After being diagnosed with multiple sclerosis, your family changes in a lot of positive ways. Because I think that you become closer than you ever thought you could. Also a lot of negative is there. You have to give up a lot of things you wish you all could do together. There were a few day-to-day things that had to change when I was diagnosed with multiple sclerosis. I needed a little more help with a young child especially, and I still need help a lot.
I have days where I just don’t have enough energy to do the things that I need to do, and so one thing that we’ve changed is accepting help. Even though that is not an easy thing to do when you are a mom, cause you want to be able to do it all. Another thing that changed immediately for me was putting my priorities in order, and my priorities were obviously family, friends, faith -- all the things that really make me tick. And just not sweating the small stuff so much anymore.
Not feeling like I had to accomplish everything, that I had to be the best at this and this, and everything had to be perfect. I let go of perfect really quickly. So I could enjoy the good times, all of that, with the people I care about. Explaining multiple sclerosis to children is difficult, and there’s not a lot of information out there. There’s no handbook, and my view on it was total honesty.
My daughter was 2 ½ when I was diagnosed with multiple sclerosis. And at that point, she didn’t really know a lot was going on, but she definitely knew there was chaos in the family. I let my daughter know that I had a disease and that we were going to work through it. And that just because mommy had bad days, she was gonna have good days, too. And that no matter what, mommy was there for her and always would be. Since that time, she’s now 11, and I feel it’s very important that very quickly we got her involved. And we got involved in fundraising in working with the MS community.
Open communication and keeping her informed is another way that I feel like she and I are empowered. And also a way that keeps that fear at bay, that just because we don’t know what tomorrow’s going to bring, that doesn’t matter. What we do know is that we’re going to get through it. It’s not a death sentence, and especially if you have children. Keep living your life. Live it to the fullest. Do everything you can to adapt to your new normal
and just go on with your life as you would have it. Make adjustments, but don’t stop.