Tag Archives: Losing a child

Love to live AND Live to love

Sometimes love hurts. Sometimes love really does NOT conquer all. But it sure makes the journey worth traveling. Even if that means blisters on our hearts from trying to hold on when something else in the universe is forcing us to let go.

Love. Oh love. That word that means so much and so little all at once. That feeling that cannot be justified or reasoned with or rationalized away. That just is. That can bloom in the single instant in the empty space between eyes that lock and souls that connect. Or that can fill your heart with the sight of 2 lines on a plastic stick. Love. It can free you and bind you and make you feel infinitely happy or crippled with despair. Love. That which is so revered and special even the pain of it is to be treasured.

Love. Change one little letter and it becomes live. Do we live to love or love to live? Does it matter as long as those we love live?

Recently my world turned on its axis with a loss in our epilepsy community. Sweet Harper Howard, the daughter of Penny and Dustin Howard, lost her battle with CDKL5. Ironically it wasn’t the seizures that we all fear that took her. Much of the life that she gracefully lived was because of love. The love of parents that turned to hemp oil despite criticism from both the cannabis community which views this as an inferior option and cannabis opponents. But love. That feeling that swirls like a storm when you watch your child make unprecedented progress can drown out all of the other noise. Penny and Dustin stayed committed to the product and path that helped Harper so much. But ultimately Harper couldn’t live on love and she gained her wings. She is free and able, escaping the confines of her earthly body. But I am selfish. I’d rather have her here. Alive and loved. And I’ll never forget the moment that I read Penny’s words that Harper had passed. My hand flew to my mouth literally dropping my phone as my other arm flung out seeking purchase on something. Anything. I was sitting down but I doubled over, my body bent, bowing, under the weight of anguish and despair. The world is a little more muted, colors a little less bright without that sassy, fiery girl. To read more about Harper and her amazing family you can go here: http://www.hope4harper.com/harper-went-to-heaven-january-08-2016/

But love has limits. It can’t conquer all. And it doesn’t heal. If it did none of the children I know would be bound by their diagnosis. But that doesn’t make it worthless. And just to feel it is an experience worth the pain and fear we endure because of it. Because love itself IS the gift of life. And I am thankful to experience love and life even if that means embracing the pain, and sometimes loss, it brings.

That saying…”‘Tis better to have loved and lost”… I couldn’t agree more.

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Thank you Harper for the reminder. You will LIVE on in the LOVE of many.

As for me. Well, everyday I seek out an awareness of those seemingly insignificant moments that make me love to live and undoubtedly I live to love. And will continue to risk the pain of loss to love with all that I’ve got. Fiercely and with abandon. Because we’re not promised tomorrow. Not even when you seem healthy. image