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To Those Who Encourage Parents of Sick Kids to 'Find the Positives'

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You know the feeling when you went through your first breakup and felt like everything in your life was falling apart? You might have been sad and hurt and couldn’t imagine ever moving past those emotions, but people kept telling you things would get better.

Remember being pregnant and feeling like you were as big as a house and how uncomfortable you were? Unsolicited people everywhere may have come up and said, “You’re going to miss this special time.”

And when your kids were babies and you were up and down all night long and all you wanted was sleep and people told you, “They’re only little once?”

Even if what they said was their way of trying to be helpful, sometimes it just wasn’t. Sometimes you might have wished everyone would leave you alone and let you live in a hole. But, of course, as soon as everyone did leave you alone, you may have started to wonder where they all went and why no one cares.

Having a sick kid to me is like the first breakup, 40 weeks pregnant and the first month home from the hospital every single day.

I want people to read my mind. I want people to know exactly the right thing to say or I want them not to talk at all. I want people to be funny when it doesn’t feel right and to cry with me at weird times. I want to speak the running commentary in my head and for people to understand what’s going on.

To all of my friends and family who I have stared at blankly, not responded to, or seemed agitated with, this is what I’m dealing with.

People love to remind me to be positive and that things will get better. People love to be a cheerleader and believe in miracles. People love getting in my corner.

What people don’t always know is that some days, I need to be down. Some days, I want to feel the sadness, the disappointment, the hurt, or the loss. Some days, I want to do nothing. Some days, I want to eat chocolate peanut butter straight out of the carton (OK, every day I do that).

Recently, my daughter’s surgery was postponed. I’ve been mentally preparing for this surgery for six months. I was prepared for a major surgery with some pretty big risks. About two weeks ago, we changed the scope of the surgery to be less risky and I was so relieved! I could not explain that relief to anyone because I had not fully explained the fear I felt for this surgery. I had a very true and very real fear that I may lose my daughter or lose some part of who she is in that operating room. For months, it’s been weighing on me and in one short phone conversation, that weight was lifted.

Once the scope changed, my mindset changed. I was so ready to get this surgery done and to move on with recovery and the next phase of treatment. Then, last week, she spiked a fever from a quick bug and it affected her white blood count. For her safety, surgery has been postponed.

I don’t have a rescheduled date yet, I can’t start planning for it, and everything I had planned has changed. So now, my mind is racing with all the “what ifs” and scheduling concerns. I’m not happy with the new options on rescheduling because now I’m wide open, but postponing falls into a busy time on my calendar. I had finally gotten to a place where I was at peace with surgery and now everything is changing and the uneasiness is back.

So, of course, the comforting words have come. Let me throw out a few things.

I rationally can understand that surgery when she isn’t well is a bad idea.

I know her health is more important than my calendar.

I believe God has perfect timing and he will be just as present with us on the new date as he would have been on the original date.

Let me also throw out something else.

It still sucks.

Remember that when you are looking at the big picture and trying to provide comforting words, there is still a person living in that situation right then. They can’t always pull back and look at the big picture because they are scraping by in the day to day. Yes, it’s awesome to find the positives in a yuck situation, but sometimes that person needs to feel the yuck before they are ready to zoom out and move past it.

So, let them cry into their pillow over lost love.

Let the mom-to-be gripe about how she’s outgrowing maternity clothes (seriously, it’s a thing).

Let the new mom recount the last time she slept for X number of hours straight.

And for me, please let me whine about my calendar!

family of parents and two young kids sitting at picnic tables under tent
Alana and her family.

Follow this journey on Hope TIL There’s a Cure.

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

Originally published: April 26, 2016
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