Why Parents of Medically Complex Kids Are Strong

I often hear parents of medically complex kids or kids with medical conditions say they’re not strong. But you are. You’re stronger than you know.

I know you don’t feel strong when you have to help hold your child down for their fifth blood draw of the month, but you are.

I know you don’t feel strong when your child gets admitted for the third time in just a few months, but you are.

I know you don’t feel strong when you get bad news on top of bad news, but you are.

I know you don’t feel strong when yet again another specialist is added to your child’s care team, but you are.

I know you don’t feel strong when you find out that your child has to have surgery again, but you are.

I know how it feels to think you’re not strong because you have a sick child. But I also know you are strong.

You’re strong because you do it. You take your child to these appointments and procedures. You’re in the hospital with your child when they’re admitted.

You get through it, no matter how tough it is. No matter how much you want to break down and cry. No matter what happens, you’re there, because of your unconditional love for your child, because you know it’s best for them.

That’s what makes you strong.

Getty image by roman023

Find this story helpful? Share it with someone you care about.

Related to Rare Disease

group photo rare disease day

Why We Had an Event to Celebrate My Daughter's Okur-Chung Neurodevelopmental Syndrome

This was the first time our family, together with our community, celebrated Rare Disease Day. We celebrated in honor of our daughter, Juliet, who has Okur-Chung neurodevelopmental syndrome (“OCNDS”), an ultra-rare genetic disorder. This celebration documented our huge shift as a family to how we approach our sweet Jules’ rare genetic disorder. I remember when [...]
Doctors and patients sit and talk. At the table near the window in the hospital.

5 Things You Can Do to Have a Better Doctor's Visit

Communication must be a two-way street. Rare disease patients often battle a variety of complex clinical symptoms. A visit to your specialist often results in as much confusion by the end of your appointment as at the beginning. Healthcare providers are usually under pressure to keep patient face time to a minimum, so clear communication [...]
side by side photo of robin roberts and emily gordon

10 Celebrities Who Know What It's Like to Face Rare Disease

Having a rare disease can sometimes make you feel like one in a million. It can be a long time before you even find other people who share your diagnosis, and an even greater challenge to meet someone face to face. So in case you’re feeling like “the only one,” these are 10 celebrities who [...]
Sad young woman holding mobile phone in bedroom at home

When You Can’t Help but Compare Yourself to Healthy Bodies, Remember This

This is a message for those who face illness head on because they have no other choice.  On the days where you can’t help but compare yourself to healthy bodies and wonder why your life is so starkly different. In the depths of the night when you can’t help but curse your less-than-perfect health, and [...]