A Mother’s Perspective (2003)
In the months ahead I began to research and learn all that I possibly could about MS. I dug deep, looking for answers to what we’re facing with a daughter having MS at 13. I learned that there is very little information available and definitely no support in our area. Every situation we were to experience, we were learning on our own.
However, with all of the articles I read and websites I visited, nothing could prepare me I watched MS torment my child, torment my family and rip my heart right out of my chest. My dreams for my daughter are really no different than any other mother’s dreams for her child. I want her to have a successful career, marry a good man, have a family and be overwhelmingly happy. What I used to envision has now become a huge question mark and my dreams are filled with fear. Now, I wonder, will my daughter lose her eyesight; lose the use of her legs? Will she be able to endure college and the stresses of a career? Will she find a husband who will love her come what may? Sure, many of us marry thinking that person is my life and they love me, but now this person could be her very lifeline. And what will happen to her if something happens to me? On and on the thoughts race through my mind. With every new day I wake up and wonder what MS will rob my daughter of today. I live with this bottomless sickness in the pit of my stomach.
So I started reaching out, asking questions, searching for help. “HELLO! Can anyone help me out!!” Well, my family and I were pointed into one disastrous direction after another. We attended support groups that were worse than a family funeral. We were sent to professionals that didn’t comprehend what living with MS at 13 meant. We searched for doctors who weren’t afraid to treat a child with MS. There are few. HELLO – PLEASE! SOMEONE HELP US!!!!
My husband says I am an overachieving, type A person. Maybe he’s right, but I know one thing for sure. I had to do something. My daughter’s future depended on it. So I arranged a meeting with some people who I thought would be able to help us. We pitched our idea to them just to have it thrown back in our face with statements like, “The numbers really aren’t there for pediatrics,” or “You are really going to be paving new territory.” I left meetings upset but more than that, I was angry. I was angry for what was happening to my little girl and angry that, because it is so rare for children to have this disease, many didn’t find it worthwhile to give us their attention. But I was not about to let that stop me. I wasn’t exactly sure what could be done to help kids with MS and their families but I knew something had to be done.
I saw my daughter going into a state of denial, and I was headed into such a state of rage that I had to burn it up. I volunteered at our local chapter of the National MS Society’s walk. I thought that at least I would be helping in some way. I started talking with people and seeing different drug companies there with booths. I stopped by one booth and met this wonderful lady named Helen. She gave me a card and invited us to attend an MS Lunch group. At that time, I thought, Oh, yeah, that’s what we need, another funeral. So I put a big smile on my face and happily agreed to meet the founder of this group. She was so nice but she wanted my phone number and contact info and I feared that if I gave this information, there would be no getting away from her. But I did it anyway. She started asking questions and I told her about Brandhi. She thought that I should talk to the director of the mscenter. She thought he might be able to help us. We walked over to his booth, introductions were made, and, to my surprise, he was very interested. He looked at me and said that he wanted to help us make this happen. We exchanged contact information and within a couple weeks we sat down to discuss this further.
He introduced me to a lot of people, drug representatives and various people affected by MS. However, the most important thing he did for us was believe in us. He has so much compassion, a big guy with a huge heart. For the next year or so he was there for us giving us advice, connecting us with people and lending his support.