Life as We Know It

I recently walked our two boys to town to get pizza, and I ran into another mother from the neighborhood. She was alone and bringing pizza home for her kids because she and her husband were going out for a much-needed date night.

"It's so important to make time to do that, you know?" she said to me, looking for relatability as I tried to wrestle a handful of napkins from my three-year-old before he tore them into confetti in the restaurant.
"Oh yeah, of course!" I said, with a nod and a smile. In my head, a few thoughts started to swirl.
Like to the last few times that my husband, who was diagnosed with MS in 2016, tried to go out for dinner or drinks. More than once, we had to change our plans because his fatigue was too great, or he had some other MS symptoms that would make the night out less desirable than just a night going to bed early.
Or that I was so jealous that she was out in town on her own without her kids when I had carted our boys in with me while my husband was home resting, battling his third case of strep this year. He had just received his infusion treatment a few days earlier, and we suspect that it weakened his immune system just enough to reignite whatever he had just recently gotten over. Our date night that night was going to be an early bedtime for the boys (and us).
Those thoughts came to me quickly, but so did this: In spite of the lack of “date nights” and me having to do a lot of solo parenting, it is what it is, and we’re doing alright. Every family has their challenge, and this is ours. And so, the best thing I can do is help our family live our lives as it is.
Our life is taking each day as it comes and not worrying too much about the future or even the past. I learned early on that just because one day is bad doesn’t mean the next will be, too. Once I learned to let go of the fear that my husband’s condition could turn, I felt a sense of control over a previously uncontrollable situation. This doesn’t mean that we’re ignorant to the reality of the disease, but we don’t let it control our lives and what we do. We celebrate the good days and roll through the bad ones.
Our life is me often being the spokesperson and advocate for my husband and our family to help remind others of the challenge we face as a family impacted by MS. When people see my husband, he usually looks “normal.” But they don’t see his numb leg or sometimes difficulty remembering things or his usual exhaustion. They don’t see how hard it is for him to be sidelined by fatigue when he most wants to have energy for me and our boys. It’s my job as a support partner to help others understand what life looks like for him.
And our life is us appreciating the little things that bring joy, even if they are very little. Enjoying a nice meal cooked at home, watching our kindergartner read a full book for the first time, or playing with the dog that everyone said we were crazy for getting—all these things remind us that even in our hardest moments, we’ve made it through and we’re okay. So we may not get out on date nights the way other couples sometimes do, but we make time to show each other that we’re there for each other, even if it means we’re in bed by 9 p.m. on a Friday.
Tags Caregiving, Parenting, Symptoms      10 Appreciate this
| Reply

Kate McCaughey

Kate McCaughey is a proud wife, mom of two busy boys and a school counselor in New York. Since her husband's MS diagnosis in 2016, Kate has tried to help her family balance the changes that come with MS. In her spare time, she enjoys cooking, gardening and spending time with the family dog.

Leave a Comment

Thanks for sharing your thoughts with the community. Please note comments are moderated.


  • David Maskalick   Jul 7, 2018 9:33 PM
    My wife has been there for me since I was diagnosed with progressive MS in 1987. I know how much effort it has taken for her to accomplish things on her own because of my fatigue, reduced balance, coordination, memory, and ability to solve problems limiting how much I could contribute to completing tasks. I’ve been on disability leave since 2000 when we had my wife’s parent move in with us so my wife could care for them as well. We have cats we both love but I do the gardening myself. my wife is utterly amazing as I imagine you are too.
  • Jackie   Jul 19, 2018 1:50 PM
    Thank you so much for this article!! My husband was diagnosed in 2013, and I've never met anyone who can relate to the things that we deal with, both individually, and as a family. It's nice to know that we are not alone.
  • Cecilia Vickery   Jul 19, 2018 2:52 PM
    Thanks Kate for letting others know how you and your family are handling MS! It’s reassuring to others who are having to deal with life with MS. I’ve had MS for 20 years and I’m constantly seeing the positive things in life which has helped me get over anything that MS might cause me.
  • carol woods   Jul 19, 2018 2:54 PM
    hello, my husband also has ms. I go to work and come home and look after him. I think that you are amazingly awesome. my husband is no longer working but he does keep himself occupied until I come home. I am also his advocate. thank you for sharing
  • Dale Rounsaville   Jul 19, 2018 6:56 PM
    Dear Mrs McCaughey, reading about your life made me forget about mine for a bit. Thank you. Thinking here is someone who “speaks my language.” Well done and keep fighting the good fight!
    Dale R diagnosed 09
  • Maria   Jul 19, 2018 9:54 PM
    This brought tears to my eyes. I was diagnosed with MS in 2011. What your husband is going thru, is what I am feeling. My husband is my advocate and has taken over so many of the household duties. To hear your story makes me realize we are not alone.Thank you for sharing and bless you.
  • j   Aug 3, 2018 2:35 PM
    Why not do HSCT?
  • Chad   Aug 17, 2018 12:34 PM
    My wife has MS and was diagnosed when we were just out of high school. 15 years later and we still struggle on the back and forth battle with MS. Articles like this, let me know other families can relate to our life together. This article put a smile on my face and I want to thank you for sharing it. My wife is a true MS warrior and it kicks her butt every day but she never stops and keeps pushing on. Thanks again for sharing your personal life
  • Rosalynn Johnson   Aug 18, 2018 12:16 PM
    This is very encouraging, I was diagnosed June 2011, and I had to end work July 2015, i receive Tysabri Infusions once a month and I have a 7 year old daughter who I try to do as much as I can with but many times I can't. I try to explain what's going on with me to her, sometimes I feel she gets it but other times she definitely does not, her father and I are not together and it my mom that helps me with her but that's a whole other story. It's good u are there for your husband and children, i pray for support like that, I know God is with me through it all. I wish you and your family blessings in all you do. Take care and have a good day.