Saturday, 19 December 2015
Next Tuesday at noon, our daughter Natalie arrives home for Christmas. Jim and I will meet her at the airport and then together, we'll drive around the corner to where Nicholas lives. I know there will be hugs and tears.
Christmas Eve is my mother's birthday so that day, my sister and I will bring food, decorations, and all the accoutrements for a lunch of spinach quiche and lemon cake (Mom's favourites). All of our family will gather to celebrate Mom's 93rd. A day later, Christmas Day, we'll bring Nick home for presents and turkey. I can't wait.
But this year, my happy anticipation is tinged with sadness. Over the last two weeks, two of my caregiver friends have lost their children to disease or disability. Our friends Julie and Brian lost their beloved daughter Kate at the age of 8 after a long and painful struggle with a rare form of Mitochondrial Disease. You can read about Kate's extraordinary and inspiring life in Julie's blog here.
And today, I attended the funeral of a young deaf/blind boy whom I've known since he was a baby. Christian was the foster son of my friend Doris and her husband Paul. Doris is one of those very rare people who have a great talent for loving and managing the care of extremely complex children. I've lost count of the number of kids who have thrived in her care over the years. Christian was a palliative baby when he arrived on Doris' doorstep almost thirteen years ago, but he surprised everyone by surviving and living a rich life full of cuddles, crooked smiles, treatments, surgeries, music (especially the drum) and water play (his favourite treat). Christian's severe disabilities combined with multiple infections finally took his young life.
Christian was non-speaking except for one word - 'Home'. At the hospital near the end, Christian whispered, "Home Home Home" and Doris took the decision to give her treasured son his wish. Christian died at 4:55 am on December 16th at home, surrounded by the people who loved him most during his short life.
Christian understood the majestic meaning of Home. He knew that it represents love, comfort and joy. It's not surprising that it was the single and only word he learned to speak - it is the most powerful one.
This year at Christmas, I am reflecting on my family and on being together at home. I will light a candle for the beautiful children who have passed on this year and I will hug my own son, daughter and husband. This year, we will celebrate the love we have for each other and we will celebrate Home.