It eventually comes up during conversation. We meet. There is small talk. We talk about our children, their ages, grades, and how crazy life can be as a mother. It might come up early in conversation when one of us brings up IEPs. Sometimes it surfaces when we talk about challenging behavior. In the past, it was the look when my daughter walked in with a walker. I know those sympathetic smiles.
“Molly had a stroke during my pregnancy.”
There is shock, surprise, and questions. Suddenly, the tone of our conversation shifts. For my fellow mom, it may become awkward. You might not know what to say or what to ask. I understand. I have found myself in the depths of these conversations with others, on your end. I have a lot to say if you have time. Do you want to know more?
As the mother of a perinatal stroke survivor, there is a lot I want you to know.
Ask me anything. Your questions are how we educate and spread awareness. Through your questions, perinatal stroke becomes less of an unknown. I embrace your questions. When you express interest, you are showing me you care.
I want you to treat my child how you would treat any other. There is no reason to talk to her like she is a baby. Though she may be slow to respond, she processes everything you say and fully understands. Talking to anyone like a baby is insulting. Offering your apologies or pity is also hurtful. Please do not apologize for the amazing person my child is.
My daughter does not represent every perinatal stroke survivor. Many of the perinatal stroke survivors we know have hemiplegia as a result. Even within this population, there are vast differences. Seizures and complex medical issues affect some individuals while others have no lasting health problems. You simply cannot look at my daughter and see an accurate representation of what perinatal stroke looks like.
I feel lost. A lot. As time progresses, we face new challenges. These challenges may or may not stem from her stroke. Given she is my first child, every age is new territory. I always question if we are dealing with something that is age appropriate or stroke-related. I find myself frustrated, and if I’m completely honest, angry with her. Her outbursts are mentally draining. There are moments I cave and yell back. When you have a child with a disability, others assume you have it together. Parents of children with disabilities are super moms. We are strong… I am far from both. I feel clueless and defeated. I always question if I am making the right choices. Did I advocate enough? Did I ask the right questions at the IEP meeting? Am I pushing too hard or not enough? What can I do better? And what are the correct terms? Some say “special needs” is offensive while others say it’s fine. Disability before or after “person?” I hear both. My daughter has no preference now but what if something I say impacts her later?
Teach your children to accept everyone regardless of their ability. We are in the stage in which Molly’s classmates want to help her. One of her friends sends home notes with words of encouragement. Children are loving and accepting until outside influence takes over. I worry about how others will treat her as she goes through middle school and high school. Sadly, other friends who are stroke survivors are already dealing with discrimination and exclusion.
Above all, I want you to know Molly for who she is. She is determined, hard-working, and feisty. She is not one to give up. She loves fiercely and has a tender heart. Art is her passion, and she is very creative. Her cats are her love, as she is an animal lover. These are what I see when I see my daughter. These are what make her the beautiful person she is. Before you knew she had a stroke, this is what you saw. Do not let a disability define the person she is.