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?

Trust Your Gut

DSC02042.jpgAny parent knows that one of your biggest jobs is being your child’s advocate. You can advocate for them in medical situations, school issues and even with social disputes.

One of the most important parts of advocating for your child is trusting your gut. You know your child best and usually your gut will tell you when something is just not right. I think parents tend to discount this factor especially when it goes against what experts have to say. Sometimes we know what is better for our child, even more so than doctors.

Doctors, teachers and other authority figures try to do what is best, but sometimes the subtleties of our kids can be lost on them. We as parents can see these things daily and know when something is wrong or just not working. You just have to trust your gut and speak up. It isn’t easy to do but if you have the strength it can be powerful for both you and your child.

When Jack was a baby we as new parents didn’t understand the power of trusting your gut. I had a feeling that more was wrong in those early months, but didn’t know how to say it to the doctors in a way that made sense and not like a desperate mother. We eventually found out that there was more going on with him and I learned to trust my gut.

Have you had to advocate for child in medical or other issues? Have you had to trust your gut?

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