How utterly optimistic my last post was. Four months, gallons of tears, countless hospital visits and stays later I sit here and can only cry.
After loosing Sara we endured yet another pregnancy, ultimately holding our beautiful boy in our arms, so perfect, so healthy and strong…
We were on top of the world, flipping our fingers to the cruel Universe shouting that we would “Nevre gif up”
But it only took Universe sixty days to bring us to our knees again. I don’t even know how to quantify the pain of seeing my baby convulse in my arms, just meters away from where his sister’s body shook for the last time, her eyes wide open yet not seeing me anymore. His little body stiffens and eyes start to roll and flicker and I hold him tight, as if I could hug and kiss the seizure away. But I cannot…
In one of my posts I wrote about grieving the future that will never be. I have to add another type of grief. The grief that is brought on by your fear. The grief that only parents of disabled or seriously ill children know. The endless “what will happen” questions that torment your mind and you keep asking the doctors. They skillfully avoid the answer with “let’s focus on now” and in the end that is the best answer. But there are days when I just want to drop to my knees and tell them;”please just lie to me, tell me what I want to hear”
Some days are like that, overwhelming in way too many ways with burdens that nobody but you can carry. Some days you deeply hate yourself for many reasons, but you carry on.
Thank you virtual paper for lessening my heavy load today, but now I have to pick up the physical paper and write down yet another seizure…
ktojoy 