When Jack was born I expected to become a mom and have the mother bear instincts kick in, but I didn’t anticipate the importance of becoming an advocate. Quickly after he was born, certain medical issues presented us with situations that we weren’t prepared for and forced us to learn how to navigate through trial and error and support from our pediatrician. Through those situations I learned to believe in my instincts and how to be strong for my child and advocate for him. Those skills helped me be a much better advocate for our second child, Will, right after he was born, and also be an advocate to others through this platform.
The Will to See was started as a coping mechanism for me through a difficult time in Will’s infancy that included diagnoses of swallow issues and Ocular Albinism. As time has passed, I have been using this experience and the voice created through this blog and other relationships tell our stories while providing information and hope for other families in similar situations.
During our struggles with Jack’s eating there weren’t any resources or people for us to call on. We felt like we were flying blind in very difficult situations. By making our experiences available through this public medium, I hope that I can provide support and ideas for other families. Even if it is just saying that I have been there and I know how difficult it can be.
This role of being an advocate is one I am very proud of. I have always felt there is a reason why we have been challenged in these ways, if for no other reason than to help others through their situations and provide a light to follow when it was otherwise hard to see.
There are times when I get frustrated with page views and other site statistics. Then I will get an email from a family whose child has a feeding tube or has just been diagnosed with Albinism and I remember why I put in the time and effort. And if this helps just one person to better navigate the lonely and heart-wrenching roads that we traversed, well then it was worth it.
Have you found yourself creating a different role for yourself now that you have children or are put in a situation that you didn’t expect?