THE BLOG

Life After Losing a Child

04/28/2015 04:13 pm ET | Updated Jun 28, 2015

Technically, I didn't lose him, I find that to be such an odd term. I know exactly where he is. His body is buried in a cemetery at my childhood church, just a mile or two from my home. His grave, meticulously maintained during his grandparents' daily visits, is peppered with tiny trucks, tractors and superhero figures. I drive by that church every day and even after all this time, its still such a stark reminder. There's a small stepping stone that reads, "If love could have saved you, you would have lived forever." So true. He was certainly loved. Because of my faith, I know his soul is in heaven with someone who loves him even more than I do. His laughter fills my mind sometimes as if he was right beside me. I can still hear his voice, "Fol, fi, sis. Come find me, mommy," and his muffled giggles when I pretended I didn't see him hiding under my desk. He always made me smile, even when he was being mischievous. There are times when I swear I can feel his chubby little hand on my cheek, right where he placed it as he took his last breath. And his spirit, his courageous little spirit, well, that stays with me, imbedded in each piece of my broken heart and woven through the very breath that sustains me.

He would be 13 now. Thirteen? That seems to indicate that he's been gone for such a long time. It seems like yesterday and a million years ago at the same time. In my mind, he's still the two-year-old little boy who I fought so desperately to save from leukemia; the little boy who taught me about life and living; the little boy who shined light into my world-bright, beautiful light.

I try not to dwell on the unfairness of it all or even the what-ifs. I am proud of his life and the changes that have ensued in the world of childhood illness because of it. Great things have been accomplished. I have been a part of some pretty amazing stuff through the efforts of Me Fine Foundation, moments that have literally brought me to my knees. I know his life and death had a profound purpose. But for me, as his mother, it is little consolation. Beneath it all, I am still a mom -- a mom who loved her son and would have given her very life to protect him from harm; a mom who would willingly trade anything to just be able to spend one moment with him... one moment.

Yes, I still laugh, I still feel. I still have goals and aspirations. I enjoy most everyday. I don't get overly concerned with the petty stuff nor do I get tripped up by the negativity in the world. It all has little meaning to me. I only look for good. Its all I have room for. But this is my life, a life without one of my children. It is not easy but it is doable. There is always, always a void. It's a void that nothing can fill. No amount of achievements, charity or good will can replace that huge, gaping hole in my heart. It is only by choice that I get up every day, put one foot in front of the other and make a difference in this world however I can. My love for him helps me love others. My passion for families with sick kids is fueled by experience. My desire to change something for the better comes from a deep rooted need to share his light, his bright, beautiful light.