Trust your gut every time

This past week, I had a chance to hang out in Portland, Oregon for a work trip. The cool part about working for an east coast organization while visiting the west coast, if you wake up super early and keep up with the east coast meetings and schedule, you can still enjoy the day. I had a chance to explore the town and meet up with some wonderful people in and near this city.

One of those people is Becca, a Born Just Right mom who used to blog about her son who was born with multiple limb differences. We have talked through this website and social media for years and years. But we had never met in person. Until this week. Honestly, our time together is another example of the magic behind this community. Nine years ago, I knew no one who parented a limb different kid. I had no resources. I was figuring things as I go and reporting out here. After talking to Becca, I realized some of the lessons I wrote about years ago are worth repeating.

As Becca and I talked about our experiences with therapists and prosthetics, a lot of our early experienced included a similar theme: We believed everything the doctors and therapists told us. But as we continued to parent our limb different kid, we both hit some moments where we had a gut feeling something wasn’t quite right. We know our kids better than therapists and prosthetists. And when our gut says something isn’t right… We’ve been right every time. Every. Single. Time.

With Jordan, this all started when she was a baby and we worked with therapists who were so convinced she needed a myoelectric prosthetic arm. When she got her first one at nine-months-old, it actually helped because it was so heavy. She built muscle tone she hadn’t been able to build and it helped her gain better control of her trunk and neck strength. That was a big deal. But once she was old enough to actually want to get the hand to work, it made her mad because it didn’t function that well. We built her a second myo even when it didn’t feel right during that building process. And that’s why we ended up moving to body-powered prosthetics. Becca had similar gut reactions with some experiences with prosthetics and therapies. In the end, we’ve always found our gut feelings to be correct. As we talked while eating delicious Portland ice cream, Becca encouraged me to write about this again. Because you know more than you think. We know our kids better than the experts. We want what is best for them, but sometimes you need to ask more questions and research beyond what your closest experts tell you. And when you learn more, you are empowered to help your kids in ways you may have never imagined. I have evolved as a strong advocate for my child… and it took some trial and error to get where I am today. You can too. Trust yourself. You got this.