Not a retreat, but a respite for my soul

Ever since diagnosis, not a minute has gone by without fearing death for my son. Living with fear is one of the most draining, terrifying, nightmare-producing, torturing and relentless existence. It is an unending scream in your heart, but as a divorced mother, and one that has no support by the non-custodial father and no family in the area, a very lonely one. The scream stays within. The tears are contained by the "everything is okay" smile. the truth of living in fear is locking in a treasure box deep within the soul- with no place to unravel.

Ever since the day of diagnosis, a single mother abandons everything. The comfort of her bed is exchanged for a hard folding chair in the hospital. The taste of food, all types of food, is concealed by the constant taste of coffee in the mouth to keep us going. The relaxing luxury of a bubble bath is replaced by a race of a shower listening for moaning pain of your child. You don't sleep. You just keep going because you have to. And you don't stop because you know that if you do - you won't start resting, but you will start sobbing until the sobs turn into cries and the cries turn into screams, and your son will hear you - and remember you are the "everything will be okay" mom. So you keep going, exhausted... and one day you decide to come to "Believe In Tomorrow."

When we opened the door of this unit #2 in the Believe In Tomorrow House By The Sea, we were greeted by the colors and the beautiful decorations. The yellow walls, the seashell lamps, the order and cleanliness of the unit, and the space was so inviting. You could smell the peace. You could touch the hope. You could embrace the moment.

For once in two years, I closed the door in a wonderful room of my own with an amazing bathroom, and I let the contained tears flow freely. My boys were sufficiently apart in an amazing and inviting bedroom equipped with nightlights that made them not fear the darkness. This was a safe place for me to let my feelings "unravel." A safe harbor. Not a retreat, but a respite for my soul.

In that master bedroom, the pictures of other families watched over me. I could hear their voices telling me "we understand." And I knew, they knew, and I realized I so much needed to stop. To stop thinking about death, if only for a week, and think about life. Let life hug me like a warm blanket in the freezing snow. And stay still...

What I've seen this week broke all the dreams that my imagination could handle: I saw my son turn into a pirate, a fisherman, a golfer, a speedboat "captain," a seagull, a dolphin, a Coast Guard member, a biker, a mermaid... but most of all I've seen him surf.

My son does not swim, not even float. When I stood on that beach at eight in the morning and I saw his silhouette against the blue sky on a blue surfboard over the waves... and it was real - I could not believe my eyes. Who could have told me a year ago in a hospital room where my son was struggling for his life... that I would see him surfing?

Believe In Tomorrow? I'd better start saying I cannot even believe in this week of a piece of heaven on earth where I've seen my son Living and my thoughts of death have become quieter and the waves of life entice me to press on.

I believe in today. I believe in this week. And the memories of these days I hope will never grow weak, but become stronger as I learn to trust each day to god and believe in tomorrow.

Thank you.

Thank you for sweet dreams within these walls. I can breathe better now. The magic of the dolphins hoping behind my surfing kids is a picture that I will cherish all my life.