Parenting is hard. This blog post could end here because the truth is that parenting is hard for all parents, regardless of ability. Parenting with a chronic illness feels in a league of its own.
I was officially diagnosed with multiple sclerosis (MS) in 2007. When my son, Jack, was born in 2016, my outlook on life shifted. I was no longer fighting MS for myself but now, fighting to give my son the future he deserves. While Jack was not a planned pregnancy, he certainly has been my greatest blessing. He gave my life the purpose that I hadn’t known was missing. As with all parents the first few months of his life were a challenge but adding in MS amplified those challenges. I worried that I would not get back to my previous baseline; I still haven’t. What I have done is learn to slow down, listen to my body, and accept my health reality for what it is. Parenting with MS poses challenges that others may not understand. While my son does not have MS, he certainly has to live with MS. I’ve always carried a lot of guilt about how my disease would impact his quality of life.
A pivotal moment was when I started really listening and talking to my son. Hearing about how, on the days that I felt defeated as a parent, he innately focused on the positive and fun parts. This changed my frame of mind and gave me comfort in knowing that I'm not doing such a bad job after all. My son doesn't see our adjustments as a burden, but as adventures filled with love. We could all be more understanding and forgiving of our shortfalls. All of us have things that make us feel insecure and inadequate; it’s how we handle those obstacles that truly matters. I choose grace and positivity.
My intention is not to make light of multiple sclerosis. My goal is to make the burden of a chronic illness lighter for children. I want to make it lighter for my child. My priority is to be a good mother in the eyes of my son; that is all that matters to me. I need to know that I am giving him the best life I can offer and that he is living a wonderful life in spite of my hindrances.
When Jack was born, due to my cognitive issues, I decided to write ‘letters’ about moments that I wanted to remember. Whether it be his first word, food, or the days that I felt I failed him as a mother. I would privately open up to my son about how precious he is to me, how hard I'm fighting to be a good mother, and how much I enjoy our daily adventures.
I have always tried to be completely transparent with Jack about my diagnosis; so when he turned two, I began to search for materials to offer him as support and affirmation that he isn’t the only child with a parent battling a chronic illness.
When I reached out to MS organizations worldwide for information, I quickly learned about the unmet demand for educational literature for children on chronic illnesses. I found that the materials were not geared specifically for younger children. I didn’t want to focus on sophisticated terms like ‘demyelination’ or ‘relapse’. After countless hours of research, I recognized the hole in the market and I became determined to fill it.
With support, tenacity, and drive; my children’s book was born. “Some Days: A tale of love, ice cream, and my mom’s chronic illness” follows a mother and son as they navigate through the unpredictable obstacles of parenting with a chronic illness. The recognition the book received has been moving and motivating.
Through interactions with people who've connected with the book, I've realized that we all place so much burden of guilt on our shoulders. When we stop to actually listen to the people we love the most, we will find that we are doing a pretty great job in spite of the hurdles.
I'm in no way a perfect parent, but I've found that creating meaningful memories with your loved ones is always possible. To me, it is about teaching them that they are resilient, loved, and going to be okay; even if their version of ‘okay’ doesn’t look like everyone else’s.
In closing, you and your love are all your child needs. Be proud of the human you are preparing for the world. Our children are kind, empathetic, and resilient because of these moments. Breathe.
I was diagnosed with Multiple Sclerosis (MS) in 2007. Following my diagnosis, I made it my mission to educate, advocate, and support others battling the disease. I work tirelessly to help lessen the burden each patient has to bear. My efforts have given me the opportunity to work with physicians, patients, and foundations across the Globe.
After the birth of my son in 2016, I shifted my focus to supporting the children of parents with a chronic illness. My children’s book entitled “Some Days” was created to normalize differing abilities and amplify how each of us can thrive in spite of the challenges. The movement I have created has changed the apologetic tone and transformed the child and parent’s experiences into uplifting stories that highlight the patient’s resilience.