a mother crying in the bathroom, her daughter entering the doorway behind

How my Suffering from NMO Impacted my Daughter

I had just gotten out of the hospital. I informed my daughter that 2nd dose of the Corona vaccine had triggered the NMO. Now, my immune system, which was supposed to protect my body, was attacking me. I also told her what the immune system was.

I was changing in front of my daughter's eyes

My daughter knew her superwoman (me) as a very independent mom. Now she was witnessing me going through trauma and breakdowns. She saw I had no control over my bowel movements because of paralysis waist down. I was now dependent on a wheelchair.

I had leaks that made me feel disgusted. I had to take help, even when changing clothes. It was a big-time mess. Plus, with so many medications I had to take, it was horrible.

I held my daughter close and told her that things might look really bad right now, but to never stop believing in God. To be thankful that I am still alive and that we are together. She hugged me and smiled.

Her father was also impacted by my suffering from NMO

She saw a big change in her father’s behavior, too, as he was getting affected by my illness as my caregiver. He was always sad, but my daughter ensured that she would give him all the hugs and kisses in the world to make him feel better. My husband was taking care of me, and my daughter was taking care of him.

Why, God?

During one of the conversations with my mother, she said that she overheard my daughter standing in front of God’s idol and asking questions. I can imagine it went something like this:

“Why is my mommy, who was different - cheerful and full of life now look like some rotten vegetable? I see other kids with their healthy parents having fun, and I don’t feel good. I want to cry, but if I cry, Mommy will. I have to be strong. I’ll play mommy and take care of her. Nanna and everyone say that she got an evil eye. My question was, how do I make her feel better? Will she die soon? Cause when I looked for NMOSD on the web, it said people die soon with this illness. It’s a rare disease with no cure. So my question to Nanna was, if there is no cure, why is she eating so much medicine? I hope she gets better and some miracle happens. I pray for her every day.”

My heart sank because I could tell she was trying to be so strong. I called her and told her that I was not dying any time soon, and she had to stop googling stuff. Plus, the medication was showing an effect on my body.

A Christmas miracle

My daughter and I love Christmas. I am still a little girl on the inside who believes in Santa. She knows that very well, so I keep reminding her no matter how old you get, never let go of the inner child. She told me that on Christmas, she had asked Santa to do a miracle in my life.

NMO steroids

Steroids were making me fat like a balloon. I took my mom inside and showed her I was getting bald and hated my face. I saw my daughter eavesdropping. She heard the whole conversation anyway. Upon returning home, she told my mother that she didn’t find me ugly. She couldn’t figure out what the fuss was all about. Besides, she was praying to God - and to Santa, of course - for me to get better each day. And no matter what, she loved me.

Evil NMO spasms

My daughter visited me again after two months. This was the worst phase of the NMO. My spasms were nonstop. I was crying every time a spasm came to. My leg turned, fingers bent, and I was screaming, "Stop throwing acid on me!"

I could see the horror on my daughter's face when she saw me going through all this. She said her mommy looked like a scene straight out of a horror movie. She didn't know how to make things right but wanted to make me feel better. I saw her getting frustrated and angry over doctors and questioning them why. My husband, her, and I had many sleepless nights.

This went on until August 21. My spasms were bad. I was in and out of the ER. I was so anxious that I used to ask for her all the time. I just wanted to hold her hand because that made me feel better. To my blessing, she was always there. My back hurt because of all the needlework in my spine. With no answers from my doctors, I was at my worst. Her hugs and when she touched me with her hands to make me feel better did wonders, and she knew she had magical powers.

Finding community

My father asked me to look for more information on NMO on the web. I found this group, and the change began. My daughter told my father, “I think Santa and God must have chatted and heard my prayers, and I got my Christmas present early.”

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