normal

after my husband & i had been married for a few years, we looked around at our lives & the lives of those we knew & were convinced of one sole desire. we did not want our lives to be "normal". what does that even mean? at the time, we had no idea. our thoughts were basically we don't know what we want, but we know what we don't:
we don't want a picket fence life.
we don't want to keep up with the jones'.
we don't want our conversations with people to center around our new car or curtains.

so, on these random thoughts, we began praying for a life that was not normal.
as those prayers went up & time went on, other "not normal" thoughts came. i told my husband one day that i had a pressing feeling that we, at one point or another in our life together, would have a special needs child. his response was at the very least deprecation. after all, we hadn't started a family yet & what kind of feeling is that for a young married couple? each time that thought surfaced, i successfully dismissed it as a possible foreshadowing of a distant future. maybe kid #5, when we were advanced in years & could love him or her in our old age along with all of our other children. i pictured the sweet face of a chid with down syndrome or maybe a wheelchair? what i didn't know was what i never could have pictured.

fast forward a few more years & i'm pregnant, at the halfway point. we pop in the ultrasound video to show the eager audience of family. the black & white portrait of the little one inside my belly tosses & turns on the screen. we, the proud mom & dad to-be, describe the details of crossed legs, spine, face, profile, beating 4 chamber heart, of the floating star of the show. as we narrate, we leave out a few particulars. like how most umbilical cords have 3 blood vessels & this one only has 2...& how those black blobs in the brain are actually cysts that are sometimes "normal" & sometimes not. a few months and many pounds later a specialist sat us down & said "things had progressed".

what we got was not normal. it wasn't the way we had pictured a not normal life, i mean we wanted no picket fences for petes sake. it wasn't even a special needs child to love & live a long life with. in an instant "not normal" was actually "not viable with life". it was a baby with a beating heart that had a hole in it, clenched fists, & sweet life inside my own that was terminally ill. we knew all this bad news about this kid before we even knew if it was a boy or girl.

it was a boy. his name was eliot. he was awesome & i believe is even better now. the 99 days he was with us were incredible, miraculous really. i spent 3 months & 10 days staring at the cutest "not normal" there ever was.
he left us for the much better 15 months ago. in his absence, my husband & i live with a constant ache in our hearts of missing him. this blog is about my learning to live with that ache.

an author named jerry sittser talks about how loss & saddness actually expand the soul. this is my journey of expansion.