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6 Things I Wish People Knew About Parenting a Medically Complex Child

As the mother of a child with a complex medical condition, I feel there some things everyone should know about parenting a medically complex child.

These are the most important ones to me:

1. We’re not ignoring you. Sometimes we’re just too busy with our child or we are just really overwhelmed.

2. It’s OK to ask us questions about our child or how they’re doing. It is actually nice to know that someone cares enough to ask. It also brings more awareness to our child’s condition.

3. We need support, even long after the initial diagnosis. So many parents of kids with medical needs lose support after the “newness” of the diagnosis wears off.

4. We don’t want sympathy or attention. In fact, having a child with a medical condition usually brings a lot of unwanted attention. After my son’s surgery I just remember the stares and all the “poor baby” comments we got while walking through the hospital hallways because of his equipment and spica cast.

5. We don’t want to hear “I’m sorry” all the time. Don’t be sorry for us. It gets so tiring hearing it after so long and there’s nothing to be sorry for. This is normal life for us and our kids need to hear uplifting, positive comments, not “I’m sorry.” We don’t want anyone feeling sorry for us.

6. We’re parents just like you. Sure, our kids require special care and more visits to the hospital than typical kids, but at the end of the day we are just parents who love our kids and are doing what’s best for them, just like you.