As special needs parents we think we know grief. We think that we are intimate with it on a daily basis. We think that it cannot surprise us anymore with its intensity and pain, and the vast chasm of loss. It can. It does. Every time.

We think we know grief. We grieve for every missed milestone and every experience. We grieve every birthday party invitation that they don’t get. We grieve the skills they fought so hard to achieve and lost overnight inexplicably. We grieve the childhood we thought we could provide. We grieve the loss of innocence and the distrust in their eyes as they look at you in surprise every time a needle is poked at them. We grieve the parent we thought we would be. We grieve the vacations we can’t take, and the hospital stays that replace them. We grieve the loss of friends as one by one they drop off unable to listen to your sadness anymore, unable to relate. We grieve the missed experiences and the lost moments. We grieve the before. Then we grieve the after as the after continually changes.

We think we know grief. Because we grieve when someone far away loses their fight. We grieve from a distance along with other parents whom we’ve never met who experience the imperceivable loss of a child. We grieve as a community.

We think we know grief. Until a child that you’ve held in your arms, the daughter of a friend, is the one that you’re grieving.

We think we know grief. Until a girl who snuggled up with you and shared her favorite blanket and special Froggy with you is the one that’s gone.

We think we know grief. Until you wake up and find your own daughters hair wet from tears you cried in your sleep.

We think we know grief. Until you hold your child and cannot find hope or gratefulness in your heart, only guilt. Only guilt that your friend miles away has vacant, aching arms. Only guilt that there are so many other mothers like her. Too many mothers.

We think we know grief. I hope I never know the unimaginable grief of an empty bedroom with a rapidly fading smell. I hope I never know the grief of my daughters voice left only as an echo. We fear grief.

We think we know grief. Until it has our head hanging over the toilet trying not to vomit from the shock of it.

We think we know grief. Until we are on our knees wailing with it. Sobbing.

We think we know grief. Until we are clinging to another Mom on a cold windy overpass greeting the body of a child on her final journey home. Asking each other unanswerable questions like why? how?

We think we know grief but every time we find it surprising us, ravaging us anew.