What it Feels Like to Be a Mom with Multiple Sclerosis

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I try so hard to not think of myself as different, because if I do, then I get sad. The truth is, however, that I do have multiple sclerosis (MS), a disease that changes things for me. It changes decisions I make, and feelings I have, and the choices I make. But, I STILL have choices.

When I was pregnant with my son, I was riddled with fears about what kind of mother I would be. Sure, it’s normal for moms to have fears, but I felt that many of my fears were unique because of my MS. I was terrified of dropping him. I wondered: Would I be able to carry him up and down the stairs? Would I be able to keep him safe? What would happen if he ran away for me and I couldn’t chase him? Or if he got too strong for me? How would I, the person that was supposed to be his everything, protect him? I would cry myself to sleep many nights — and I am sure the hormones played a big part in that — about my concerns. Thankfully, none of my fears have come true. Is it harder for me at times? Sure. But I am doing it. And he is alive and healthy and vibrant and amazing, and I feel stronger than I have ever felt every time I look at him.

When he was first born, I was exhausted. However, it was all manageable because he was so tiny and all I needed to do was lay around with him, breastfeed, and sleep when he did. I had help when my husband finally came home (he was still playing baseball the first month of Beau’s life), and all seemed okay. Breastfeeding was not the easiest to manage, but I was stubborn and adamant that I wanted to nurse Beau. Then, when he was around 4-months-old, I developed mastitis, an infection of the breast tissue that some breastfeeding moms get. I didn’t realize what it was, at first, and I let the symptoms go on for too long. In fact, I ended up being taken by ambulance to the emergency room in the middle of the night, while my husband and my son stood out in the cold because the baby was too tiny to be in the hospital, waiting to hear what had happened to me. I had gone septic. I had zero strength to do anything, and I had no feelings in my legs. It was painful and because of my MS, the infection had caused me to become extremely weak. I had to spend five days in the hospital getting IV antibiotics.

It killed me to be away from my son during my ordeal. I was told I had to stop breastfeeding and take better care of myself, because that’s what Beau needed more than anything. It was a wake-up call for me. I still needed to take care of ME. I was important, too. It’s so easy to forget that when you have a child, but especially when you are dealing with any kind of chronic illness or disease, it’s a must. So now I had to adjust. Hand over some duties to other people, and take time for myself. I started exercising again and hired a trainer to come to my house twice a week during Beau’s naptime. From there, I began trying to figure out how to manage my disease and motherhood. It took some time, and I feel like I am always going to be “figuring it out,” but it’s better.

As Beau has gotten older, and bigger and more active, so have I. I still have my limitations, but it is my main goal to make sure that he has as full of a life as possible and I just have to figure out how to make that possible when I can’t do everything with him. I always make sure he gets plenty of time to run outside. Half of each year I am a single mom, because his dad is on the road playing baseball, so when we go to parks I try to always make sure they are enclosed. While he is a good boy (most of the time), there are those few occasions that he just wants to run free, and I can’t run after him, so an enclosed park allows him to run wild, and I have his safety insured. I can easily take him swimming in our pool, and on days that we do things like that, I just make sure I rest when he takes a nap, so I am well and energized when he wakes again. I am still able to play baseball with him (which takes up 70 percent of my day), I just can’t run the bases. He knows this and accepts it and is okay with it, although all of it takes some explaining, especially since he is only 2.

I think having an active little boy has actually pushed me beyond what I thought my limitations and strengths were. He is healing me, in every sense of the word. Sure, I have days that I am praying for it to be bedtime because I am so exhausted I could cry, but I am so grateful for my little boy. He has shown me that we shouldn’t live in fear, and we should wake up each day excited about what life has to offer. Sure, my situation is less than ideal most days. I wish I wasn’t in pain and that I didn’t have to think twice about my movements, but focusing my attention elsewhere means that I don’t have time to dwell on those things. He has shifted my outlook from fear to love, and that is where miracles lie.

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Photo: Getty