Video Series: Kathryn On Being a Rare Mom

When you’re a rare mom your diagnosis isn’t always figured out and so in between trying to raise your children, you’re going to doctors and medical centers and trying to impart information about these crazy things that are happening in your body that you know shouldn’t be but no one knows what’s wrong.

In addition to being a mom, and a wife and doing all these things, you’re being asked questions whether or not you’re having a mental health problem and maybe that’s why you’re not feeling so well; or that you’re not 29 when you had your baby and none of us are 29 anymore so maybe that’s why you’re not feeling so well. Or are you sure you’re really having pain in your chest? Because you know you shouldn’t be.

As you’re trying to navigate all of these questions about your body that you know is now broken and has abandoned you, you’re trying to delight in your children’s firsts: first birthdays, first time they walk, first time they say something. In between, you’re vomiting in the kitchen sink or coughing so hard that your doctors are worried you’re ribs are going to crack and all you want to do is go to bed.

For me it was very painful, I wasn’t able to nurse either one of my children because of my health problems and for me it was very difficult the first few months of my daughter’s life. I wasn’t the one taking care of her, other people were. I think that for rare moms, we are always worried if we are good enough because we are experiencing something that nobody else we know has ever gone through. You know, most women don’t have trouble having their children, so when you’re suddenly sicker than you’ve ever been in your life after you’ve done the most amazing thing in the world with your body, there are really some parts of your soul that are hurting because you can’t understand why this has happened to you, at this moment, when you should be so joyful.

It’s a difficult balance trying to sort through all of those feelings and then at the same time you’re watching these beautiful creatures grow up in a world in which they’ve ever only known you as sick. And they see pictures of you way skinnier than you are in this current body and they see you with tags on your t-shirt from 5k’s that you’ve run and you can’t even chase after them in the park. They don’t understand how that can happen.

So I think that kids with rare moms, they spend a lot of time worrying about what they can do to make sure mom is okay because it’s scary for them.

So the hardest question that my kids have ever asked me was, “Mom are you gonna die?” I’ve had my kids say, “Mom are you ok?” when [I collapse] in the kitchen because [I] took a meatloaf out of the fridge from trying to make meatloaf for dinner. That’s really scary when they see you slide down with your back up against the kitchen sink because you can’t breathe. Those are scary moments for children.

To have to teach my kids how to use a EpiPen, to teach them how to dial 9-1-1 and make sure they know how to do it… that’s scary stuff for a mom.

That’s also really difficult to explain to doctors sometimes because that’s a worry that is on top of the normal maternal mom anxiety. You know, when you’re a young mom you’re worried about your kid falling or going down the stairs but I’m worried not only about my kids tripping, and falling down the stairs but also asking, “Is it too cold outside? Am I going to go into shock because I’ve been outside too long in the park when they just don’t want to come back inside? And how are we going to manage this?” Or if I’ve gone into the grocery store and I picked up a gallon of milk because we’re out of milk and suddenly that gallon of milk has caused my entire arm to go into hives and “Can I get home safely with my kids?”

Most moms don’t have to worry about those choices and that’s what makes being a rare mom really hard sometimes.

Do you have a rare mom experience? Share it with us on Twitter @PatientWorthy #RareMom!


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