Club Med

Yesterday was a bad day. It was not pretty and I was one of those Target bags blowing around in a parking lot waiting for someone to pick me up and shove me in the recycle bin.

Today is already much better and my hair is still piled on top of my head in a wet bun so don't cry for me Argentina. It's all good.

But I'm giving you these not so flattering details to let you know it ain't all unicorns and rainbows with moms of chronic ANYTHING kids. 

 

There's a few moms I am privileged to have in my life. They are moms with kids with chronic medical issues. There are four of us. While you may say I do not fit in this category, I will define my role. I have a kid who's disability is so severe that he could allow harm to come to himself or me, one day, and not realize the consequences. There is a definite fatality rate involved with my autism.

Carson also has issues I know these other mother's struggle with--side effects of meds. The very meds that are supposed to help your child, can cause side effects that come with their own bag of tricks and hazards. That would be the reason we do the EKG's. He takes harsh meds,that have over time caused  issues and will continue to stress his heart. He has banged his head so much, his doctor has worried about frontal brain issues. Worry is worry and stress is stress---we all share that in common about our children. My newest hurdle of being in the hospital has probably cemented my spot in Club Med. 

Now there are four of us here at Club Med. We have another child who is non-verbal with varying serious health issues, and two that have had many major organ surgeries and are the bravest of the brave. 

While we do not talk on a daily basis, we are not each others BFF's, we share a lot of the same feelings. We can rant and rave at each other, encourage each other or just simply like each other's Facebook posts and we know. 

 

We know that we know, we know. 

Club Med isn't about who has it worse at the moment, who is actually getting time with their other kids or really about THE kid---it's about feelings. Not many people can give the validation of , "I know how you feel", and really know. But we know. No one may ever know what it feels like to walk in your shoes, but these women have tried mine on and walked around the block. That is something I thank God for. Ours is a very different club or friendship. We don't keep in constant touch. It's just the knowing that makes you sometimes feel better. It's those prayers you say for one another that you know they say right back for you and your child.  I pray on those bad days we have, that I have enough bail money if the call comes one of us has snapped. I love these women in Club Med. I pray good things for them and long lived health for our children. We can laugh till we cry, we can cry till we laugh. And we can probably tell more poop stories than a 12 yr old boy.

 

 

I've been in a funk since my Dallas trip. Usually I'm a pretty private person with my feelings but I think there might be some small pearls of wisdom in sharing them this time. If nothing else than to explain my dazed look and zombie like state as you see me wondering around town with my ten second delay to answer your questions.

Let me try to explain. **I will preface this analogy with the fact that I do not ride any rides at amusement parks. I am not a roller coaster person, I do not like heights and I do not glean joy from going in circles.**

 Imagine getting off a merry-go-round after 100+days of being on that spinning wheel (of death) and then trying to jump back on. Your equilibrium is off, you stagger around, you want to vomit and you feel like your sense of timing is WAY off. 

 

That's how I've felt since returning from Texas. I can't make myself have the same energy to go back to the hospital and work tirelessly making phone calls etc for Carson.  Take it easy, relax you say--

That would be nice, why don't I do that?

I can't seem to knit one complete row, read more than one page in a book or concentrate on anything more than 4 minutes long. I have no idea what I'm saying when I speak, I zone out after 4 minutes of someone else talking and I want to do anything fun and distracting to get my mind away from the guilt I feel for not being with one of my kids every minute or doing something for them. 

I want to wander aimlessly in a store (which I haven't really done in all these months) but that's tremendous sensory overload--I would go postal and end up wearing a tu-tu home I didn't pay for. I feel like I was captured by some alien and probed in the melon and sent back to earth to wander around and spout gibberish. (Maybe I'll run for President.)

Club Med moms know this feeling well. I don't even have to ask--they'd just laugh.
But for me it was new. Bonus prize to the hospital stint I imagine.
Just as I was thinking --thank you Jesus this day is over--God sent me a cement block.
I'd really been shaken to the core the past few days when someone close to me told me they didn't think God was down here working in Carson's life or anyone else. Just an opinion. I don't want to argue it or think about it one more minute.
But God's cement block landed in my lap last night with a thud in the form of a text from a friend I don't hardly ever hear from.
I feel it's only fair to share her words since you have all put in the prayer time for Carson & myself:

 

"I teach at a college in NE Oklahoma. We had a dept meeting last week with the president of the college. It was mostly about the decrease in funding for OK schools, but during the meeting he was mentioning how he was upset with the state of the current OK gov. He specifically mentioned the poor treatment of mental health care patients and the abuse of children in the system. I thought you might want to know that all your hard work fighting the system is working to get the word out, even in other areas of the state.

 

I didn't say anything in the meeting, but I smiled! My Wed night ladies prayer class has been praying, particularly for the Dallas trip. I shared your blog post with the class. I loved seeing how God had been leading you up to that moment for a long time!

He definitely works! Just imagine that if one thing went different in any of your lives (lawyer, lady in Dallas, you), then you would not have had that connection or that meeting for that matter! God plans things WAY in advance and orchestrates each and every one into this beautiful chorus of interacting lives!"