Fear

I live in a world of fear. Fear of losing my only living child. Fear of losing my family. Fear of losing my mind.

I have lived in a world of fear for a long time now. I can imagine all of the terrible things that can happen to me and the ones I love. At no time, did I ever know to fear an unknown, rare disease that would take my child from me.

I was always afraid to die. I was afraid of the pain, the unknown, being alone, and the idea that no one would remember me. I am still afraid to die, but it is different now. Now my fear is for my son having to live without me. This fear is torn though. What about the son who is not with me? Is he okay without me?

I dream he is strong and wise. He looks over me and his brother gently guiding us through life until we meet him again. I tell myself Monkey needs me more. Noah is in a place, whatever and wherever it may be, where is he safe and loved. He is whole and it doesn't matter if he is healthy because it his soul that is there not his earthly body. I dream he can feel my love. I must believe that my love for him can transcend what separates us.

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I mourn for the life he lived and the life he never knew. I mourn for Monkey losing his twin, never knowing the bond between brothers. I mourn for me. For the son I only held for a short while. This grief is suffocating yet comforting all at once. It is isolating and full all at once. I have found this wonderful community of babylost mamas, who I may never meet in person, who have allowed me into their sisterhood and yet at the same time, am very alone in my everyday life. I have my family and friends, but they do not understand that while they discuss everyday things, my baby's life is running through my mind. They talk about the upcoming holidays and I am swept away to the cold December day saying goodbye to my sweet boy. They expect joy, but I don't believe I have truly felt joy since the day I found out I was expecting. Since then, the joy has been laced with fear and sadness. Grief is confusing and all consuming. I am not sure what drives me. I am not even sure how to reign in its power. It takes over when I am not looking and I become unable to speak or think.

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Today is day 4 of our daily trips to the hospital for Monkey's meds. We made a late night visit last night because his PICC line was bleeding and the dressing had to be changed. As I carried Monkey through the doors of the ER, I remembered carrying Noah through those doors. Each time I step foot in that building, I must tell myself that I will carry Monkey out with me. Just because we are there does not mean I will leave without him, not like I did without Noah. Each day, I take a deep breath and head for the pediatric floor. I force a smile and say hi to my favorite nurses. Nurses who stood by my side as I fought for Noah's life. Even they have moved on. They have not forgotten, but they, like everyone else, do not see my wounds. They do not feel my grief and fear. As I wait for them to direct me to room, I silently pray it will not be 215. I can't sit in that room with my living child and remember losing his brother. I must be strong and that is more than I can bear.