BY BLYTH LORD

My family celebrates Christmas. Until my daughter was diagnosed with her fatal illness, Christmas was only a joyful, fun, happy holiday for me. I loved the decorations, the carols, the cooking, I even loved the shopping. And I especially loved how family came together to sit, eat, share, give, take and be.

And then it happened: a month before Christmas 1999, we learned our beautiful 6-month old daughter Cameron had an incurable illness and would die sometime in the next 3 years. That first Christmas, 5 weeks after diagnosis, I was simultaneously numb and hyper-alert. Heartbroken and yet heart open. My daughter looked like a sugar-plum in her matching hat and sweater on her chubby little body and I wanted to eat her up to protect her from the ravages that were coming. And to protect myself from the pain that was coming.

In a photo of me on Christmas Eve 1999, where I am looking at Cameron, my maternal love and heartbreak are so evident in my eyes and expression: clearly it hurts me to look at this beautiful little person, my own flesh and blood, and know that she is going to have to leave, that she is going to be gone from me, and that I am going to have to let her go.

14 years later, it pains me to look at this photo. I am so sad for the woman in that photo looking at her child. If I could speak with this woman now – if the me of 12/24/ 2014 could talk to the grieving me of 12/24/1999 – I think I would say the following about Christmas:

There is no consolation for the fact that Cameron has an illness that cannot be treated. I am sorry for how scary and sad you feel about this, how deeply sad you are for Cameron herself, and I am sorry for the loss you are anticipating for yourself and the rest of your family. I see that the naive scales have fallen from your eyes about this time of year. Forever after, you will now understand that the Holidays really are NOT “the most wonderful time of the year.” You will experience the contemporary holiday music playing in the supermarket and malls and on the radio as cloying. You will reject the over-simplified message of Joy. You will have urges when you want to punch people in the face. You will see the unspoken sadness that so many carry but about which they do not speak, and you will feel a kinship with people who are grieving, especially during the holidays.

But with all of the losses that lie ahead for you, all is not lost. There is so much you will find. As you help your daughter live the fullest short life possible, you will experience profound kindness from others: your husband, your friends, your siblings, your parents, your in-laws, doctors, therapists and nurses. Because of this, you will decide that the virtue you value most is that of Kindness. You will look to practice this kindness with others, especially those who are grieving for their children, and you will discover profound community with these beautiful families. You will also discover that you love poetry. And you will discover Prayer, which will begin your relationship with God (an unanticipated relationship and one that is especially apt at Christmas time). You will also develop a personal relationship with the concept of Hope and you will come to believe that Light always prevails over Darkness. You will be well and your family will be intact despite Cameron’s physical absence.

Don’t ask me to explain how this can and will be so. It simply is. It is OUR lived experience—Yours and Mine. Ours. Trust Me. Trust Us.