to see if any of the myriad of moles and other skin pigmentations he has all over his body have changed. I find this a daunting responsibility. To tell you the truth I have no idea what I’m looking for and how does one tackle asking their 26 year old son to let their mother inspect their body on a regular basis!

When the doctor asked Damian to take off his clothes so he could check his skin I stood there stunned as I watched my son peel off layer after layer of clothing. First was the padded rain jacket, followed by a thick hooded sweatshirt, then a tee shirt, followed by a long sleeved thermal top, and finally a singlet. The pile of clothes on the floor formed a miniature mountain at this stage and he still wasn’t finished disrobing. Then we discovered he had thermal long johns on under his trousers. He also had on two pairs of thick woollen socks. These are moments that make me smile inside. They are memories I always carry with me and they really help during the hard times.

When I questioned Damian as to why he had on so many layers his response was, “because it’s cold”. He looked at me over the top of his glasses as he so often does. “Didn’t you know that?” was the unspoken message.

He was right, it was cold. In fact today has been bitterly cold. I just looked up the temperature and it is only 6 degrees Celsius outside. Snow is falling in the hills not far from where we live and severe weather warnings have been issued by the Met Office. I cannot believe we are almost into October and it is like winter outside. However, inside me it is a different story. I am smiling that today went well. All is good in our world tonight. I am so happy about that. As for when spring is going to arrive I don’t know. Maybe we should name a new season – how does Sprinter sound?

Manifesto
05. Every day is now. The present moment.
25. Every day your light shines for others to see.
28. Every day you will be tested.

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