Motherhood with Multiple Sclerosis– A Question & Answer Session

In this guest post, Katie Kulinski shares an interview she did with her sister-in-law Caroline Kulinski, who lives and parents with multiple sclerosis (MS). Both Katie and Caroline are mothers of daughters under 2. Each year, they participate in the Atlanta MS Walk to help raise money for the National MS Society Georgia Chapter. For information on how to support their team, see the end of the article.

Raising a toddler is hard work and for the healthiest of parents it is exhausting.  My daughter May is almost 21 months and since 15 months has wanted to be held during the night.  She cries for “Mommy” (a name I had waited months to hear is now being used against me at 3 a.m. most nights).  When I go into her room she reaches for me and promptly places her sweet head on my shoulder.  We cuddle for 45 minutes or more if I fall asleep.  Then I place her down in her crib and we both get some sleep.  We repeat this process each night.  It is an act that is both precious to me and exhausting to me.  I am healthy and I know that for a mother that has health issues these precious acts can also cause a deeper level of exhaustion.
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I am lucky to have my sister-in-law, Caroline, to talk to about being a mother.  Caroline had my niece Sabrina five months after May was born and is the perfect person to talk to about being a mom.  Caroline is open and honest and makes me feel comfortable talking about the challenges that go along with being a mother.  Although, Caroline was diagnosed with multiple sclerosis in 2007, when we discuss parenting she never brings up the challenges that come with having multiple sclerosis.

When Caroline was diagnosed it was a very progressive case of multiple sclerosis, she had paralysis in her left arm and the disease was forcing her to use a cane to walk.  Caroline decided to try a very strong drug at the time that had very high risk effects, including brain infection. Thankfully, Caroline was able to take this medication and it worked and started reversing the effects.  Caroline was healthy enough to get pregnant a few years later and then gave birth to my beautiful darling niece Sabrina.  So I thought the best way to find out how multiple sclerosis affects motherhood was to go straight to the source and Caroline graciously agreed to answer a few questions.

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Sabrina & May – Piano Recital

Motherhood with Multiple Sclerosis

Katie:  How did multiple sclerosis impact your decision to have a child?

Caroline: It was a big factor and we definitely went back and forth for a while unsure a) if I would ever be “stable” enough to risk getting pregnant and b) would I remain stable enough to care for a child if my MS continued to get worse and I had trouble caring for myself.  Having a child was something that my husband and I both really wanted though and in the end we felt the risks were worth it.

Katie: What was it like being pregnant with multiple sclerosis?

Caroline: A lot of women I know hated being pregnant and felt pretty miserable.  I was the exact opposite because while I was pregnant my MS basically went into remission.  It was the best I have felt in 7 years!! It’s an amazing phenomenon common with pregnant women with MS.  It’s the like the body knows that protecting the baby is more important!  It was so awesome.

Katie: How did multiple sclerosis impact you when you delivered Sabrina?

Caroline:  Having done a ton of research on pregnancy and labor & delivery in pregnant women with MS, I had read many patients tried to deliver normally and the MS reared its ugly head and they ended up needing a C-section because they couldn’t deliver on their own due to MS fatigue.  After discussions with my doctor, we decided to schedule a C-section in advance, as that was the safest route for me.

Katie: In what ways does multiple sclerosis play a role in being a mother, if any?

Caroline: In today’s society of “supermoms” who do it all, there’s a lot of pressure around being the perfect mom lately.  Every day I have to adjust my expectations about the kind of mom I want to be and the kind I am able to be and accept that, even with MS making things more difficult, I can only do the best I can do on any given day.  Many days that means dinner is takeout, or I’m too tired to take my daughter for a walk or to give her a bath and that’s okay.  It’s forced me to try and be more forgiving and accepting of my limitations and tell myself that I am doing my best for her every single day.

Katie: Do you have any advice for women with multiple sclerosis who are trying to have a baby?

Caroline: Talk to your doctors.  Get their opinions and then make the best decision for you and your family.  Because my MS had been so aggressive we opted to keep me on my infusion therapy until I got a positive pregnancy test.  Other women with MS come off of their MS drugs in advance of trying to become pregnant.  It’s a very difficult decision and one that only you can make.


Katie: Do you have any advice for mothers with multiple sclerosis?

Caroline: Ask for help.  Ask.  For.  Help.  I think the same advice is true for healthy mothers, but for moms with MS it is a necessity.  You cannot do it alone.  You will need a support system already in place that you can rely on.  I also think you have to make a (very tough) decision about whether to breastfeed or whether to go back on your MS meds immediately.  It is unfair we have to choose, but we do.  I chose to immediately go back on my infusion, for fear of losing the use of one or both arms again.  I was sad not to be able to breastfeed but having a healthy mom who could hold her baby outweighed the benefits of nursing, in my mind.  Again, it’s a tough decision that only you can make for yourself.

Katie: Thoughts/advice on being a mother of 16 month old?

Caroline: Will this child ever sleep through the night??? Haha.  Even after 16 months I still feel like I have no idea what I am doing, MS or not.  I guess all moms feel that way to some degree. I take it one day at a time and try to focus on the good moments and appreciate the days when I don’t feel terrible.  My daughter doesn’t yet know and certainly doesn’t care that I have MS.  I’m just her Mommy and right now I’m trying to enjoy that job as much as possible.

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Sabrina & May

Support Team Wearing Red Shoes in the Atlanta MS Walk

Caroline Kulinski is a stay at home mom of a 16 month old and the team captain of Wearing Red Shoes, a team that participates in the annual Atlanta MS Walk.  The Atlanta MS Walk will be on April 26 at Piedmont Park.  You can learn more about Caroline and her team at http://nationalmssociety.org/goto/wearingredshoes. All you need to do to join the team is wear a pair of red shoes!

Katie Kulinski is a working mom of a near 21 month old.  Every year she participates in the MS Walk Atlanta with her team Wearing Red Shoes and their fearless leader Caroline.  All donations help benefit the National MS Society Georgia Chapter.  http://main.nationalmssociety.org/goto/Katie_Kulinski


Comments

  1. says

    I have a girlfriend with MS who has a 3 year old son. Fortunately, she is doing very well, but we all know that may not be the case forever.

  2. says

    Thanks for sharing your personal story. When it comes to MS, I mistaken think of it as something that affects older people. Glad you were able to have your daughter – she is so precious.

  3. says

    This was such a touching post. Although I have done the walk before, and know a few people who have struggled with MS, I was not aware of the advances of the available medical treatments. It is so great to know that the drug worked out for her.
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