The Book of Me

Sibling grief :It's toll on the other children Children are incredibly resilient. My son taught me that during his entire journey with brain cancer and now my daughter is blowing me away with her brilliant insight and maturity in handling the death of her brother Xavier. Two years later and she is not afraid to tell you she is still grieving. In her words, grief -- it's there throughout your life. I couldn't have said it better myself. In this heartfelt video, she honestly shares her intimate feelings about her experience and the big question: Am I normal? https://youtu.be/KTjQSWG38Qg

Xavier, I miss everything about you. Some days have been easier but then there are days and weeks where it’s really hard again. It hits me again like I almost don’t believe it’s real, and I question is this really my life? It's a reality I am not willing to accept yet. I want you in my life ...physically. I want to see my twins grow up together and not wonder at each milestone what you would have looked like or wanted or achieved... the list goes on. I hate pretending and I hate that people don’t understand. They don’t see how I miss you from the moment I wake up to the moment I fall asleep. Even though we have new routines now I still remember and yearn for our old ways. When I had two kids to get ready for school. When I had two kids to put to bed. Two lunches and two birthday presents. Until I don't and I go a day where I was so busy that I didn't think about you. And then the guilt... the fear that I may actually forget you in our day to day life. I try to be po

What a bummer... I didn't think I would live this long without you, but I did. Soon it will be the second anniversary of Xavier's death and what should be his 10th birthday. As we approach this emotional milestone, I feel different. The first year was shock, intense acute grief, guilt, excruciating heartache, disbelief, anger and days where I wanted to eat junk and hide under the blankets with my boxes of Kleenex for as long as I could. That first year and much of the second were really all about survival. To be honest, I really didn't care whether I lived or died. And my actions reflected this sentiment. I stopped taking care of myself. I stopped eating properly, I became sedentary and stopped caring that my blood sugars and blood pressure were on a constant roller coaster. Managing the barrage of emotions wasn't even a consideration; I was grieving. I was trying to survive on a raindrop's worth of life energy. And just getting out of bed everyday to pretend I

I am fighting with time again.  The more time that passes since Xavier's death, the further away I feel from him and the more pain I feel. "They" say it gets easier with time, but I call bullshit. No one who has lost a child says that. It changes, yes, but it never gets easy.  In the beginning I felt so much closer to him, to his spirit. Now I feel this gap widening. I hate it. It makes me cry, it makes me sob and cry aloud for him. It’s yet another step forward into this new life. And change is hard... I resist it with every tear that falls. I am growing and so is he in Heaven. We are both becoming stronger and transforming into better beings from our experiences. We are learning. But it hurts.  Time makes no difference. As much as I try to stay positive, hopeful and prepared, my body remembers the trauma. It’s emotional and physical. The subconscious feelings of the last months of Xavier’s life are bubbling up again. Even though I wasn't consciously thinking a

You don’t realize how comfortable you are in your new life until something so concrete reminds of the life — of the living child you used to have. It may sound strange, but as we approach the two-year anniversary of Xavier's passing, I remember him not being here more than I remember his life before we lost him to brain cancer. Or at least lately I have subconsciously chosen to move forward with life and this newly forged relationship -- or continuing bond -- with my dead child. Sometimes its less painful to think of him as he is now, than to remember what it was like with him alive. Those memories remind me of what I am missing. They sting! Xavier's drawing from 2015 after his first relapse. I believe he knew then he was going to die. So many hidden messages in this picture from him rising up to the tiny rainbow.  As I recently sorted through some files I came across his report cards, his drawings and all of his medical documents. They stopped me in my tracks. He d

Top three things I learned on our first vacation since our child's death: 1. Grief doesn't take a vacation!  2. Your loved is with you no matter how far you travel. 3. It's OK to be sad -- even in paradise. Last week our family went on vacation. We sailed away on a massive cruise ship to visit Puerto Rico, Dominican, Bahamas and St. Thomas. For seven days I was away from reality. I was away from all the photographs of our past family vacations with Xavier. I was away from his urn boldly displayed in our living room. I was away from his room filled with his toys, his costumes and his bed where I cuddled up next to him and kissed him one last time before he stopped breathing.  For one week, I was away from the daily reminders of the trauma our family has endured - and the emptiness of a home where only one of my children now lives.  While I basked in the sunshine as we sailed thousands of miles across the ocean blue escaping from the everyday s