A couple of days ago I received the desperate call of the mom a child with a disability. She was sobbing while telling me her story: How her child was diagnosed, how her daily life has turned into a never-ending war with the school system, how bad her marriage is going and how judged and offended she feels every time family members label her as obsessive or in denial. She feels like her world has broken into pieces and she has no friends left and no one to lean on or trust. I quickly noticed she ended every phrase by saying some version of: “I’m not complaining about my child. I believe in him and I know he would not be this person if I wasn’t who I am.”
You know when someone calls to ask for advice or just vent, and suddenly you feel like you are listening to yourself on the other end of the phone?
When you’re talking to someone and their desperation makes you realize that you don’t give yourself enough opportunities to vent, to fall down, to accept that you are no super-hero and that your child with disabilities doesn’t give you superpowers. You are a human being with needs like any other.
There is now a desperate need to humanize mothers of children with disabilities to help us all to understand that we are not doing what we do all by ourselves to prove our value, we are operating in a system that doesn’t see us as human beings.
We must see that we don’t need to do it alone, and we shouldn’t either because life is long, complicated, and we need and deserve support. Those high expectations that we have for our children’s abilities must be translated as well into expectations towards those who are a part of our family and our support system – we need to expect more from those who should and must be there for us and our kids.
Why so often do we end up in crisis as mothers of children with special needs?
Of course, we are not all the same, but in cases like this one, and in cases like mine, many times we have started this path feeling comfortable with the super-hero cape or the “special” labels that the world assigns to us. We use them to strengthen our passion and to motivate ourselves in the name of love.
But what happens when the tough reality hits home disguised as a panic attack, depression, or confusing thoughts or feelings? Do we realize that our minds and our bodies are asking for help, or do we choose to fight these signs with our nonexistent superpowers making them worse and, at times, even dangerous?
In my personal case, it has taken me years to learn how to ask for help, and still, I struggle to do so. I think anxiety has somehow become my normal state which I have learned to redirect in the most positive way; however, my most important resolution this year is to hire professional help. I have taken giant steps to learn to accept help over this past year. I have learned to trust people more and I have realized that many times it isn’t that people don’t want to help, but that I don’t want to share control. Probably hitting my 40’s helped me realize that I’m not invincible, that I’m aging like everyone else, that my faith is powerful and strong but doesn’t make me immortal. I guess having these reflections, which are always not easy but are completely necessary, has helped me to open my world and feel okay while relying upon others for certain things.
I just hope new generations of mothers (sorry I am not including dads but, culturally at this time, this is more of a mother situation), don’t need to go through all this to understand that they have the right to be loved, to be supported, to be accepted, to find balance with love and understanding from those around them. We all feel like superheroes at the age of 20 or even 30, but as time passes, our humanness becomes a reminder of the desperate need to humanize ourselves in our role as mothers. I believe that this is even more pronounced when we have a child with a disability.
Here’s to a new year free of stigmas and shame, a new year full of support, love, and self-reflection in order to reach happiness for ourselves so we can share it with those we love the most: our children.
