The parents of our AE kids have a tough road no one can dispute that. Usually we hear from the Mothers as women tend to seek out support more than men in our society.
So what about our Dads? Are we to assume that as we don’t hear much from them because they are not engaged with their sick young ones? No. I think that some men have a little more trouble asking for help and bearing their souls than we women do. My husband comes to the doctor with me if my daughter is not available but never offers up opinions unless asked by the doctor. My daughter on the other hand usually says too much.
I remember when my daughter was 7 and stepped on some glass, she had to go to the ER to have it all removed. She was terrified and I was young and sure she would loose her foot. My husband stood by her head and repeated softly “It’s OK, Daddy’s here” It calmed her and me too. In my work as an aide and a nurse I saw a lot of children in Hospice and while moms tidied the beds fetched and carried needed things Dads often comforted, held undersized teens in their arms like babies, read stories and even just watched TV or played video games.
Did those Dads feel pain at having a sick kid? You bet I’ve seen them cry outside the kids room or at the kitchen table, curse the disease as they went to work, bring home a treat or just stand and stare off into space. I spent hours in a busy week listening to Moms expressing their fears and grief. Going over what the doctor said to try to find hope. And just listening to any thing they wanted to talk about. But the conversations I have had with Fathers were more taciturn, a light description of the day’s events maybe or phone messages. Rarely did a Dad express his grief or fears. No talk of what the future could be like, or what does the doctor think. I always assumed that the quiet ones got their information from their wives in private moments. But wondered if they ever grieved out loud, railed against fate or cried out their fears openly.
So this Father’s day I want to say to all of our Dads that I have seen your pain and you were no less of a man for showing it. You have gentled your child in distress. Tried to calm them and encourage them. Advocated for them. Searched for answered. Stayed up late into the night reading to better understand AE. Held your wives, reassured your other children who are worried about their sister or brother. I know you love and care for your children deeply and feel the burden of being the strong one. I know you hurt and fear. And from all of our AE kids no matter what age I want to say thanks for being there and Happy Father’s Day.
This song expresses the lessons Fathers want to instill in their children. Be BRAVE out there!
International Autoimmune Encephalitis Society (IAES) is a Family/Patient centered organization that assists members from getting a diagnosis through to recovery and the many challenges experienced in their journey.
Driven by the knowledge that “Education is Power”, International Autoimmune Encephalitis Society manages an educational support group for patients diagnosed with Autoimmune Encephalitis and their loved ones, empowering them to be strong self-advocates and advocates that will lead them to best outcomes and recovery. We are the premiere organization leading in these vital roles.