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Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a type of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

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Disabled Mama

Hello and welcome back, and if this is your first time here, welcome! As a parent, I know I’m not alone in thinking that I have made a lot of mistakes, and have regrets looking back on how I’ve handled certain situations with my kids. I have one in particular though that breaks my heart, and I knew when I was making the decision at the time that I would look back on it, and it would do just that. Break my heart. Still, I felt like it was the best decision at the time.


I was fortunate to work part-time when my kids were in elementary school. I worked three days a week and the other two, I used to take care of things I needed to get done, medical appointments, physical therapy, or to just give my body the break it was demanding. I was physically about as maxed out as I could be, with Jamie carrying me to my bed many nights because I couldn’t take another step. Motherhood is hard, and requires a lot of physical activity just to keep up. At my house, I cook all of the dinners, clean, and do a majority of the laundry. At the time I was also doing the grocery shopping, carrying it in and putting it all away (grocery pick up has changed my life!) It’s enough to wear anyone out! Laundry is the never ending chore, right?! Also, I should note the reason I do all of these things is my choice. I want to do these things as long as I possibly can. It provides me with a sense of, “pulling my weight”, which is a conversation for another time. 

I would often get emails from the boy’s teachers asking for help in the classroom. I would get a pit in my stomach when I would get those emails. Technically, I had the time to give, but going into a classroom full of curious, outspoken kindergartners and 3rd graders terrified me. Also, I feared my boys would be bullied because of my disability. We had a discussion about it, which I don’t know if that was right, or if I should have just confidently gone in and helped to educate the students on disabilities, even though I was feeling anything but confident. That is just not where I was at that time in my life. Also, I didn’t know any other moms around that were in my same situation. My boys always seemed hesitant about my coming in, but part of that was probably because of the way I presented it to them. I’m sure I sounded very uncertain myself because I was scared.

There was no guidebook for disabled moms, at least that I knew of, that could help me know the right thing to do. I did the best I knew how. I felt really isolated in this aspect. It was awkward because I knew the teachers knew that I had some time to give, but I wasn’t going into the classrooms. I wasn’t able to have that conversation with them, because again, that is just not where I was at the time in regard to being open about discussing my disability. I volunteered in other ways at the school, where I didn’t have direct contact with the boy’s classrooms, and donated needed items etc.

I’m still struggling to give myself some grace about this. It’s not a mistake as much as it is a regret. It’s a time in my life I can’t get back or change, and that is hard. I know my kids aren’t scarred for life because I didn’t volunteer in their classroom. In fact, I doubt they have even ever thought of it again. As they got into their later elementary years, I’m sure they were glad mom wasn’t there in the classroom volunteering, because that would be embarrassing in a different way, ha! I just always had this sense of being a failure surrounding that topic.

In hindsight, the way I wish I would have handled it, now that I’m more open to talking about my disability, is that I wish I would have used that opportunity to help to educate their teachers and classmates on disabilities. I should have discussed a plan with the teacher, so that I could have been more confident going into the classroom, so that hurtful remarks weren’t as likely to be blurted out. Often with little kids that’s just what happens. Being on the receiving end of those remarks is really hard, especially in front of a crowd. Most of the time though it’s just curiosity, and a great opportunity to help them learn that disabilities aren’t scary, they just make us operate a little differently, and that’s ok!


I’ve since then made about a million more parenting “mistakes”, but I hope by being honest and open about the struggles as a mom with a disability, that it could help someone like I was. Just trying to find her way, with very little to no guidance on how to do so.  It takes humble courage to be a mom with a disability, but it is by far my greatest joy in my lifetime. 💚

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  1. Thank a lot for sharing this awesome info. I personally like the last point and follow me in my blog. I love to share on social media. keep it up!!!

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  2. Thank a lot for sharing this awesome info. I personally like the last point and follow me in my blog. I love to share on social media. keep it up!!!

    disability

    ReplyDelete

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