Counting Down to 40 – Being an Advocate

Jack pH probe.jpgAs part of my Counting Down to 40 series I will be writing about things about myself of which I am most proud. The first in the series is the importance of being an advocate.

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?

Advocating For Your Child: The Right Doctor

Jack NG tubeBeing your child’s advocate is one of the biggest jobs of being a parent. It is also one of the hardest jobs no matter what situation — medical, school or social.

In medical situations it is very important to find a doctor that is truly in your corner. The doctor will help you navigate situations that normally parents wouldn’t be able to do as well.

We are so lucky to have our pediatrician. She has been with us since Jack was born. She backed me up and believed me when other doctors didn’t. We have spent hours on the phone talking through all of the issues and challenges along the way. She moved mountains to get us in to see the specialists we needed to see. She will tease me about my notebooks and my questions, but she will sit and answer them all.

When we were deciding if we were going to implant a G-tube to feed Jack, our pediatrician organized a meeting with our feeding specialist, GI doctor and herself. It was so helpful to have everyone together and feel like we were finally being heard. We never would have been able to get all of those people together without her support. Years later, our boys are healthy and thriving in many ways due to caregivers like Tracy.

Your support doctor doesn’t have to be the pediatrician or general practitioner, you just need someone in your corner.

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