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Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a rare form 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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Through Their Eyes

Hello, welcome to another week here at Humbly Courageous! I hope you are all making your way through this winter! In Indiana there seems to definitely be an endless string of dreary days. I feel like I’m not as affected as others I know that are very depressed by the lack of sunshine. However, when the sun comes out and it is so beautiful, I think to myself, I may be more affected than I think I am! It’s always so nice to see the sun even when it’s cold out. 

I’ve written blog posts about my two sons before. I’ve shared that I carried each of my boys to full-term and delivered them both by cesarean section. I’ve shared what it was like to be pregnant with a disability and what that looked like for me. They are the true joys of my life. I credit them for my drive to stay motivated to push myself. I asked them both if they would be willing to share their thoughts this week on what it has been like having a mom with a disability. I felt their perspective could be helpful to others in a similar situation, and just shed a light on the children of a parent with a disability. They both quickly agreed to share, which I honestly wasn’t surprised about. They have always been willing to help, and especially as they are getting older, now 15 and 19 years old. I think they see that having a mom with a disability has shown them some unique perspective and instilled an empathy that some wouldn’t have at their ages. So without further ado, I will share their perspectives.

All grown up pushing me around NYC 🍎

1. What is something that you have learned through having a mom with a disability?

Jack (15) Seeing things through a different perspective and how someone’s challenges can have a bigger impact on their life than what meets the eye.

Luke (19) From a young age it taught me to see from other’s perspectives. 

Luke mapping our way through NYC, Jack hitching a ride with mom 

2. What has been the biggest challenge of having a mom with a disability?

Jack…Having to do certain things like helping load the scooter in the car, carrying stuff around a lot, and other little things, but all of that becomes second nature and you don’t think about it much since it’s not that hard to do.

Luke…Trying to get new friends and strangers to understand could be difficult at times.

3. Do you see me differently than other moms, or am I just a mom that does all the things a mom would typically do for her child?

Jack..When I was younger I would maybe see my Mom as a little bit different than the other moms but the only thing that was different was the way she walked and everything else about her was the same as everyone else. Now that I’m older I don’t separate my mom with other parents since this is what I’ve known all my life and she works hard to be able to do a lot of the things a parent without a disability can do.

Luke…I have never thought of you differently. Your disability has never limited you from being a great mom and so much more. 

Team Humbly Courageous Muscle Walk

4. Do you see me as a strong and capable human being, as a person with a disability?

Jack…I do see my Mom as a strong and capable human being especially since she has to work extra hard to do things that would be easy for everyone else, and you have to be mentally strong to live with what she does and go about life everyday with the constant struggle of having a disability.

Luke…Even more so. I think your disability requires daily perseverance and resilience that makes you stronger than most. 

My beautiful boys give me strength 

When I sent them these talking points, I’m not sure I thought about how emotional their answers would make me. I hope they will always know that they are able to see these things in me because of their support. I love that they felt comfortable enough to share their true thoughts, especially on question #2. Being a child of a disabled parent has unique challenges, as well as a unique opportunity to see the world from a different perspective, as those with disabilities do. If you look at it as a gift, as an advantage, then it will be. Doing that takes humble courage and isn’t easy. I do think that in the end, it’s the best way. All families have their unique qualities that make them a family unit. Disability is just a part of ours. I’m so glad that I decided to take a chance on being a mom, not knowing what motherhood would look like with my disability, and having doubts if I could be the mom I wanted to be. I’m glad I proved myself wrong. 💚

For more on what pregnancy/parenting with a disability was like for me, check out these previous posts:

https://humblycourageous.blogspot.com/2021/02/becoming-mom-living-with-muscular.html?m=1

https://humblycourageous.blogspot.com/2021/02/becoming-mom-living-with-muscular_26.html?m=1



Comments

  1. You can tell they have been raised right disability or not

    ReplyDelete
  2. I stumbled upon your beautiful blog this morning. Literally stumbled as I try to learn to navigate my apartment with a paralyzed foot drop after a nerve injury at Thanksgiving. I curse that "drop" word because my newly diagnosed condition was "dropped" suddenly on me by a neursurgeon just in December 2022. I had never heard of it before. It was after an incompetent dentist in Bogota, Colombia who for whatever reason decided to give me an anti inflammation shot in my right buttock, hit sciatic nerve instead of muscle and incapacitated my right foot. Needless to say I cannot drive, walk without an AFO (which I haven't even gotten yet still in that denial stage of grief) or cane. I guess I am writing this to dig myself out of depression and anger and apologize to you for sharing my humble story when I read your incrediblely courageous and long journey recounting your own. I must admit I am a bit jealous you have such a wonderful family support system I have no family of my own close to where I live nor friends who want to drive the distance to visit and help out (live on an island off of Miami). I thank you for hearing my story. It helps to share. I'm just at the first steps of figuring out my new chapter in life. Long live Uber and grocery deliveries! BTW if you want to escape those frigid temps, you're welcome to hang in your own room in my condo on the beach and teach me some of your amazing lessons in living life. That's a real invitation!

    Best warm wishes,
    Helenapivarnik@bellsouth.net

    ReplyDelete
  3. Oh, these precious boys! Good work Mama! You and Jamie have done an amazing job. -Love, Gina

    ReplyDelete
  4. Both you and Jamie have had everything to do with the way those boys have turned out and we are all very proud of them and you and Jamie as well ❤️❤️❤️❤️

    ReplyDelete

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