I’m Not The Mom I Thought I’d Be

But who is? We think we know what it will be like to be a parent. We imagine how we will handle certain scenarios, then we actually become parents, and reality sets in. Try as we might, things won’t always go as planned or as hoped. So what do we do? We adapt. We improvise, and just plain old wing it. I feel like I didn’t think much about what motherhood would look like, but I knew I wanted to be a mom. 

The Answer That Almost Changed Everything

married couple

I was diagnosed with relapsing-remitting multiple sclerosis in August 2014. Multiple sclerosis is a chronic illness of the central nervous system, aka the brain, spinal cord, and optic nerves. To put it simply, the protective coating on our nerves is attacked, which messes up the communication between the brain and the body. I had been having some weird symptoms off and on for almost two years before getting the right diagnosis. Things like tingly/numb feet and legs, gait issues, fatigue, and balance problems to name a few. It was a relief to finally have a name to what had been happening. We could start to fight it. I wasn’t familiar with MS; I didn’t know anyone with it. The one thing I knew was that there was no cure. 

This all happened one year before we planned to get married. I felt like the future we were planning was no longer going to happen. But that was the fear talking. The unknown of how MY multiple sclerosis would play out. With my husband, my family, and my friends behind me, we had an amazing wedding day on August 8, 2015. 

Then Comes a Baby in a Baby Carriage

Shortly after we got married, I had my regular six-month appointment with my neurologist. We went in knowing we wanted to talk about family planning, how pregnancy could impact my MS, and what to do about my medication. A little history lesson: before the 1950’s, women with MS were actually told to avoid pregnancy because it was thought that it could make their MS worse. Years of research shows that pregnancy actually reduces the number of relapses; it is unclear why but hey, we can have babies!  

We walked out of that appointment relieved, especially considering my three times a week injectable medication was deemed safe to continue taking until I became pregnant. It was exciting and scary. We could become parents! We were ready to face those challenges. I found out I was pregnant in March 2016. I had a relatively easy pregnancy as well. People say that being pregnant with MS makes them feel “normal” again and their symptoms subside. My main issue was with walking and pain in my feet. There’s no way that would subside while I was big and pregnant! As our fears subsided, Isabella Grace entered the world on October 26, 2016!

mom and baby

I’m Not a Regular Mom, I’m an MS Mom

Once Isabella was born, my MS remained calmish. I had a few issues with my feet and walking, so my doctor prescribed steroid pills that I took for three days. By December, I was back on my medication; it was safe to get back on it while I attempted breastfeeding.

Being a mom is hard enough, and being a mom with MS has its own set of challenges. Often times the biggest symptom for people living with MS is fatigue. Yep, FATIGUE. I just birthed a child from my loins and I am answering her beck and call at all hours of the day and night. How was I going to beat mom fatigue and MS fatigue? I won’t say I napped when she did, because I sure did not. But I would do my best to REST. The rest alone was just as rejuvenating as a nap. And I could stare at her while she slept. So it was perfect.

I try so hard to be a “normal” mom. We go on playdates, we go to the park, we take music classes, etc. I.try.so.hard. I can’t stand or walk for long periods of time without rest. I start to walk funny, and my “pimp limp” comes out. So I can’t be a “helicopter” mom, my body won’t allow it. I have to be mindful of there being places for me to sit while she plays. I also have to be prepared to mostly sit on the floor of wherever we go because she will inevitably want me to play with her too.

I have to get creative at times if she wants to play and I am just tired. We do a lot of playing on the floor so I can sit, we do crafts at the table, and sometimes we just sit and *gasp* watch TV most of the day.

We all just do our best. I don’t want her to ever feel like she was deprived of anything. So I have to just adapt and figure it out; which is something all of us moms are trying to do. I am nervous for the day that we will sit down and have a conversation about why mommy is a “little different” than the other mommies. But on the bright side, I hope I am teaching her strength, resilience, empathy, and so much more.

Multiple sclerosis sucks but I have found that I am much stronger than I thought I could ever be. Though, I often wonder what kind of mother and wife I would be if I didn’t have this disease. Could I do more? Would my house be cleaner? Would we go on more adventures? Would there be more home cooked meals? This can be a dangerous spiral of thoughts, and I try not to get there often.

My daughter and my family are my motivation. She keeps me going…literally. I got this. YOU got this. Keep being the best mom you can be. 

Follow us along on Instagram as we continue to learn how to adapt to challenges with MS and motherhood!

What are some words of inspiration that keep you going on your hardest days?

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6 Responses to I’m Not The Mom I Thought I’d Be

  1. Avatar
    Mike Mixon April 2, 2019 at 8:53 am #

    Thank you so much for opening your life and letting us into your world! As you stated I don’t know much at all about MS and honestly have never thought about the impact it takes on being a mother.

    That endless spiral you speak of is dangerous as we all experience it to some extent but I can only imagine that with MS it’s a much scarier spiral.

    Keep up the great work for your daughter only knows you, the great mom that is doing whatever to provide her with a great life. She doesn’t feel as if she’s missing out on anything know how you should know? Her smile tells you shes happy… and thats all the affirmation you need!

    Keep kicking the sky kid!

    • Lydia Guillory
      Lydia Guillory April 3, 2019 at 6:59 am #

      Thanks man! I really appreciate everything you said. I also appreciate your support and encouragement over the past few months!

  2. Alison
    Alison April 2, 2019 at 9:45 am #

    This is beautiful! You are amazing and such a wonderful mom! I am so glad you are advocating for a cure. I am so proud of you!

    • Lydia Guillory
      Lydia Guillory April 3, 2019 at 7:01 am #

      Thanks Alison! Being a mom is tough for everyone, for sure. But MS likes to make all the things a little tougher; I won’t let it stop me from continuing to try though.

  3. Avatar
    Tiffany Fluellen April 2, 2019 at 9:51 pm #

    Wow…like you, I have MS. I’ve had it for 11 years now. I recently became a mom to our now 10 month old via adoption. I overstand how you feel. Thank you for being vulnerable enough to share. It means more than you realize, especially to me.

    • Lydia Guillory
      Lydia Guillory April 3, 2019 at 8:52 pm #

      One thing that I have to tell myself often, is that kids are resilient. Even when I feel like it’s a bad day and that I’ve failed her in some way, she’s still so happy. And the next day is a new day!