It wasn’t until Owen was recently hospitalized that I realized how much of an impact he has had on people. Most of those people he has never even met. Choosing to share our family's story has turned into so much more than I expected. Sometimes it's overwhelming. Sometimes it’s stressful and quite honestly sometimes I wish I didn’t do it. But what I realized is, when times get hard for my family, that is when I really see the mark Owen is leaving in people's hearts. Although sharing our story can be hard and draining, I see the impact it is making. I see how helpful it is to others. Don’t get me wrong, I am in no way tooting my own horn. This isn’t about that at all. What it is about is the ability we all have to make an impact on others and to leave our mark, even when we never expected that was something we were capable of.
Leaving your mark usually means being uncomfortable
When I think about the impact our family's story has made on others in just one short year, I realize that every single person has the ability to create so much change for others. It’s not comfortable to share our story. A lot of times it is difficult. Sharing Owen’s smiles and laughs is the easy part. The hard part is sharing the struggles he goes through and the differences he has compared to other children. It’s hard as a mother to question if you are doing more harm to your child by putting him out there in front of the entire world. That question has been posed to me on numerous occasions. From the beginning, critics have always felt the need to make me feel like I was setting Owen up for destruction. Like somehow celebrating and highlighting the life and differences he has, in some way would draw negative attention to him.
Walking away doesn’t always mean walking backward
At some point in your life, you have to make a decision. You have to decide what is right in your heart. You have to decide what path is the right one for your family and loved ones. More often then not that path is not necessarily one you would have chosen. More often then not that path is treacherous. It has twists and turns and struggles you can't even imagine. That path most likely requires you to walk away from a life you once loved. A life that at the time you felt defined you. I have done that walk. I have walked away. Walking away from a life you once loved for one that comes with incredible uncertainty is extremely hard. I still struggle every day when I think about what my life used to look like. The life I had before my back surgeries. The life I had before Owen and his rare disease.
The unexpected and the feelings that come with it are OK
It is okay to feel those feelings. Those feelings don’t make you any less of a mother to mourn the life you once had. It makes you human. Your grieving a life you once had and you are allowed to do that. Grieving a life you used to have doesn’t mean you love your child any less. It doesn’t mean that you don’t still love the life you have now. What it means is that a deep part of yourself that you once loved and cherished is becoming someone else. Someone you didn’t expect. At some point, everyone goes through a crossroads in their life. It’s at that time that you have to decide how you are going to handle it. Will you succumb to the sadness of losing things about yourself that you loved so dearly? Or will you try and make the most of your situation and leave a mark or imprint in the hearts and lives of others?
What mark will you leave?
I have chosen to do my best to leave our mark. I have decided that although it's hard, God is leading my family to share our story. To share Owen’s life, his struggles with Beckwith-Wiedemann syndrome, as well as his triumphs. It’s not a road I would have chosen if you asked me ahead of time. Never in a million years would I have thought this is where I would be right now. But one thing is for sure. I would not change a single hair on my son's blonde little head. I love him more and more every day. He not only leaves an imprint on other's hearts with his story, but he leaves one in mine every day. He makes me so proud to be his mother and to know that he is helping bring hope to other BWS families makes the journey we are on so much easier. We decided how we are going to leave our mark. Now the question is, have you?
Live Large and Stay RARE.