Why is it when you become a mother suddenly that is all you are defined by? What happened to the person you were before? All the things you love and the things you loved to do? Where does that all go? Why are women always under pressure to keep things in their life separated. We are more than a one trick pony! We were someone long before we had our children, so why can’t we continue to be that someone and love our babies all at the same time?!
You’re probably wondering where all this is coming from. Well, I have received a lot of criticism since my blog started branching out into the lifestyle space. And that’s okay. My dad once told me, “Opinions are like a**holes. Everybody has one”. (Thanks dad, I knew someday I would get a chance to reference that!) I did, however, want to take the time to use this space to explain why I chose to revamp my blog and why it’s branching into other categories besides my sons rare disease.
My heart, soul, & inspiration
I think it is important to note, that yes, this blog wouldn’t be here without my son Owen. He is the heart of this blog and always will be. He inspired this effort and continues to do so everyday, whether it’s a direct post about his syndrome, or an ad for something I love. So many people think that because this blog was inspired by him that is all it should revolve around. There are a few issues with that. The first, is that his syndrome is exhausting. It’s emotional. It’s tiring, worrisome, and frightening. There is so much uncertainty around it that I could and usually do, drive myself crazy.
It is important for people to realize, that mothers who have children with rare diseases, are consumed by them even if we do not show it. Even if we are not posting about it everyday, you better believe it is on our brain 24/7. Another important thing to note, is that I am more than the mother of a child with a rare disease. I am a woman. One who enjoys clothes, coffee, sports, sales, DIY projects, beer, wine and so many other things. I am a woman who loves her family fiercely and will advocate for them as hard as I can. But I will not lose who I am while doing so. I am more than a one trick pony.
Love all of who you are
I have other aspects of my life that don’t always revolve around my children. And that should be okay! Why should I have to separate them? I have more of a story to share than just the struggles and triumphs with my sons Beckwith-Wiedemann Syndrome. It is important for mothers with children like mine to realize that their life does not need to be defined by their child’s diagnosis. BWS does not need to consume them day in and day out. It is okay for you to love aspects of yourself beyond your children. I have many other aspects of myself that contribute to who I am that have been apart of me long before I was blessed with my beautiful boys.
It would be completely inauthentic of me to only talk about Owen and his rare disease. Why? Because I am not just his mother. I am also the mother of a 4 year old boy who has his own story. I am the wife to my high school best friend and that is its own story. My family is more than just Owen’s syndrome. It wouldn’t be fair to myself or the rest of my family to think or portray it otherwise.
You define who you are
Beckwith-Wiedemann Syndrome is something I never want my son to be defined by, so why would I let it define me and my blog? It will always be at the core of what I do in this space. I will never stop raising awareness for it or connecting with mothers who feel alone when receiving this diagnosis. I will never stop advocating. But I will not have it be all I ever talk about or all I ever share. That would be the exact opposite of “Living Larger” than it.
Share all of what makes you “You”
So, if you see me sharing a favorite pair of jeans or a product I absolutely love, it’s because I want you to know there is more to my family and I than just Beckwith-Wiedemann Syndrome. I am doing my best everyday to live larger than BWS & the possible cancer diagnosis that can come with it. Depending on the day, that may mean sharing some of my favorite finds with you. It may mean sharing our current struggles with Beckwith-Wiedemann Syndrome. Or, it may mean sharing a little dose of inspiration or a random thought or story that is on my mind.
I am happy and grateful to take you along with our family while we continue to navigate the uncertainties of BWS and the uncertainties of life. Most of the time those uncertainties overlap and intermingle. Life is not just one road you take. It’s several. And all those roads make up who you are, so I plan on sharing every single one of them with you…