One night, when your older brother was a baby, I was pushing the stroller on a walk and your daddy offered to take over, but I wasn’t sure I would be able to stand if I let go. After lots of tests and doctors’ appointments it was confirmed, I have multiple sclerosis and I was in the middle of a months-long attack.
As we sat in the doctor’s office and listened to the results and the next steps, all I could say was, “This is severe.” This is the biggest deal I’ve ever dealt with. My thoughts flashed to my mom’s friend in a motorized wheelchair with a husband who carries her to bed every night. That’s what I knew about MS, and the life I thought we would have became instantly out of reach.
The chance of ever having you was gone. A neurologist even said to me, “Getting pregnant right now would be terrible for your prognosis.” I got it, I would hardly be able to take care of myself. I could never handle another child. At that point, I honestly hoped it had been an inoperable brain tumor, quick and definitive.
I’ve since done my research and redefined my impression of what it means to have MS and it’s actually better than a brain tumor. A year and a half later, I’m arguably healthier than I’ve ever been. With my new neurologist and OB’s blessing, here we are. Your little life is just beginning inside me and I am filled with so much hope. As we begin this journey together, I know that some things might be hard. I need you to know that we’re already prepared for all the hard things. Our little family will have the best life together.
First, we need to embrace uncertainty. No one knows how bad my MS will get or how fast it will happen. Within years or decades, I may go blind, I may be unable to walk, I may forget your name or where we live. But maybe not. Either way, I hope my MS will teach you a certain form of compassion and resilience that one can only know when faced with adversity.
We don’t know what will happen next. The secret is, this is true for everyone. We are lucky to be acutely aware of this reality. I’ve gotten really good at taking hold of what we can control and making the most of what we do know for certain. For starters, though he’s only two and a half, I’m certain that your older brother will lead you into this life with a perfect blend wisdom and enthusiasm. He is an old soul for certain. Your dad is superhuman, super funny, and ready for any challenge. He and I are a phenomenal team and you can always be certain that we will work through any uncertainty with determination, humility, and humor. We are certain that we will give you the best life you deserve.
Also, we need to do things while we can. I hate running; I never saw a point. But I trained and ran a 5K while I still can. Other moms probably don’t intentionally stand in photos, because they don’t know that one day they might not be able to stand. I am determined to live our life to the fullest while we can. This means showing up at the YMCA pool at 7:30 a.m. because we’re awake and we can swim! It might also mean mowing our elderly neighbor’s lawn because you can, and you should. (Fair warning, we don’t sit around much in this family.)
Speaking of things we can do, we need to find a cause and a damn cure for this disease.
When I was diagnosed in 2016, there was little known about what causes MS. It’s suspected that it’s some combination of environment, genetic predisposition, and possibly a virus. It could happen to anyone. No one knows why I got it, no one knows how bad it will get, and no one knows how to cure it. I hope so badly that research teaches us more about the disease as quickly as possible and you don’t end up having MS too.
While hope is great, in a conversation about work, my sister once said, “Hope is not a strategy.” She’s right, we need to do things to make this go away. We need to raise money for research, we need to celebrate breakthroughs and we need to share how MS affects our life with everyone. We need more awareness, more advocacy and more funding. Right now I’m doing my best and I can’t wait to see all of the ways that you and your brother become advocates to fight against this disease. We need another champion just like you in our corner.
I am so hopeful that, by the time you read this, MS has had little to no impact on your life. If this great hope is not our reality, at least know how deeply loved you are and how incredibly inspired I am to be your mom already. You and your brother are the reason I work to stay healthy. We are a resilient, positive bunch of people and I will do everything I can to pass these positive qualities on to you. MS does not define me and I am doing everything I can to ensure that it does not define your life either. We can do this. I love you all day, every day.
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