Thursday, June 23, 2011


No medication today and I managed the entire day. I take that as a small victory in the battle of my sanity. I won't take it as a set back, if tomorrow doesn't go as well and I need it. I find myself longing for Sylas during the day lately. I miss those moments I could be having right now. Bath time, bed time, feeding, the smell of a new baby. You know all the fun things of mommyhood. I don't know if those longings ever go away, since I am so new to this grief and loss thing. Axton seems to be struggling lately. With Asperger's for him and OCD for me, our life is very structured. Neither of us do good with craziness or being off schedule. Right now, we have zero schedule and are good to be in bed before midnight. My task right now is to find a way to find normalcy in the madness. He did ask last night why he couldn't see a picture of Sylas. We have one picture that if we can photo shop just a little, he could see it. We just told him we would show it to him soon. He said "If you won't show me, Jesus will". I guess he knows where our help comes from too.

I told Sylas's story today at a bereavement training class. I don't know if it helped the nurses who were training to help people like us, but I know that me talking about him, helps me. I am pretty sure, God is on to that. The more I talk about Sylas, the closer he is to me. People seem taken back with how open I am about our loss. I would have thought with my insane personality, nothing would shock people. He isn't fully gone if he is always talked about. I also feel like the healing comes in the pain. The nurses and staff at St. Vincents are family to us. They have left an imprint on our hearts. In a time of loss and grieving, we had no idea what kind of impact strangers would have on our lives.

God, if I learn anything from Sylas's death, let one thing be for me to always draw closer to you. As the song says, The more I seek you, the more I find you. The more I find you, the more I love you. I find you daily, in the most random places. Places that have always been, but I have been so busy, I haven't paid attention. You have my attention now God. Fully!

Until then...
Sylas's Greatest Fan


  1. Dear Sweet Sharon,

    How my heart aches for you, for your overwhelming loss, and for your living child who doesn't understand. How could he when the adults in his world don't understand. Accept maybe but understanding ... not til Heaven!

    Is the photo that you have a digital image? I would be glad to try to edit it for you if that would help.

    Know that you are covered in prayers. Even by people you have never met!

  2. Thank you so very much! I can scan the photo. It wasn't one that was on the cd the hospital gave us. Our 6 year old is so much like me and I think he needs a picture to go with his healing to let go of the brother he never knew. Thank you again for your kind words! They means so much.

  3. If you want to scan it and e-mail it to me I'll see what I can do. And I promise to treat it gently ... and with honor!