The Journey of Parenthood with MS

I have recently come across a variety of questions about motherhood/parenting with MS, whether it’s about trying to conceive, pregnancy itself or parenting in general. I have written about parenting with MS before, but I’ve never really done an article that covers all of the bases. I think there is a lot of fear associated with parenting with MS, and honestly, that’s completely understandable. I had a lot of fear and anxiety about it myself. I understand having kids isn’t for everyone, but if it has been in the back of your mind, I have a piece of advice I would like to share with you: If you think you want children and are able, please, please don’t let MS hold you back. Is it hard? Absolutely. Is it scary? One hundred percent. Do I worry? Every single day. But, you guys...what parents don’t have those emotions every single day?

My son helps keep me sane

I’ve said it before, but I’ll say it again, my son is the best gift I’ve ever been given. He is such a wonderful distraction from reality, and he helps keep me sane as the world marches madly on around us. As I sit and watch him play outside, I’m just beaming because I can’t imagine a life without his sweet little self. If I would have let the fear and anxiety of all of the “what if’s” stop me from deciding on having children, then I would have missed out on the greatest joy of my life. If you are considering pregnancy or are worried about parenting after diagnosis, here are a few things I want you to know.

Yes, you can still have children after MS

Yes, you can still have children after diagnosis. Having babies after diagnosis is possible, and it’s just as wonderful. I had my son exactly 11 years after diagnosis, and I wouldn’t change it for anything. Of course, there are risks, but that is why it’s so important to speak with your doctor as soon as you decide you’re ready to pursue pregnancy. There is no evidence that having MS affects getting pregnant, and while you are pregnant, you are in a “safe zone.” By safe zone, I mean that while pregnant, MS symptoms usually either stay the same or even improve. You are only at risk for relapse after childbirth, but that’s where your MS doctor can help. My doctor was wonderful about making sure I had a smooth pregnancy and that I remained healthy and relapse-free after delivery. Keep in touch with your MS doctor throughout the entire process; they are such a valuable resource!

The reason I take better care of myself

We are currently in the process of trying for baby number 2, and my MS specialist has been a large part of that. It’s also important to keep your OBGYN in the loop and keep them informed about your MS and any MS changes. Parenting with MS isn’t as horrible as it sounds. It’s not horrible at all. Yes, I have my bad days. Yes, I have days where I have to explain to my son that mommy needs more rest. But, parenting with MS has not been the nightmare I once feared. In fact, for me, it has been the opposite. I like to tell people that my son saved my life. It sounds dramatic and probably even really silly, but it’s true. After having my son, I did a complete life makeover. I realized I had a little life relying on me now, and I wasn’t about to do anything to mess that up. It’s because I became a parent that I became healthy. It’s because I became a parent that I became strong. My son is the reason I get up and the reason I smile every single day. He is the reason I push myself, and the reason I take care of myself in ways I never did before. It is a love so big that you can’t possibly imagine it until you experience it for yourself.

Sometimes you just cheer from the sidelines

It’s a crazy ride, and there are some crazy hard days, but it’s the best ride, even when you have MS. You can still be involved and have MS. This was my biggest fear before I had kids. Would I be able to keep up? I’m here to tell you that if you want to badly enough, you can. Some days it may just be cheering them on from the sidelines, but that’s okay! The beautiful thing about kids is that they are full of grace. I try to be involved with my son as much as possible. He’s an active little boy, and I love playing with him as much as I can. There are days, though, when playing with him is more difficult. Some days, I just have to be honest and tell him that mommy has to sit down more. If we are playing outside, I have to tell him that mommy needs a minute to cool off. I’ve even had sick days where I can’t do much, but he is just happy to sit with me in a chair and cuddle. I truly believe that little ones see when we’re trying. So, even if we can’t be 100%, they know we are doing our best.

Children don't judge you for taking a break

Do you know what the most amazing thing I’ve learned about parenting a toddler? They don’t judge you for taking a break! They just love that you’re with them! Sure, some days they throw more fits because, well, what toddlers don’t? But they get over it very quickly and are back to loving you with all of their might. It’s all about your reactions. Parenting is full of teachable moments every day. One of the biggest things I have learned is that young children don’t necessarily understand when we are down or having a rough day, but they do see how we react to them. They don’t see how tired we are or how much pain we are in. They don’t see our foggy minds and our emotional rollercoasters. They see that we get up every day and that we love them. They see our attitudes.

Being there for him today

I want to wake up even on my worst days and show my son that even when life is so very hard, that I keep going. I want to teach him that sometimes life doesn’t go our way, but that's okay. I want to teach him that people and things fail us continually, but we can still stand tall and give grace to others. I want him to see that some people are different, but that doesn’t make them any less, and to love everyone equally. Your actions and reactions matter! Worrying about what if’s isn’t worth it. In parenthood, you worry. A LOT. Every day is full of worry. You worry about their health, you worry whether you’re doing it right, you worry if you’re doing too much for them or not doing enough. There is one thing I try not to worry about though, and that is if, for some terrible reason, that my son will get MS, too. Or, heaven forbid, that my MS gets so bad one day when he’s older that he will have to take care of me. Worrying about the future steals today of its joy, and it’s just something I don’t want to worry about. Yes, it may happen, but it may not. Either way, we will worry about that mountain when or if we come to it. In the meantime, I will hope and pray for the best. If you’re going to worry, which, again, you will--worry about whether or not you’re doing your best to love them and be there for them TODAY.

Don't be too hard on yourself

I am far from a perfect parent. I fail, and I fail often. But in the last three years of being a parent, I have learned more about life than I have in the entire twenty-eight years that I’ve been alive. And over half of those have been with MS. Regardless of MS or not, becoming a parent is life-changing, and when I say that, I mean it’s life-changing in the best way possible. They come into this world and steal your heart. I am in the stage of parenting where my son is still small, and I know there will be much more to learn. I look forward to it though, because I see how much it’s already taught me. So whatever stage you’re in, remember, don’t be too hard on yourself, especially when it comes to this disease. Enjoy your little ones, and cherish every moment because I’ve already learned that it goes by entirely too fast. Give yourself breaks and give yourself grace. Encourage your children, teach your children, give them your best, even when you don’t think you can, and love them with all of your might. That’s what parenthood is all about.

XOXO,

Calie