Friday, October 18, 2013

Day 11 of watching and waiting

There isn't much to report. I sit with Sam and watch his chest, waiting for each breath. I scan his face searching for signs of distress, discomfort, pain. I touch his skin, feeling for clues-is he hot or cold? Does he need a blanket? Does he have a fever? I struggle to interpret his inaudible whispers and weak hand signals-Water? Pain? Hunger?

All I want is for him to want for nothing. To need nothing. To feel no pain. To have no fear. I'm such a failure.

I miss his eyes. I miss his little voice. Oh who am I kidding? We haven't heard his real voice for months, but I even miss his whispery voice. I miss his laugh.

Halloween is less than 2 weeks away and our jack o'lanterns have already gone moldy and been thrown away. It a good thing I decorated and carved early. At least I got that right.

***Did I write that I am a failure? What I meant to say was I have failed. That is truth. I have failed to meet his every need. To have him never know want or pain. I did fail. I am failing. I will continue to fail him. It is just a fact. Not a judgement of myself as a mother or a person. It just is. I have to accept that I cannot achieve this perfectly peaceful passage for him. It is impossible. It hurts. But it just is.


  1. You are anything but a failure! Your strength and love and devotion to Sammy has been so amazing. He is so blessed to have you as his mother. I am in awe of your courage and dedication.

  2. A failure??? NOOOOOOOOOOOOOOO!!!!!!!!!!!!!!!!!!!!!!!!!!! You are a loving, caring, supportive mom who is in the midst of the most painful, most unbearable, most unbelievable time of your life!!!!!!! You are NOT a failure!!!!!!!!!!

  3. Sabrina, you and John have not failed, what you are experiencing is Powerlessness (did you receive the book I sent?) This is a basic parental instinct...that to protect our offspring. You have done everything you can to make Sammy comfortable, you have supported his wishes, and you have dedicated your being to him. As a parent would. And, you have not failed Sammy. He felt your love through this whole ordeal. Even Ben and Abby are feeling this powerlessness, but they do know that whatever might happen to them, they can always count on their parents to be there for them as well. And you have met his every is out of your control that cancer took over Sam, but you met every need to keep him comfortable and happy. Like Jaime said, we are all in awe of your courage and dedication to all of your family. Sending {{hugs}} to all of you.

  4. I feel incapable to write anything that might bring you comfort. I want to tell you that I admire you. I love Sam and have never met him. Your family's love and dedication to bring him peace, comfort and dignity is humbling. Your walk in this world is so steep that it breaks my heart. I feel the overwhelming love between Sam and everyone he has touched through his song, the posts and the fundraising success. He will be a huge part of a cure one day because of your and his strength. I believe that this is not our home...he is probably closer to the threshold of Paradise than I am today but that is not for me to know. I hope I meet him one day so I can finally tell him how profoundly he (and you) have touched my life.

    With great Compassion,


  5. My heart absolutely breaks for you and your family. As a pediatric nurse in oncology, supporting the family is just as important as the child. The helplessness is every parent's nightmare in these horrendous situations. Life's "unfairness" is so hard to digest. I would never tell a child nor parent what to feel or not feel. But please know there are thoughts and prayers being sent your way as you travel through this

  6. You are the best mother (and you two are the best parents) your kids could ever wish for. Our hearts are breaking for all of you.

  7. Your unconditional love, support and tenacity astound me each and every day. You are an amazing mom, and a teacher to us all on how to love ferociously and share with such honesty and grit. I wish there was something I could do or say, but I know there is not. So I pray, hoping those words bring Sam and your family some comfort in an impossible time.