I hope you’ll enjoy this interview with Meagan Freeman, a California writer and mother of six (!), who is living with MS. Her blog – Multiple Sclerosis, Motherhood and Other Traumatic Experiences – is one of my favorites, and her book The Hero of the Story is an inspiring read. Meagan writes with warmth and wisdom, informed by her experience as a mother with MS and a nurse practitioner. And I’m thrilled to share her thoughts on parenting and MS with you in this Mother’s Day Q & A.

I’m sure most people reading this are wondering: How on earth does she manage with six kids and a chronic illness like MS? So tell us, how DO you do it? 

As a mother of six, I have very little time for anything. Simply using the bathroom takes planning and precise timing, so I clearly did not have time for the diagnosis of multiple sclerosis. On August 24, 2009, my life changed dramatically when I heard those words. I was a 34-year-old emergency department registered nurse, a mother of five/stepmother of one, and a full-time student at the time of diagnosis. My husband is an emergency department physician, so he has an insane work schedule, as well. Who has time for this?? I have kids at home who need laundry done, dinner needs to be made…. and all I could think for so long was “Why me?” I quickly snapped out of that mindset. I am fortunate to have a tremendous support system, because I certainly could not do this alone. I was able to complete my Master’s program after diagnosis and become a nurse practitioner, and I worked for two years in that capacity. Between six kids and full-time work, however…my illness finally caught up to me last year. I had to call it quits, and now I am home full time with the kids. Working was not possible anymore due to illness progression, so that has been my largest adjustment since diagnosis, and I truly grieved for the loss of my career. But I must say that I also breathed a sigh of relief at having a bit more time to rest – at least while everyone is at school! Having a support system is essential for any parent with MS. It truly takes a village.

What have you told your children about your illness? How did you go about it? And why did you decide to share that information with them?

Initially, I told them very little, but as time has gone on, I have shared much more. I believe that many people are afraid to share information with children regarding illness, but this really isn’t the best approach. They aren’t as fragile as we might think, and often, the lack of information is more fear-provoking than having some concrete, factual information to work with. If we share age-appropriate facts with them about our illness, they will have a much better understanding of the disease, rather than creating a terrifying image in their minds. I had to create a different “speech” for each child due to the huge variety of ages in my house! I decided that I could not hide my illness, so I needed to share. I told them exactly what causes my illness, and that I was not going to die, but that I would have numbness, weakness, fatigue, and sometimes I would just not feel well. The older children got a much more detailed explanation.

How did they react? And how have they adjusted since?

At the time of my diagnosis, my kids ranged in age from one to eleven. They were so young that they really had no understanding of MS. I did my best to explain it, but I did so in a very age-appropriate manner. I tried to protect them from it as best I could. I did not feel that sharing this information with them at that time would benefit them, and may serve only to cause fear unnecessarily. I felt that I would share things as needed, as they occurred. In the seven years since the diagnosis, the kids have become much more aware as the disease has made itself known. It becomes much more difficult to hide! They have become so supportive, so kind and loving. If there is something positive to come from this, it is that my children have learned to show kindness and empathy.

Do you worry about your children getting MS? What fuels that fear? And how do you keep it in check? 

I understand that the statistical risk of my children getting MS is only slightly greater than that of the general population, but it still concerns me. Every parent worries about the health of their children, and anyone with a disabling condition with a genetic connection certainly worries about this risk. The risk is still low, but it seems to be slightly elevated, which is concerning. My maternal grandmother also had MS, and this clearly is something that adds to my concern. My grandmother had seven children, however; and none were diagnosed. This is another example of a case of learning to let go of unnecessary fears, uncontrollable situations and anxieties. I have learned to evaluate every situation: Can I control this? Is there something I can do to change this? If the answer is no, I let it go. Otherwise, the worrying does no good whatsoever, and actually harms me physically and psychologically. Easier said than done at times, though!

If you could offer one piece of advice to other parents with MS, what would it be?

If I had to offer one piece of advice it would be to learn to let go a bit, to stress a bit less, and trust a bit more. This is a very difficult task for people like myself: the planners, the organizers, the managers, the controllers, the deciders. The challenge is to bend and flow with the new circumstances of our lives. This is definitely not something that comes quickly or easily. But with time, focus, and patience maybe we can bend a little more instead of breaking. My mantra has become: “It could always be worse.” If we truly stop to think about it…it really could be.

In your book, you talk about the importance of leaving a legacy and writing a life story you can feel proud of. What do you hope your children (and future generations) will remember about you?

It is absolutely essential to me that my children remember these happy moments. The laughter, the smiles, the joy and the love. These are the moments that need to be remembered. These moments are the reason we are alive. I spent many of my younger years in a very career driven state, focused on education and job success. I have no regrets about that, but I have become much more aware of the simple things in life due to MS. I have started to search more for happiness than success;  fun more than money. I hope I am remembered as someone who faced things with some degree of courage and did not quit. I hope I am seen as someone who faced challenges head-on without fear, and refused to give in and give up. Most of all, I hope my husband and children felt loved beyond words, because that’s how much I love them. They are my world, and they are the reason I go on when I feel that I can’t possibly take another step.

You can follow Meagan on her blog at www.motherhoodandmultiplesclerosis.com or on Twitter @MotherhoodandMS.

The Hero of the Story

My favorite Freeman posts: