Being a parent must be one of the hardest tasks you can encounter in your life. After all, the life of a new human being is in your hands, literally. But then, life throws you a hardball: an unexpected multiple sclerosis diagnosis. Your whole world seems to crumble. If you thought you had it difficult, now is when things start to get complicated.
Parenting while living with MS is a big challenge, no question. Especially when mobility issues are present. Running after a toddler is not available anymore, and you’re concerned about their safety. Also, the high levels of fatigue can affect your endurance. Not being able to sleep and rest enough hours because you have to take care of your baby at night will compromise your performance the next day. Not to mention the brain fog that the lack of sleep can cause, too. It can be chaos!
My MS diagnosis came when my kids were 16, 5, and 4. They were all going through their own individual challenges. The two little ones had just started their first year in school and needed mom more than ever. They had just been recently “abandoned” to the mercy of some stranger that, from this point forward, they would have to obey and listen to, and what’s worse, with mom’s approval. Meanwhile my oldest was enjoying the perks of teenage life: pimples, disproportionate ears and nose, body odor, etc., and of course, desperately seeking the attention of girls.
I was so physically disabled that it made me wonder: Will I still be able to take good care of my boys? How am I going to drive them to and from school? How will I cook for them? How will I give the little ones a bath? Too many questions popped in my head, and I couldn’t seem to find the answers.
Changing My Mindset
While I was in the hospital, I stayed in touch with them over the phone. My middle son, the 5-year-old, kept asking me, “When are you coming back?” I kept saying, “I’ll be home soon.” One day he said to me, “You know what mom? I’m going to find a new mom because you keep saying ‘I’ll be home soon,’ but you never come home.”
Time stopped for me right there. Those words pierced my heart so deep that I felt I couldn’t breathe. I understood I had to get better and it had to be soon. I put lots of effort into my rehabilitation. It was like fuel ignited inside of me, and the fire it started could not be put out.
I finally came home on Christmas Eve. The timing couldn’t have been better. Without even giving it a second thought, I jumped right back into my routine. The first thing I did was bake a lasagna. My kids love my lasagna. After dinner we finished decorating the Christmas tree. Then I tucked the kids in bed and waited until they fell asleep so that I could wrap all their presents and place them under the tree until the next morning. Mind you, I had just been discharged from the hospital. I was weak and had lost 10 pounds. I had intense fatigue. I was using a walker and could barely use my legs, plus my right hand was completely paralyzed. But I didn’t care. The kids were happy as can be, and so was I.
From that moment forward, I never doubted myself ever again. I never questioned what I could do or not do despite my MS. When I heard that innocent voice of my son telling me that he was considering replacing me because I wouldn't come home, I said to myself, “I don’t think so. I’m showing up!” I’m going to be the best version of a mom I can be to him and my two other boys. As I changed my mindset and I approached my motherhood from that new perspective, everything started to unfold for me organically.
As I tried and failed, I learned. Modifying the way I did things was essential to survive and succeed. I adapted and made adjustments. For example, I kept a chair right by the stove to sit down while I cook my kids’ meals, or I used my rollator walker to transport the vegetables or milk from the fridge to the countertop or to transport the laundry basket from one room to the other. I even installed a wall-mounted fan in my kitchen to avoid overheating. These little things can make my life easier as I still get the privilege to be a mom.
Here are some tips to adjust your busy mom’s life to the new you:
Don’t hide your diagnosis from your kids. Have “the talk” with your kids using age-appropriate language. You don’t have to necessarily tell them everything that MS involves, especially if they’re still too young, but please let them know that you have a condition called multiple sclerosis and explain what it could do to you without scaring them. When we lie to our kids, it makes them question what they can trust. Speak with the truth and explain to them that there’s treatment for it. And if they ask, reassure them that you’re expected to live a long life since MS is not mortal. It’s also important that you let them know when you’re not able to do something or go somewhere. Sometimes we make the mistake of thinking that we always have to be available. The only way they will develop empathy for you and, eventually later in their lives for others, is if they realize that sometimes mom is having a bad day and can’t do it.
Ask for help and kindly receive it. If you’re known for being a “supermom” that can handle anything and shuffle a million things at the same time, just know that asking for help is OK and highly necessary. Allow others to help you, and learn to delegate. You don’t have to be in absolute control all the time. You’re not less powerful because you need help. Taking the load off your shoulders for a little while will reduce stress, which is so important to keep your immune system happy.
Conserve your energy. Learn to listen to your body. Pay attention to the signs and take a break every time you need to. Pace yourself and hydrate in between tasks. Don’t miss your kids’ game or play because you overdid it and now you’re too tired. Don’t put too many things on the “to do” list on the same day you have bigger plans with your children. Their lives are your most important event.
Include your kids in your care. Help your kids to participate in your care by including them. Let them help with age-appropriate chores around the house. Teach them to be independent and encourage them to offer their help when you’re too tired or when you need help picking up something you dropped. Inform them of which tasks are more difficult for you, like maybe putting your socks on or buttoning and zipping. Trust me, they feel so good about themselves when they’re able to help. They feel important because they’re part of it. It gives them confidence, and it also helps them understand what living with MS is like firsthand.
Live life today! Wherever you are in your MS journey, enjoy every minute you have with your kids. If you can’t ride a bike anymore, get on your scooter and go. I do it all the time, and it’s so much fun. Go on vacations and travel if it’s available to you; just bring all your new friends with you (cane, crutches, scooter, walker, wheelchair, AFO). Create memories with them. Try your best to keep the ball rolling without exceeding yourself. Practice self-care so you can be your best version. Live in the present and make the best out of your new life. Remember, you only have one life, and your kids have only one mom.
To connect with other people living with multiple sclerosis, join our MS Facebook Support Group.
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