Coming to Terms With How Multiple Sclerosis Affects My Parenting

There is a sea of emotions that come along with diagnosis. There is the relief of knowing, the dread of what is to come, and feelings of helplessness while you figure out what your next course of action will be.

Finally obtaining my multiple sclerosis (MS) diagnosis led to the end of my marriage. The anger of this circumstance was short-lived… There were more important things to worry about. I needed to recover, figure out how I was going to move forward with my life and health, and take care of my children. I found a permanent job, rented a house, and managed to move my kids across the country to live with me again. But, after six months, I was so physically exhausted and sick that I felt like I could not properly care for my two beautiful daughters, whom I love more than life itself.

The fatigue was always something I battled with, but knowing that it had become impossible for me to stay awake during homework time was becoming distressing. The true sign that my MS was progressing came with the forgetfulness, the brain fog, that I could no longer ignore. I struggled to remember thought in mid-sentence. I had moments where I was at work, but couldn’t actually remember driving to work. I had to set alarms in my phone to remember to pick up my girls from their after school program.

All of these things could be dealt with, however, I had to make the most difficult decision of my life when my oldest had to repeatedly remind me that I was cooking on the stove one day. Reminding me once could have been absentmindedness that anyone can encounter, but by the third time within a span of 20 minutes, I took a chair and sat in the kitchen staring at the stove so I wouldn’t forget again.

After more than a week of crying every moment I was alone, I called my ex. The girls couldn’t stay with me anymore. As hard as it was to feel like I can’t be the mother I feel I should be, I also knew that I could never forgive myself if any of my actions ended up hurting my kids.

Thankfully, my ex and I are on good terms. He knows the struggles that I go through and we still care for each other even though our marriage didn’t last. Without hesitation, he respected my decision. He knew that I must truly be scared for them if I was asking him to let them move back to his house permanently.

He has since given them the best home. He makes sure they call me before bedtime and that we video chat several times a week. I visit them every chance I get. Those girls know that they are the love of my life and that I miss them. I make sure of it. My ex makes sure of it.

I may not be able to be the mother I want to be, but I am their mom. My illness may prevent them from safely living with me full-time, but my love for them will never stop. I’ve come to terms with this and, ultimately, it will be OK.

Editor’s note: This story reflects an individual’s experience. If you would like more resources around your rights as a disabled parent, head here: http://www.disabledparentrights.org/.

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