By Alicia Harper, Small Portion of a Life's Journey, January 19, 2010
The title has been the extent of my last 24 hours straight, minus the sporadic 4 hours of sleep I managed to squeeze in last night and plus the other random duties of mommy-hood to three and wifey-hood to one. Let me point out that it is currently 2:47 a.m. and my sweet 'lil man has finally comfortably crashed for the night in his bean-bag bed I made for him after finding relief in a flurry of helpless attempts at suppressing his cough. I'm not sure what finally worked to settle him, or if he is finally just too exhausted to cough... either way, we're camping out in the living room tonight.
I could finally make an attempt at sleep, yet now I sit here trying to wade through the fog of emotions inside my head, jumping at every little wimper or noise Brayden makes. I am clearly exhausted, but insomnia wins again... Insomnia or the unsettling worries that I'll miss a gasp or a choke and fail to help my little man, while validating my feelings of helplessness at the same time. Why do I get so uncontrollably scared that I will miss something and fail him? Fail by not helping him fight...
I despise these times when Brayden is sick. Everyone in my house has been sick the last couple of days, including myself, but my 'lil man is the one I worry over the most. I always feel helpless when I cannot take my kids' pain away, but when the fight is bigger, as it is with Brayden, the feelings of helplessness are greater. Taking him to the doctor has proven to be a waste of time, x-rays and tests and they always tell me the same thing, "Considering his condition (hydranencephaly), this is to be expected. Keep doing what you're doing, and wait this out." I know that nothing with hydranencephaly is truly "to be expected". I really wish someone could give me a cure-all, or at least cut the little guy a break. Isn't living with a condition deemed "terminal" and "incompatible with life" enough for a child to bear without the woes of incessant coughing, struggling to breathe through a stuffed up nose, crying inconsolably for relief from the teething pains, while only making the coughing and congestion that much worse in the process of crying? Why do the hurdles seem so high for him at times?
Yet, unlike me, Brayden is completely unaware that this is a greater obstacle for him. He casually seeks out comfort, he knows I'm here the second he needs me... and rewards me with a smile through it all. Despite the exhaustion I feel, and the helplessness that I cannot make him better, that smile melts it all away. The fact that he can lay in my arms looking completely miserable, yet that simple gesture expresses such a great amount of comfort and relief in him. Every little wonderful moment like this teaches me a huge lesson in life... now if only I could use those lessons and not let the stress of every tumultuous moment of my own life overwhelm me. Even obstacles can be seen as opportunities... he keeps me strong, just when I think I cannot be strong anymore.