New Baby and New Mom: Parenting with Multiple Sclerosis

  • Bringing home your first baby is a tremendous experience for everyone. But doing the same when MS is part of that ride home makes for even more question marks than that little person inspires. The time just after Madeline was born is so clear in my mind, in spite of how little sleep we had. It was a time when our emotions ran the gamut. Going from the recovery in the hospital where our every question was answered and every need resolved to our return home and the joyous, yet unnerving, chaos that followed. And no one checking in to make sure we were doing okay. 

     

    How could one go from being a reasonable, intelligent 33-year-old who was in control of her life (besides the MS, of course) to a seething, know-nothing, sleepless idiot? I had no idea how easy that transition would be! By this point in my life, I knew how to do what I needed to do— get up, go to work, do work, come home, dinner, movie, talk with husband, go to bed, enjoy recreational activities and then sleep; lather, rinse, repeat.  At this time, we had freedom to spend time as we liked. We chose to do so by researching and planning the pregnancy, the birth and even a little of the actual baby.  There was plenty of time for wondering and planning and stressing and calculating and ovulating and conceiving... and checking and growing and waiting and growing and learning and expanding and planning and waddling and contracting and counting and breathing and delivering and BAM. Now go home and figure the rest out yourself!

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    It was a true ego blow to our adulthood, which we thought we had mastered. In this swirling new reality, we had to start from scratch. Learning how to use all the new “tools” we need for our new baby was an unending challenge every step of the way. The co-sleeper, the tiny clothing, the changing table, the high chair, the car seat, the swing, the diaper disposal magician, the breast pump*, the stroller, the carrying seat, the metal frame to carry the carrying seat....  sheesh. Anyone who has had a child since the baby-marketplace exploded knows that I am only scratching the surface here.  So, while learning how to use every necessary item, and oh... the baby too, we flailed in our newfound ignorance. But do not fear, we eventually got “used” to the new schedule of not sleeping, diaper changing, shoulder burping, butt wiping, tear calming, baby rocking, football holding, 24/7 milking, and of course, parent flailing! Whew, that was a tough schedule. (Just typing it makes me exhausted!) And all of this new anxiety was nestled uncomfortably in the complex uncertainty of my MS - and how it would impact this adorable, loud being we brought home.

     

    While these are the ingredients to drive anyone a bit bonkers, it hit me especially hard. My post-partum was filled with an uncertainty that was different than most. I was so frightened of what my MS would become; I doubted whether I would be able to care for my baby and myself. I imagined limitations that seemed inevitable.  So lets just say, that I was speaking to myself through a serious post-partum filter, unable to find optimism as it hid behind the frustration of our new life requirements.

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    This combined uncertainty of how to live and care for our baby and the fear of what role MS would play in our future was all-consuming. Each speculation fueled the other in a fast paced game of Queen of the Hill. The mix was toxic and virtually impossible to see past.  I would say that my fears and ultimate depression were the hardest elements to deal with as they touched everything, everyday. And with sleep so dramatically compromised it all seemed like a cruel joke. 

     

    I should mention here that I am a huge fan of therapy.  Not physical, although that certainly has its merits. I am talking serious mind crunching, life exploring, teenage recounting, dream interpreting, self-realization-ing, aha moment-ing and how does that make you feel-ing. It’s been an important part of how I do life for the last two decades and I have no plans on quit-ing. It was very helpful to have this in place when post partum depression set in.  Without therapy, it may have been difficult to identify, considering the vortex that was our everyday back then. Depression hides in the cracks and is often incognito.

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    Therapy made this time manageable.  Having the counsel that validated my experience and wise words helped me to see that I might need a chemical boost - priceless. With a call to my neurologist I was able to start on a low dose of Zoloft, which helped with sleep when that was an option and didn’t interfere with breast-feeding.  And though it took a while to work, it did get me to where I needed to be to find confidence that I could care for Madeline and myself. Oh, of course Keith (my husband) helped too! Wink

     

    One very valuable recommendation came from a nurse in the hospital that I spoke to near checkout time.  She suggested that I nurse Madeline in bed. This would make it much easier to get through the initial weeks of interrupted sleep and constant nursing. While sleeping with your baby is a lightning-rod for opinions, this turned out to be very meaningful advice.  Doing this allowed me to sleep without regularly getting up, walking to her room, getting her out of her crib, sitting in a chair, putting her back to bed and getting back to bed myself. While this seems like a challenge for anyone who has just had a baby, to do this while living with MS is not only a major effort, it carries risk as well.  So we slept with Madeline. All night long shared the warm cozy bed and intermittently she nursed and slept almost seamlessly. It was a sweet time that I remember very fondly.

     

    The first few weeks after Madeline was born I experienced the difficulties that any woman might be going through after giving birth. And while being depressed during post-partum is also not uncommon, getting through this with Multiple Sclerosis was much more difficult for me. If the symptoms and flare-ups were kept at bay during the six months after she was born, there was a very real concern of how my future with MS would impact Madeline.  For me, having this to add to my list of wondering, pondering and considering would have been helpful. All of these things considered, once I benefited from the Zoloft booster it was easier to find some magical moments with our new family. Because after all, three is the magic number, yes it is, it’s a magic number.

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    *I pumped breast milk and froze it, feeling that I had to go back on Copaxone in a timely way. In retrospect, this was more challenging than it was worth. Of course now they recognize that breastfeeding may delay further MS symptoms; one more thing to consider.

     

    NOTE: This is the second part of a series about MS and parenting.  For the first part, please check out MS aParent: Pregnancy and Other Whimsical Decisions When Living with MS.

     

     

Published On: April 19, 2010