What the Hardest Parts of Parenting a Rare Child Has Taught Me

When you have a child, there are always things that are harder than others when it comes to parenting. But when you have a child with a rare condition, “normal” everyday things can become harder.

Emergency room trips are one of the hardest parts of a rare disease parent. Usually, no one has ever heard of your child’s condition, and they look at you like you don’t know what you’re saying when you mention it.

I’ve had to fight before to get my son tested for a UTI (urinary tract infection) because “UTIs in toddler boys are rare.” But they’re not rare when your child has bladder exstrophy (BE). It’s actually a common problem in people with BE, but it’s hard to get that point across when no one has ever heard of it.

No one understanding is one of the hardest parts of being a rare disease parent. There are so many aspects of my son’s condition that most friends and family do not understand. When he has trouble walking or when he still wasn’t rolling over at 8 months old, no one understands that it’s because of his condition. Most assume it is laziness on my part.

Not knowing when the next hospital admission or surgery will be is also one of the hardest parts about being parenting a rare disease child. It’s difficult to plan things. Inevitably, you’ll schedule a birthday party or family get-together and end up postponing it due to a hospitalization or your child being unwell.

There have been big gaps between our hospital admissions and ER trips and there have been times where it’s almost happened back to back.

Having doctor after doctor tell me I was just being a “paranoid new mom” was one of the hardest parts in the beginning. It was so disheartening. They didn’t know his condition even existed, so to them it wasn’t anything to look into. It got frustrating. Parents’ voices and opinions should always be heard. After all, we know our children and their rare conditions better than anyone else ever will.

Not having enough support was also extremely hard. There aren’t many support groups or helpful stories out there, because there aren’t many people with your child’s condition in the first place. It truly helps in those first few weeks after the diagnosis to talk to people who have kids with the same condition, and to hear their real stories and not something from a medical article.

My rare disease parenting journey has been the hardest thing I’ve ever taken on in life, but also so very rewarding. Being a rare disease parent has taught me there’s so much in life that is taken for granted.

My son teaches me new things every day. He’s shown me how resilient young children like him are. He’s shown me how they can go through the scariest things in the world and still have such positive, upbeat personalities.

When you have a rare child, you have to face hard battles, but you also see the true meaning of strength.

The author's son in a hospital bed

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