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A Letter to My Parents: WE are Living with SMA

Parenting isn’t a job for the faint of heart.

I live in a world full of adults living with disabilities, and I have the great privilege of seeing the amazing work they’re doing. Advocating, making amazing changes in our systems, fighting for rights, breaking down stereotypes.

Learning to fight for myself and my needs

I can’t help but wonder where this zeal and passion comes from--for showing the world all that we are capable of.

I think everyone’s story is different. For some, the tenacity comes from a deep desire to see change. For some, the struggles they’ve had to overcome shaped them.

For me, it’s a combination of life circumstances, but I would have to say a large amount of the credit goes to my parents.

I was blessed to have parents who fought for me and then taught me to fight for myself.

The impact of SMA on parents and caregivers

Yes, the person with the diagnosis is the one who is “living with this diagnosis” every day of their life. But the parents and caregivers are there living with SMA too.

They’ve made sacrifices. They’ve endured shattered dreams, they’ve had to pivot, they’ve had change plans.

A letter from my heart to my parents

“Mom and Dad,

When you found out that you were having a little girl, I can only imagine the dreams you saw in your heart.

Dreams of ballet class and playing hopscotch. Dreams of sleepovers with dance parties, and walking me down the aisle someday.

When you then found out that your little girl was diagnosed with a disease that you knew nothing about, I can only imagine how those dreams began to fade in your heart.

Coping with a new diagnosis

But the thing that amazes me the most about you both is your ability to pivot with what life throws at you. Those dreams that you had in your heart, you did not let fade to black.

Instead, you pushed them to the front and found new ways to accomplish them. You taught me how to dream, you taught me how to go after things in life with tenacity. You taught me to never back down, to fight for what I need, and even more so fight for what I want.

Yes, I live with the unique situation of life in this chair. But the reality is, so do you.

Parents sacrifices and endless care

I see your sacrifices. I see the things you’ve laid down so I could have my needs met. I see the things you’ve missed out on. I see the endless care you give.

Please know your sacrifices have not gone to waste.

The extra doctors’ appointments, therapy sessions, special precautions and concerns during the sick season, accommodations at school or the workplace, extra thought into how we will travel as a family, all of it!

You’ve had to go the extra mile, always considerate of the extra thing. But the extra has allowed me to live my best life.

I owe my success to my parents

This life can be hard. But understanding that everyone goes through hard things in life propels me forward. Even with the diagnosis of SMA, so much is possible.

I truly believe that, deep in my heart. Because that’s what you have laid out as an example to me. I get to be a wife, mother, and business owner because you taught me anything is possible.

Love,

Your daughter Megan”

Thank you to all the parents and caregivers

Thank you to all the caregivers and parents who are continually doing everything they can to make sure that the ones with SMA have the best opportunity to achieve the best life possible.

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