Do you ever have one of those days? The ones where you wish your child didn’t have a disability?

Today was one of those days. If I could’ve taken away Down syndrome, I would have. It wasn’t a terrible day; it was just a typical day with a few challenges that I wish didn’t exist. I took the young teen down to Children’s Hospital to get his blood drawn. He’s having some pesky problems getting his thyroid regulated and this is the second lab visit this summer. Actually, it’s his third. He threw such a fit over the first one, we walked out. The second visit took us about 90 minutes of negotiation to get a successful draw. Today’s visit was an improvement! It only took us 35 minutes and he was fully independent, meaning that no one had to hold him in any way. I took pictures to prove it!

Many times, I would post that picture on social media and brag about how independent he was. Today, I didn’t. I was too drained and frustrated that we have to have the Child Life specialist and a full 30 minutes of negotiation to accomplish what should’ve taken about 10 minutes. I was tired because I’d had to clean-up the bathroom floor twice today because Mr. Independent gets careless in the bathroom and makes irritating puddles. So, I was having trouble, ‘flipping the script’ to advertise his success and honestly hilarious negotiating skills. Fortunately, another mom posted on her page that she was also having a tough day. She started her post saying that we don’t often talk about the bad moments enough.

She’s right. We do not talk about the bad moments enough. I think so many moms of kiddos with Down syndrome and other needs often try to present the positives to our lifestyle at the sacrifice of our real challenges. I think we do this because most of the time, we don’t recognize these rough spots as extraordinary. They are built into our lives so much that we simply see them as everyday life. We also want to validate our child’s life by presenting the ‘more alike than different’ moments. Lastly, we really want to forget the bad stuff sometimes and scream the good stuff from the rooftops. I could easily post today’s adventures from a different filter. Look! Today he sat still for his blood draw with no handling and we cut our negotiation time in half! However, that’s not fair to others dealing with their crappy days. It’s extremely helpful to know that others are tired of cleaning the bathroom floor and dread simple doctor office visits.

Knowing about the bad days does not minimize the positive impact my child has on our family or the world. As my social media friend shared her bad day, she also got to share how her contemplative mood was lightened by a complete stranger sharing the positive impact his brother had on his own life. How awesome was it that she shared her story at just the right time to lift me up from my bummer mood as well? My challenges today weren’t really the worst but I’m sure that many can relate to them. I hope my message can lift someone else up and help them along on this parenting journey we all share. Oh, and my other tip of the day is that Child Life specialists are truly a gift to us all.

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