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What I've Realized Since Becoming a Mom With a Rare Disease

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Samantha and her children in the hospital
Samantha and her children.

I am the mom you see at the school our kids attend together.

I am the mom you sit with at T-ball practice.

I am the mom you attend church with. Did you notice anything?

Did you see me almost fall asleep during a sermon?

Did you see me not holding my toddler? His dad usually is the one lifting and carrying him everywhere.

Did you see me not running with my 5-year-old and just sitting on a bench?

I have done all these things, but you probably didn’t notice. It’s really not that big of deal.


I am the mom with a rare disease, a chronic illness. I have Marfan syndrome, a connective tissue disorder I’ve had since birth. It can affect the eyes, heart, back, joints — so much.
Being a mom with a rare disease can make it extremely difficult to lead a “normal” mom life.

I want to run, jump, play, lift children and the list goes on and on.

But I can’t. It took me a hot minute to realize I am not the mom who can chill with her kids on the floor for hours playing trucks. These rods in my back for treatment of scoliosis do not like to be unsupported for long. Oh look, the baby wants me to carry him around because his little cute legs are getting tired. That’s a big no! The rods will not allow me to handle anything over 10 pounds for longer then 10 minutes. They don’t care how cute and sweet that baby is. They will wreak havoc in the morning for me testing their abilities.

I hope the sarcasm is starting to show.

Samantha's husband and her children.
Samantha’s husband and her children.

How about a nice game of tag? Nope, my heart can’t take the pressure. Palpitations are a great indicator it’s time to sit and take a breather.

Am I tired because I am a mom, or am I tired because of the disease? I think it’s both! Why can’t I be “normal?” Sadly, I started asking myself this question at a very early age.

Here is the deal.

There is no “normal” mom. We all have to figure this “mom gig” out, rare disease or not.
My boys have no idea what Marfan syndrome is, or that I even have a rare disease. They go to doctor appointments with me. They have seen me in the hospital and they don’t question if I have to take a “break” and sit for a few minutes.

Without even knowing it, I created these attentive and caring children.

My medical flaws have shaped them, and will continue to shape them. My hope is they will grow into amazing adults  who will look past a flaw and see the person, not the condition.

My rare disease does not define my parenting abilities. I am still learning at 31 that Marfan Syndrome does not define me. It is only a small fraction of who I am. It’s an extremely important part of my life, but it is only a piece of the puzzle that makes up who I am.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? Check out our Submit a Story page for more about our submission guidelines.

Originally published: July 11, 2016
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