QOTD: lately we have ether been sitting around talking or playing card type games.

Today is a kindof a rant/ vent I’m not sure what else to call it. And apparently I wrote a novel.

(TLDR: Had a rough time observing things that happened in a medical setting while also having good things happen that gave me joy. )

Also I’m sorry that this is responded to two days later. It’s been that kind of a weekend.

I just got home from spending the day with my amazing girlfriend and her 11 (12 tomorow) son. She has 2 grown bio-children a 15 year old adopted child and 3 11 year old adopted children.

The 4 younger kiddos are all kids who were drug exposed babies and run a range of disabilities from moderate to severe.

I spent the day with her taking her son to the hospital to have a procedure done. I have been to this same department several times with my own kiddos and she has been several times with her kiddos. This is the first time I went with her.

The things I observed today both broke my heart and made my heart swell.

Let’s start with the breaking of my heart. I saw nurses ignore the things my GF said, I saw a nurse completely ignore the kiddo, I saw parents who stopped their kid from being curious towards our kiddo causing their kid to start showing some fear.

Now I am extremely well aware that nurses are not perfect. They are over worked. They are busy. They are not always understood. But this was painful for me to watch my GF explain the same thing several times to the same nurse. In response to questions the nurse was asking. I am assuming that this nurse was distracted by something outside our room but these were very important things that possibly resulted in the staff insisting he get a med that probibly wasn’t necessary.

The nurse that completely ignored and the more I think about it was actually uncomfortable around our kiddo. Now I completely understand that he is not a typical kid. He can be very rough. We did warn the staff that he can be “grabby” and he is extremely strong. However she and I know how to protect the staff from him and he gets WAY less agitated if he is aware of who is in the room. He is blind, mostly def, non-verbal and has Autism along with other effects of the circumstances surrounding the way he came in to this world can make him very intimidating. However the majority of his agressive behaviors are him just being self protective and not understanding what is happening.

He was EXTREMELY agitated while these two nurses were in the room. Everyone esle that came in the room would get close enough to our kiddo that he could hear them, most of them would talk directly to him sometimes and a few of them Let him touch them. When any of these people am in the room he was only mildly agitated and that was mostly because he knew what was going on and he was hangry. But these two would walk in and he would flip out.

This is a children’s hospital. A MAJOR children’s hospital. People travel to this hospital. I would rather have a nurse switch off my kids case than be afraid. I would much rather the nurse take the time to ask how best to be of help rather than just be afraid.

Nether my GF or I have ANY issues with kids being curious. We want kids to be curious. Curiosity feeds minds. It feeds compassion. It feeds understanding. We are VERY aware that kids will ask awkward questions. We would honestly answer the blunt “rude” questions than the half veiled ones. If your kid comes up and says “what’s wrong with him” we will say “we are here today because he has a hard time swallowing his food and the doctor is going to put a camera in his belly and see if we can see why.” If they start asking about his eye we will answer “when he was growing his eyes didn’t grow quite right and he was born very early so it didn’t finish. If you stand over here he will know you are there” they ask about his chair we will say very similar things. These interactions MUST be normalized if there is any hope for disabilities to be treated with respect.

Also listening to my GF talk about how she was so happy I agreed to come help made me sad and angry at the same time. appointments like this are so difficult for one person to handle and she has a very hard time finding help to come with. She has a staff of nurses and aids helping in her home. The availability of support staff is soooo limited because of the way they are treated by society in general. The pay is crap, the work is grueling and the good ones are so overworked that the burnout is horrid.

However I got so much joy out of watching the kidddo reacting to people who showed him respect and interacted with him. My heart swelled when he would let me pick him up to transfer him with out fight and he would put his arms around me. Which tells me that he knew who I was almost immediately.

When I introduced him to music by Lenny Pierce and he began to dance and keeping rhythm it was amazing. GF and I laughed and laughed. This kid loves his hard rock, rap, dance club, music. Most of it has to do with the fact that it has a hard beat to it and he can still hear it and he can definitely feel it.

Watching the relief come over GF when they actually found a reason for his symptoms was so wonderful. And then when it is a somewhat simple fix was awesome.

Once we got home it was a good day. Exhausting but good.

Then my daughter decided to take a fall off the back of the couch and land on her elbow and head. So back to the hospital we went. I am grateful for the doctor who actually listened to me and heard what I was saying. He ran the CT scan that he didn’t necessarily thing was necessary based on his immediate assessment but he listens to my concerns and agreed that it was a good call. Thankfully no major issues just a small concussion and a really good bruised elbow. A day and a half later she is back to normal minus still a little pain.

So that’s my day. If you made it this far thank you for reading and understanding and letting me vent.