by Basilisa Perkins, mother of 2 and public health educator in Broward County, FL. Advocate for her girls and, at times, homeschool teacher to her daughter with special needs.
The Buddhist nun, Pema Chodron, explains hopelessness in a way that resonated with me and has helped me to become a better parent to both my children. She defines hopelessness as giving up hope of things being different than they are right now.
Chodron explains how we humans can be trapped in an endless cycle of hope and fear. We hope for things to be different and we fear they won’t change.
Hopelessness is not pessimism. It doesn’t mean we give up being advocates for our children. It is instead a release from the burdens of the hopes we project on them.
I have two children. One is developing in a typical way as her peers, the other is not and will not. She has had serious medical issues and her development is normal, for her. I do not want to burden my beautiful child with my hopes that she will develop at a different pace. But it’s painful to see that your child doesn’t “fit in” in school and in social situations. It breaks my heart when she asks why she isn’t invited to sleepovers, like her sister.
As parents, when we do advocate for our kids with special needs, we start from a place where we are trying to honor our children; their struggles and their needs. Every effort to accept them fully for who they are, today. I say “trying,” because it’s still a work in progress for me.
But, the hopes are hard to let go.
Hope is another four-letter word
We special parents do a lot of research; at least I do. We find new programs, new curriculum, or maybe a new activity.
Unconsciously we build our hope in these new tools. Then we cross our fingers and hope for the best, setting ourselves up for heartbreak when we realize our child is not “fixable”.
This is why hope has become another four-letter word. Whenever I feel extremely stressed about my kids it’s usually because I’ve gotten trapped in that cycle of hope and fear. In those moments I see my child as my “project” and myself as a failure for not being able to change things.
Then comes hopelessness and I can release the struggle. It reminds me that I’m not here to fix her, but to love and accept her.
Gratitude Moves Us Forward
The path forward out of this trap is gratitude for the present. Sometimes when we’re all together sitting around the dinner table I look at each of my children and my husband, and I just drink in that moment.
I remember how many times we were in treatment and our family would be separated; one parent with one child in the hospital, one child with a grandparent, one parent working late or getting some extra rest. But here we are, all of us in this beautiful moment.
And I realize I didn’t have these children so they would become responsible citizens, good workers, doctors, lawyers, engineers… This connection to them is what it was really all about. And no brain tumor, no grief or pain, not even the uncertainty about the future, can rob me of this moment. That gratitude grows everyday.
My Daughters Are Loved
I’m learning that when we start with acceptance for our children we give them and ourselves an enormous gift; a powerful connection to something deeper. My daughters are looking to me to know that they are loved, and therefore how they should love and accept themselves. They must know they are worthy of love.
Hopelessness sounds so austere and heartless. But it has given me back my children, and the ability to move from struggling in survival mode, to finally surrendering and…peace.
My older daughter is an artist, and my younger daughter just loves people. Now, I can focus on clearing the path to whoever they are meant to be.