Mary Anne’s Story
Receiving a diagnosis of a rare epilepsy is not what anyone wants for their child and family. It is a struggle to learn about this rare condition that your child will not outgrow and impacts every aspect of their daily life. As parents and caretakers, we have to make frequent decisions for our children’s health and well-being, and these are often complicated choices with no straightforward answers. It’s a struggle with the anxiety and grief that accompany the many unknowns.
My rare disease community has been invaluable for support and advice. I have also been fortunate to have good friends and family members who have stepped up and tried to help my family throughout this journey. If you are trying to provide support to a newly diagnosed family, I wanted to share my experience on what others have done that made life easier for our family.
1. Choose supportive words carefully.
Don’t minimize my child’s disease by saying he “looks good” or will probably “outgrow it.” I realize these sentiments come from a supportive place, but that can feel dismissive with all that my son is going through. We are frequently dealing with seizures, hospitalizations, frequent visits to doctors and specialists, blood draws, multiple therapies, side effects from medications, and more. While he may not look sick, he is dealing with a lot. Acknowledging his and our family’s struggle is more impactful than glossing over it.
2. Be open-minded and patient.
Cognitive delays impact my son’s decision making and social interactions. His behavioral issues and tantrums can frighten others or cast judgement against my son or my parenting. Kindness and empathy for the fact that both he and I are doing the best that we can in those moments is very much appreciated.
3. Reach out to caregivers.
Being a caregiver for someone with a chronic and severe medical condition is mentally and physically exhausting, making my free time limited. While caregiver communities offer vital support and information, I still want and need relationships with friends and family. I appreciate it when people check in with me, but I ask for your understanding if I am not in the mood to talk or have to cancel plans at the last minute. That is not a reflection of you or our relationship. I am often dealing with a lot of heavy things regarding my son’s care, and sometimes I need to take time to process.
4. Simply listening.
I face an ongoing cycle of grief that can be triggered by a variety of things and unloading my concerns can be cathartic. I don’t expect people to understand everything I contend with, but I appreciate when you make the effort to hear me. Simple, heartfelt words of support and encouragement are helpful.
5. Tell me about your family’s successes.
I want to share your family’s joys and triumphs with you and don’t want a wall between us because my son is sick. While it might sometimes be hard for me to watch your child do things that my child can’t, I am genuinely happy for your family.
6. Include our family in your plans.
Our lives are fraught with challenges, which gives us all the more reason to want to go to a party or see friends. Continue to invite us and please be understanding if we have to cancel last minute. I often have to make a difficult decision to avoid situations to keep my son from potential seizure triggers which limits our social interactions. Asking what you can do to make it easier for us to be a part of your plans and being flexible is priceless.
7. Here’s some little ways to help.
When your child can end up in the hospital with no warning, it is very stressful to handle the other details of day-to-day life while you are away. Being surrounded by a support system makes a big difference, and often people don’t know how to help. Things like cooking, grocery shopping, or helping with childcare can ease the stress. Any relief you can offer will be greatly appreciated and helps me feel supported when I need it most.
8. Please include my son.
I really appreciate it when you invite my child to be involved and when you are flexible in accommodating his needs so that he is able to participate. He has so many limitations on what he can do, but he loves being around people and having fun. It means the world to my son and our family when he’s included and feels a part of people’s lives.
Mary Anne Meskis is a founding member of the Dravet Syndrome Foundation (DSF) and accepted the role of Executive Director in 2012. She is a passionate advocate and in addition to her role at DSF, she serves on several epilepsy working groups and patient advisory panels. Mary Anne resides in North Carolina with her husband and her youngest son, Elliot, who has Dravet syndrome.