Parenting and Rare Disease: This Dad is Doing it Right

Parents strive to make a child’s life better—even before the baby bundle comes into this world.

The sacrifices parents make for their children are innumerable, and one dad from Mississippi is no exception as he volunteers as an organ donor to help his young son, who lives with nephropathic cystinosis.

Nephropathic cystinosis is an inherited condition, and living with a genetic or rare disease can influence the daily lives of patients and families. However, nephropathic cystinosis is no match for the unconditional love of parent. Click here to read more all about this daddy and his son.

I worked so hard to become a parent (my husband and I adopted), and now that I’m finally a mom, I can’t imagine being anything else. I love his hugs, his joy of discovery, his laughter. Just everything. And I can’t wait to see the man he grows into. He’s just amazing.

I think I have a pretty good idea of what’s roughly right in terms of the fine line between showing my kid how to do things and letting him figure it out himself. One could argue each extreme, but then quickly run into diminishing returns.

What seems to be good is modeling a few times and then letting him mostly do it, with the occasional reminder to nudge him back on track. This can apply to focusing on homework, getting dressed in the morning, eating in a timely manner, socializing with others in a respectful and constructive manner, and more.

In my best moments, I’m great at this. One morning, my 8-year-old was a little frustrated at having to wear an outfit he didn’t like. We talked about it for a few minutes. There was a hug. He felt better about it, and then he stepped up and put the scratchy polyester church outfit on his special day.

High fives!

But, there’s an alternative reality where I’m busy getting dressed or cooking breakfast or responding to an email where I’m just looking for the quick win.

In those moments, I can’t get down on one knee and calmly and patiently walk him through the rationalization of why it makes sense to wear scratchy polyester pants. So I just remind him directly and authoritatively of his obligation to do what he’s supposed to do, and we move quickly to an escalating game, where momma pulls rank.

That’s way easier and not nearly as constructive. Sure, it gets the job done, but man does it feel like I’m shorting him the opportunity to figure things out and make his own decisions.

As parents, we all have our own challenges to meet. But when your child or you are suffering from rare disease, it presents a whole slough of new obstacles to climb. Tell us about your rare parenting experience here. We want to listen.

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