There is a component of special needs parenting that isn’t talked about often, but really needs to be. Grief. Y’all, we grieve a lot. If you have an extra complicated life like mine, you know there’s so much grief, more than is fathomable at times. Not only is there a daunting amount of grief, it comes in many different forms. Those forms are not always easily recognizable to others on the perimeters of our lives. I want to take a moment to discuss those different types of grief.
First, we grieve the loss of normal. We grieve for our children who got harder lives than any child should get. We grieve their loss of a typical childhood. We grieve our own loss of “normal” family life and the rites of passage that come with that life for parents. We grieve lost milestones like first words or sleepovers, all the various activities of typical childhood that often our children don’t experience, or at least don’t experience in the same time or ways as others.
I’ve been a special needs parent for a long time (almost 25 years since the first diagnosis). I am all too familiar with this kind of grief. I’ve watched my children grow up differently from all my nieces, nephews, and children of close friends. I’ve watched as countless other children in our lives have graduated, first high school, then college, and even grad school for some. I’ve cried as these children have left the nest and launched out into the adult world. I’ve attended their weddings and witnessed them start families. All the while, not experiencing any of that with my own children. While I am always happy for the loved one who has reached these happy milestones and try my hardest to exude joy for them, often my heart is sad and broken for the loss I (and my children) feel.
Yes, of course, we have had our own milestones. My adult-aged children have had their own successes. They have finished school and moved on into adulthood, but it looks different. They have or have had some level of independence, but they have needed more support from my husband and me, and they always will. That carries a weight to it that can drag us down.
As I’ve said, our family life is very complex. We have more components than most families, which in turn means we have felt more grief than most. We have incorporated a child into our family that lost his origin when the bond with his birth mother was severed. While he lacks the cognitive ability to fully comprehend that, somewhere deep within him, he knows that and he grieves it. As his person, I grieve that loss for him as well. I’ll discuss what adoption grief has looked like for us in a separate post soon.
Finally, there’s the ultimate grief. The grief that rips our hearts out of our chests and makes us gasp for breath because of the intense pain it causes. The grief that brings pity to us from everyone around us, and that distances us even further from our friends and family. No one can imagine what it is like to lose a child, unless they have been there. Bereaved parents join an exclusive club that no one wants membership to. Our child died, despite all our best efforts to prevent that. We did everything we could to keep Miranda alive for as long as we could and we lost her anyway. The pain of that reality is intense.
When added up, all these types of grief we have endured become a daunting amount of overwhelming loss and sadness. The emotional load my life brings to my shoulders is extreme. If you live with similar circumstances, you know how burdensome the grief load is. On the average day, the weight of grief is manageable. I carry it like an extra backpack that I just strap on and tote around with me. Sometimes I’m so accustomed to it that I barely notice it.
Then there are days where I cannot stand under the weight and pressure of all that grief. We land on an anniversary date related to my Miranda. Maybe it’s her birthday, death anniversary, or some other significant date. Perhaps it turns into a particularly hard attachment day with enormous feelings within the adopted child. Or maybe, the day brings the sharp pains of living such a different life from everyone we know. Any one of these circumstances threaten to drown me in a deep pool of despair, and sometimes it all comes at once. It’s okay to not be able to bear the burden of the crushing weight that all these different types of grief cause when they pile on all at once. It’s okay to not be okay. I give myself permission to sink. I give myself grace. I allow grief to come in and be my body-mate for a time. It’s good to recognize it for what it is and give it some space, but only for a time.
I once read a statement that resonates so clearly with me. “Grief is just love with no place to go.” It is so true. This little phrase has helped me put grief into a new framework, no matter which type we’re talking about. Grief is love. Give it a place in your heart. Make peace with it. In complicated lives like ours, it’s the only way to carry forward. The vast amount of grief is just an indication of the vast capacity to love. So go ahead and love, even when it breaks your heart.
