I’m telling my story as a parent with a child who has Juvenile Myasthenia Gravis. Let me introduce myself. My name is Felicia Smith, and I too have Myasthenia Gravis. This story is not one that’s easy to write. It’s been a long struggle of things I never wanted or thought my child would have to endure in her life.
It became official in 2014. She was only 12. My daughter had my horrible disease.
I was mad. I was angry. I cried and I felt guilty, so very guilty for giving her a life long sentence that I knew would always be a challenge. Me being sick was one thing, but watching her suffer, watching her while knowing what the outcome of this disease is, was heartbreaking. She had grown up watching her Mommy be sick her entire life. How much more harsh can life be? Why her? Why us? A mixed bag of emotions as a parent, that only a parent who knows the disease inside out could understand.
We had been going to several doctors over the course of three years. You see, she’s been down the road of unknowns herself. The doctors only saw a child who couldn’t explain to them what was wrong. She only knew she felt bad and that’s what she told them, over and over. It became a waiting game for us. We waited at endless doctors offices, we waited in hospital rooms, we waited on tests, we waited on labs, we waited on answers, we waited for our daughter to be a kid. Most of all, we waited on a diagnosis. It became very evident that Savannah was tired of waiting. She dreaded yet another visit, another poke with a needle, another doctor telling her they couldn’t find anything wrong. We would make it to the car and she would cry. She would cry out of fear and anger and so would I. I laid awake at night crying for my child. Crying to God, certain He had forgotten my baby and me. I was becoming angry with Him. I myself was becoming bitter to every doctor and nurse we saw. They treated her as if she just needed to not think about how she felt and try to be more active and gain more friendships.
I will never forget the first hospital stay with her, still without a diagnosis. I was very ill myself with my MG and hadn’t left her side in the hospital. As you can imagine I am weak and as exhausted as she was. I had mentioned to one of the doctors that I had MG, can they please check her because of her symptoms. I got a rapid response. “There is nothing wrong with your daughter, you just WANT her to have the same disease you have. She just needs a better sleep pattern and to be on public school and not home schooled”. What just happened? Were they serious!? I lost my cool that day, I was no longer the complacent mother who was doing what the doctors told her. I was a mother bear, an angry one who was woken too early in the spring. I went into attack mode. I lashed back like I never had before over my child, enough so that we were dismissed from the hospital. I admit, it is not my proudest moment, but looking back, it was the best thing that ever could of happened. We kept pushing. Kept looking, seeking out all pediatric doctors we could. Every single one was a dead end. No one would listen to my thoughts on MG, telling me it wasn’t hereditary that I was over thinking this.
Along the way she was diagnosed with Juvenile Arthritis. I thought I had an answer, albeit not a great one. It comes with its own challenges. We started treatment and still, I saw the signs of MG and mentioned it to her rheumatoligst. He assured me once again it was just muscle weakness from her JA and she needed to build up muscles. I wasn’t happy with his answer. I kept seeing other doctors outside of his care. I finally took her to the retina specialist who had taken a chance on me. After all, what did we have to loose? I said, “PLEASE look at her!” I begged him to give her the mestinon and see if it worked for her too. He gave us a script for a cat scan to check her thymus and for mestinon. Her thymus was indeed enlarged and the medicines were working! A simple CT and a listening ear gave us answers we were desperate for!
We got her into the MDA clinic to see Dr. Weiss. He looked at me and said, “I don’t know how they missed this. I can’t believe all they have put you both through”. We couldn’t believe it either but it was nice to hear a doctor say it.
She had a complete thymectomy in November of 2014. It was so hard watching my baby suffer and go through pain that only I, her mother, would ever understand. She has an electric wheelchair for bad days and sadly good days are still few and far between, but we cling to hope that she will gain remission. So we are back to waiting, but waiting on a different ending. All of this is proof that a mother’s intuition is never wrong. Never stop fighting for your child. Be their voice.
Mother to an amazing and a strong, little warrior with the spirit of a fighter deep down inside.