To the Special Needs Parents Who Feel Bad About Canceling Plans (Again)


Before becoming a stay-at-home mom to my three boys, I was a social worker. I worked with families who had children with various special needs, and I would always hear them speak about how they lost friends and family members after the birth of their child. I never understood how you could lose support after the birth of a medically complex child. Now I know.

My husband and I always joke we have become bad friends. But the truth is, we have. When you have a child who is complex, your whole world shifts, and you aren’t the same person you once were.

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The thought of losing your child makes you want to spend 100 percent of your time with them. My husband and I never seem to want a break. If we go out to dinner and a movie, it’s with our three kids in tow. It’s not a curse or a duty; it’s what we truly want. Plus, we both think our kids are amazing human beings, and we really do love spending time with them.

It’s difficult to maintain relationships when you’re always canceling plans. We have friends we want to spend time with — and family members, too — but it doesn’t always get to actually happen. Our son, Hartley, is sick — a lot — and it’s unpredictable. Some days he will wake up looking wonderful and end up in the hospital in a serious state that same afternoon. Some days he just feels blah and really isn’t up to having visitors come over, but that can be difficult to explain.

We hibernate. All winter long it seems like we have little contact with the outside world. Flu season is a scary time for us, and we really do stay inside and keep to ourselves. We have few visitors and usually spend the season trying to keep everyone healthy and avoiding cabin fever.

We talk about our kids a lot. Not everyone wants to hear all about the latest medical procedure Hartley had. But that is what’s happening in our lives, and sometimes it’s the topic that is on our minds the most.

Our life revolves around medical appointments, OR dates, clinic visits, weekly medical supply deliveries and special hospital events. Sometimes we just want to spend the day at home and let the kids play or relax or just decompress from a busy week.

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When people ask how Hartley is doing, we often don’t know what to say. Usually we try not to get into too much detail and just give a simple answer that we think will make the topic go away. We don’t want people to feel sad for us because while it’s totally unfair and horrible to watch your child suffer, this illness has also shaped who Hartley is as a person and who we are as a family.

Being a parent to a medically complex child means we are in our own little world. Sometimes we forget there’s life outside of our home. Thank you to our friends and family for being patient with us and for trying to bring us out of the bubble once in a while.

To the parents of a child with complex medical needs who might feel like they’re bad friend, be honest and up front with your friends and family. Help them understand (as much as possible) about why you might be late or have to cancel plans. Surround yourself with supportive people and be kind to yourself. Sometimes balance isn’t possible. Sometimes you have to cancel for the third time in a row, and that’s OK.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability and/or disease, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Share Your Story page for more about our submission guidelines.


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