Wednesday, September 14, 2011

"You don't know what it's like."

This is what I heard yesterday. Let me start at the beginning...

I took The Princess for blood work on Monday after discussing her upcoming bronchoscopy with the hematology nurse. We decided we needed to know where her platelets were before the procedure. I got the call the next morning that she had dropped from 137,000 the week prior to 68,000 this week. 50% drop in less than a week was not good. We made the decision to go ahead with IVIG now so we could guarantee her platelets would be up enough for the procedure on Thursday. We rushed down to the children's hospital, got her IV in on the first try, and got her all hooked up.

While we were sitting in our. Infusion spot for the day, I heard a heart wrenching conversation that seriously broke my heart and made me think. This conversation was between a mother and her son. I don't know their story. I just know we were in the oncology/hematology clinic infusion area. I know the boy had a IV and was getting some sort of infusion. They discussed with what seemed like his doctor about leaving his IV in and starting IV fluids at home because he was not drinking enough. When the doctor left, this poor child had a melt down. One that brouht me to tears.

He was crying saying things like...

"I don't want an IV! Take it out!"

"You don't know what it is like to have surgeries and IV's and stuff!"

And his mom's response, made me a little mad.

She said "Well, you don't know what it is like to watch someone go through all of that either!"


And quite sad.

Why did she react that way? Why couldn't she just let him have his pain for whatever ails him? She could have just said, I know. I don't know what it is like. I am sorry you have to go through so much. It isn't fair and it is ok to be upset about it all.

Or something like that. Because the truth is as a parent I have no idea what it actually feels like to be the one going through the medical challenges myself. And I would never want to discount what the person themselves is feeling. Medical stuff sucks and it is not fair.

And I don't think it is fair to compare the pain and challenges of the parent managing the medical challenges to the kids living with them.

This mother and son taught me to let my kids feel what they feel about their diseases and to not let my feelings overpower theirs. Because what I deal with is nothing in comparison to what they live with every day.

*Disclaimer: I am a mom of a T1 Diabetic child and a child with ITP/Asthma/Dysphagia. I am NOT a doctor. I just play one in real life. Please do not take anything in this post or any other post on this blog as medical advice. If you have questions or concerns of your own, please seek advice from your doctor.*


Misty said...

Oh Tracy, that sounds like a heartbreaking conversation. Hopefully the mom was just overtired, and over-worried, and later realizes her mistake...and then just hugs that little boy!

Michael Hoskins said...

You may a great point, Tracy. I probably would've handled it differently myself, if I were that parent enduring my child's response like that. But I also think about my own situation sometimes, when I get close to or even hit the meltdown point about Life With Type 1. I've said to my wife on occasion: "You don't get it" or some variation. Most of the time, as in 98% of the time, she lets me vent and is supportive. But sometimes she engages me back, and basically says the same thing as that mom did in this case: "That YOU (as in me) don't know what it's like.. to be the spouse of..." I don't. We both vent and talk it out, and go on. Like you, who knows the situation there and how many times they'd had that exchange before. But maybe this was just one of those occasional 2% times for them. Anyhow, thanks for posting this and take a lesson from it. Hope all is well on your end.

Tracy1918 said...

I needed to read this today...

Related Posts with Thumbnails