“Where you used to be, there is a hole in the world, which I find myself constantly walking around in the daytime, and falling in at night. I miss you like hell.”
-Edna St. Vincent Millay
So many people fail to realize all of the loss that goes with losing your child and a special needs child at that.
There is the loss of your child, your whole world. For us, it’s been a loss of identity as well. We were Kreed’s parents. Period. Raising this beautiful boy with everything we had and more. Our life literally revolved around him and his needs. Until one day there were no more needs to be met. And we were left with ourselves and no one can imagine what that is like after so long of meeting a child’s needs- more so for Carie and the entire 18 years of meeting his needs.
Support systems. From losing an entire half of a family who didn’t seem to understand what this loss meant and how it devastated us, to the special needs community to the medical community, and even social media family. Everyone was used to our darling boy and following his dimples and amazingness to now following posts like this about grief. And now we stand on the outside of a special needs community that we were once so active in, trading stories or help or support. Now. Now we are on the outside because we are their fear, that one day they too could lose their child. We are the harsh reality of what it can ultimately mean to parent a special needs child.
I lost the years I thought I had with our boy. What I was going to teach him. Where I was going to take him. Things I dreamed of doing as he got older, and I thought also better. The life I thought he would live also having access to cannabis and feeling so much better.
So much loss wrapped up in the loss of our boy. For us, it’s been everything.
Even two years later we still feel those losses. We are still picking up the pieces of our shattered lives the day he left us.
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