Calm Amongst the Chaos

Mama of 5 seeking calm in the chaos

Last week I sat with our 16 year old daughter, Lily, at one of her many specialists appointments. This time it was her Gastroenterologist, ie GI and we were discussing poop. Literally. That is why we see him. And he is great! He speaks to Lily with dignity and respect and even though he knows she won’t be able to verbally answer his questions, he still addresses her as if he is giving her the opportunity to speak for herself. Although since the topic on the table is poop and more accurately the lack there of, I have a feeling even if she could speak, she’d probably leave this one up to me.

Without going into details of this subject I was telling him we have to find some middle ground, this all or nothing is really hard to deal with. I then told him how I have PTSD from a bad spell where we were leaving places naked and tossing nice clothes and he laughed and said “I remember you telling me that last time”. He then went on to tell me how he remembered we went camping and she had gone all day and we even had to change her outside by the creek and I just looked at him and laughed and said “nice memory!”

I have a strange innate pressure in me to make people laugh where ever we go. It is ridiculous and a genetic condition I’m sure because we never left a restaurant as kids without being totally embarrassed by my dad and his awful dad jokes that left every server we ever had laughing out loud, either genuinely or just hoping for the tips, but laughing nonetheless. So it’s a real thing and he passed it along to me.

So in the midst of us laughing at my poop stories, he said “I am sorry for laughing, but sometimes we have to laugh in this world or we cry” and I said “I totally agree”. A sense of humor is my only saving grace. And sometimes my jokes lay a bit on the dark side but what special needs parent can’t relate. Our worlds are filled with seizures, poop or trying to make poop happen, pee, slobber, boogers, surgeries, hospitals, medication, etc etc. Our plethora of material isn’t gathered in fields of tulips.

But I loved what he said. He the specialist. The person I am sure lives in a way nicer house than me. I can guaran-damn-tee he is in a better car than me. He for sure makes way more money than us and I bet on weekends off he isn’t changing and cleaning poop out of places unmentionable. But he feels the same way as me. He has seen so much sadness in his daily walk in his career that he sees us. He may not live our life but he walks it with us and many other families. I know he oversees kids that have GI issues that cripple their life. And he walks it with them too.

And not just him, but all our pediatric specialists that walk this road with us. They see us. They hear us. They want Lily to live her best life and they are all working careers that are hard and frankly sad. They see the hard stuff each and every day they get dressed and come to work. I am sure there are patients they can’t shake and memories they carry with them their whole lives.

I think we tend to put ourselves in a different realm than our specialists. Some may feel they are just doing their job. Maybe they think they don’t really care. Or that they just do it for the money. Maybe they are untouchable. Or even maybe they are not human.

I just want to say they are. They are human. They have feelings and hopes and dreams for their patients and yes we respect the hard work they put in to get where they are, but we have to remember they laugh too because they don’t want to cry.

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