This time of year always brings forth emotion. Mine has been brewing for a bit, but with only two sleeps away from Santa, it’s now here. Our kids are SO excited. Every morning Trey wakes up and asks if Santa came last night and every morning Avery races for the advent calendar to count how many more days until Christmas. With this year coming to a close, thoughts of how the past year went and thoughts of how next year will go, come to mind.
Every day before I meditate I contemplate 4 preliminary practices: 1. The preciousness of human birth, 2. Impermanence, 3. Karma, and 4. Samsara or the cyclical nature of life. I think about how fortunate I am to have had the opportunity to birth three children. That Ryan’s mom gave birth to Ryan, helped to raise such a caring human being, and that I got to meet him and become his life partner. I am grateful to my grandparents who survived (and I mean survived; Omi fled Vienna from the Russians who were raping and killing Austrian women, and my grandpa escaped death during WW II when the family photos in the chest pocket of his shirt protected his heart from the schrapnel that exploded in front of him) the war. I am grateful to my parents who made it possible that I am here today with the capabilities I have. I am grateful to my sister, my extended family, my friends and my community, Trey’s doctors and nurses, and all those who have shaped me into the person I am today. I could not be here, doing what I’m doing, without the support and love of many many people. That’s what I think about when I think of the preciousness of human birth.
When contemplating impermanence… well, I imagine you can guess. Trey is 8 year old. He’s almost nine. In severe MPS years, that’s like 80. This past year I had my first experience of finding out that a child I have met, who is Trey’s age, passed away from MPS II. There are other boys who were diagnosed around/with Trey, whose families have decided against necessary surgery because the surgery is just too risky. These are people who share my heart with me. I have another friend whose husband passed away last month. She has a son with MPS II and a daughter. Impermanence. Although MPS families may have to face this more often, impermanence is a reality. It doesn’t escape any of us. Next Christmas will not be the same as this one. Today won’t be the same as tomorrow. Contemplating impermanence is not meant to depress us, but motivate us. I intend to make the most out of today and every day. Especially at this time of year, I am grateful to be reminded of impermanence so I can love and hug and be present, free of regret.
With karma I think about how to increase awesomeness in the world (random acts of kindness, which are LOADS of fun) and with samsara, I think about how I can break my cyclical bad habits.
It’s not an easy path, I still get frustrated and then get frustrated with my frustration, I have said things that are not mindful, and I start to dwell on those failures (though through meditation I have learned to recognize those thoughts that can play on repeat over and over and over, and let them go). The cool thing about this path though is that patience includes ourselves! So, I find patience for myself and get back up and start again. Every moment is a chance to begin anew. I also recognize that before Trey was enrolled in the IT trial, I may not have been able to get on this path. For four and a half years I was in fight or flight mode. I worked to find peace during moments, but I wouldn’t have been able to contemplate impermanence or entertain complete inner peace without being crushed by overwhelming emotion. I just couldn’t go there. I am grateful that I am in a place now where I can.
I am also liking this path because at this time of year, although I have not been perfect, I have done my very best to make this world a better place, I have enjoyed life, and I am grateful for everything and everyone I have. This path feels awesome.
And last but not least, I have a wonderful bit of news for you: this past week our MPS II Research Fund received over $5,000 in donations. This amount of thoughtfulness and generosity gives me the fire I need to remain on this quest to find a cure for MPS II. Ryan and I, and all the other families affected by MPS II, are not alone. There are hundreds of people standing behind us, giving us the support we need to keep on going. Thank you.
With wishes for a holiday filled with contentment and love,
Deb
