Being a New Mom With MS

  • I’ve been a mom living with MS for over eight years, or eight and nine-tenths years as my daughter Madeline will happily point out. She’ll also remind me that my mommy-hood will be nine on August 26th. And though my MS will turn 22 in June, I can safely say that one of my biggest challenges in these two decades began on that same date; the one Madeline counts to the tenths. 


    I had no doubt that I wanted to be a mom in spite of my fears of  not knowing how MS would affect me, or our little person. (Oh.... Madeline just asked me to mention that she isn’t little anymore, that she is almost nine and by this time next year she will be almost 10, which is double digits.) With my first pregnant day - at least the one I was aware of - I started my drama of worry. Not only did I need to worry about how my life would change forever, I also had to worry about how my MS reality would challenge my mom-abilities. Cue the montage of Madeline’s growing years replete with the dramatic imagery usually reserved for a Steven Spielberg film. From dropping her as an infant straight through to falling down the aisle of her PhD graduation ceremony (and everything in-between); yes, I’d considered one high-risk scenario after the next. And each scene played out in the most tragic way, with violins and a John Williams score.

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    And while I hadn’t even birthed this baby yet I found myself wrapped in fear. Like everything else, I shared those worries with my baby sister, Leslie. (Madeline would like to point out that Aunt Leslie is not a baby, she’s 40 and that is really old). Leslie is always a good person to ask for help. If for no other reason than the fact that as a writer, she is very good with words. I was on the edge of my seat, waiting for her response. She started with, “So many other people with worse disabilities do just fine.” Hmmm. Nope. Not helping. (She’s not so great after-all!) But she thought for a minute and said, "Your child will always be lucky, no matter what you can or can't do. This baby will have you to guide her, to show an example of how to cope with the difficult things life hands you. You'll give her your strength, your verve. She'll have more to grow on than most. She truly will be very lucky." Dang... she’s great! But she’s 20 months younger! I’m the big sister, don’t I get to be the one who teaches her?  Ok, now that we are grown ups, or as Madeline says, old.... those 20 months aren’t such a big deal, right? So Leslie should stop bringing up that I will be 50 first! Right? Right. 


    Even with this new perspective, life with Madeline has been a challenge that grows and changes as fast as she does. And being that MS is constantly changing we have a lot of evolution going on in our purple house. As a baby she required every minute of our time and often it was only me who could give her what she needed. (Ah, nursing makes the mom even more special!) With the sleepless nights, the postpartum depression and new parent confusion, it was a rough road.  And as I did before she was born, I asked for help. I highly recommend this approach.  And all who were local, rose to the challenge.


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    This was helpful to have in place for the tremendous-twos when she ran everywhere and got into everything. An extra hand to rescue, or mouth to say “No” is very helpful. Of course the legs to run after her when she runs to the neighbors yard to stomp on their flowers is also very nice. Yes, every stage has had its own special challenge, but most of them were manageable. What I didn’t consider at that time, was that by living with MS I have learned to cope with the unexpected. And often I’ve risen to the challenge no matter how it played out.


    I’d be lying if I didn’t tell you that I’ve felt as though I’ve missed out on some things; the things that have made me jealous of my husband and Madeline’s friends’ mommies. I have. And I’m sure that there will be things that I will continue to sideline for. (Including but not limited to: running, jumping, walking, skipping, hopscotch-ing, shopping, sunning, soccer-ing, hot-weather-ing, ice-skating.) Though I’ve tried to concentrate on what I can do with her (talking, drawing, painting, reading, relaxing, laughing, movie-ing), she happens to be the kind of kid who wants to run around the yard, or spin till she drops, laughing dizzy. So the opportunities to chill are few and far between. My husband and I spend time planning things I can do, and it lessens that left-out feeling. But it's still there. So I take a moment to lament my loss and move on.


    And here I am, already the mom of an almost 9-year-old. (I’m loving this age!) She is a clever girl who takes charge of most situations and has a great sense of humor. In fact she cracks us up every day; we can’t write her comments down fast enough. (Did I mention l love this age?) At this point she knows all about what her mommy’s MS means first-hand. Nothing has been sugar coated and as a result she accepts my changing reality with ease. Mommy can’t walk fast or far. She gets dizzy a lot and can’t do summersaults. Riding a bike can be hard, but I helped her relearn that last year. Sometimes she can’t stand long enough to make dinner, or unload the dishwasher. But she is ok.  



    So Madeline accepts me and my limitations for the most part. Sometimes she gets sick of it, and quite frankly I do too. But one of the things that has helped is that she plays the part of  “mother’s little helper” and no, not the kind the Stones sing aboutWink Most times she is very excited to be helpful and to say how her life is different. She has to be more grown-up than her friends who don’t have a mom with MS. And she is very proud of that role. One that she has only had since she entered the third grade, which by the way is only for one more month, and then she will be a rising fourth-grader. Not to be confused with a third grader on summer vacation.



    If you liked this post, try the essay I wrote entitled Telling Madeline for NPR's “This I Believe”  as well as the other posts in my series on parenting with MS.  Please check out MS aParent: Pregnancy and Other Whimsical Decisions When Living with MS and MS aParent: Bringing Home Baby.

Published On: May 10, 2010