Capture Your Grief Day 26: Their Age

Oh, how little time we had, in retrospect. At the time it seemed endless, every day seemed like it would never end, like the time we had with her could stretch on and on if we just hoped enough and prayed enough. We were so tired and weary with the not knowing, with the endless cycle of different doctors projecting a possible diagnosis that always came up empty, giving everyone more questions than answers. We wondered if we would have to make hard decisions her whole life, if she would ever have a chance to be “a normal kid” or would it be test after test after procedure for the next few years. We couldn’t know we would not even have a month with her. If we could have known how little time we had, we would have done everything differently – and yet there isn’t one thing I think I would change, except I would have held her. I would have brushed my caution aside and held her every minute I could, I would have savored every second.

At the time I cried over her skin, I cried over whether or not her hair might ever grow with the deep damage to her scalp. I wondered if she would ever be normal or if kids would tease her. I spent so much time pumping milk, away from her, pumping milk that she never got to drink. In the end, nobody ever got to use that love I pumped so fervently, somebody in the NICU threw it away even as I was trying to make arrangements to donate it to a bank. (That was yet another loss I had to mourn in the face of losing my daughter, somebody carelessly throwing away my love, my nurturing, my tears and sleeplessness and broken dreams from breasts that would never hold my baby close to them, tender mommy moments that would never be. That alone was so devastating for me when the nurse called me, tears in her own voice, to tell me what had happened.)

All of it seems so unimportant now in the face of what I know. I had only 17 days with my daughter in this world outside the womb, and I will not get one day back to do over.

A whole lifetime in 17 short days.

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