Coping with Disability and Being a Parent

I used to be a very proud person, well in most ways pride is still something I struggle with. Prior to being diagnosed, if you asked me what my best qualities were, I would probably say that I was self-sufficient, strong and/or independent. Today, the independence is no longer much of an option. I need a lot of help, I mean like I could use a team of people to help me with the typical stuff moms do. If I ever win the lottery (which won’t happen because I don’t gamble) the first thing I would do is hire at least 2 people to come to my house at least once a week to do cleaning, then a laundry service, one that folds and hangs clothes, and a chef… who I am kidding I would do that and hire someone to help my kids with their homework because this new math hurts my brain more than Trig did when I was in high school and my brain worked.

These were never things that crossed my mind when I was in my early twenties, I was going to be a stay at home mom who helped with all the homework and school projects, had a clean house and a healthy snack ready for when they got home from school. Multiple Sclerosis takes a lot of things from you. It’s different for each person too, it also requires getting your stubborn brain around the concept that you are no longer that strong, independent person who can manage everything on their own. I do not like being that person. It’s a process, and I speak with a therapist regularly about my life, the changing, the constant struggle of being a good parent and partner while internally struggling with the idea of moving forward with a body that is in a continuous state of decline.

There’s a harder part for me that has been a huge challenge in being a parent, with my oldest, I was able to stay home for the first two years. I took him to play dates and activities, the zoo, the museum, anything I could to encourage his growing brain to develop skills and curiosity. They always say the second one is harder, I get it… there’s two of them now, you must adjust to not having one on one time with the children. With our second child I worked, I had missed working so I was prepared to stay at my job. There’s always that guilt that working moms have, being a mom is a job too, but sometimes for the happiness of everyone you have to go to work and have grown up conversations.

As time moved forward things seem to just keep getting weirder for my health. Before I got pregnant with our second son, I was told I would not have any more kids unless I had IVF, I don’t like needles so we prepared for an only child. I started having severe chest pain; I had a heart issue in high school, so I was worried it had reared up again. This led to stress tests, EKGs, echoes and even a 30-day heart monitor. The Cardiologist told me it wasn’t my heart and shrugged at me because this was the only thing, she could tell me. It took 3 years from the extensive heart testing to be diagnosed with M.S. and then I was told it was mostly likely an MS Hug because of the location of a lesion on my spine.

Since my youngest I have not felt at my “best”, getting used to what being a parent looks like now is a very long, challenging process for me, I am sure it is for most, especially ones with young kids. You always want to be your best for them, they don’t understand “chronic pain” thankfully most kids don’t understand what migraines are. Each day I wake up with the intent to be a more patient and engaging mother, and when I fall short, I try to be kind to myself, my kids and go to bed pledging to try again the next day. For other parents out there with autoimmune diseases, chronic pain and fatigue or over whelming stress, I know it’s hard. Plan to try your best and don’t beat yourself up when the day doesn’t go as planned and everything turns into a cluster, it happens but at least you tried.

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