In the darkness of the night when no one is awake I listen to the silence of the world. Wondering when my mind will too become silent; I almost always wonder if today I will see one of my children stop breathing.
When the room becomes to quiet I will turn on a fan, not because I need the air but because I have become quite used to the hymn of the oxygen concentrator, the blaring siren of the pulse ox, or the constant beeping of the feeding pump.
At least one of those will have gone off at some point in my chaotic night. So, when they don’t my mind will always wander into the unknown and that is a quaint fearful place no one really needs to be.
In my world of unknowns we count respiration's and wonder if we have enough time to race to the hospital or if we need to call 911.
In my world of unknowns we look at a tummy and wonder if a little bit of bloating is really an obstruction that could potentially kill our toddler for the second time in a row.
I’ve trained my brain to constantly be on the look out for anything that could potentially kill my child.
I have done a very good job of keeping track of pee, poop, and what they eat and drink down to the last spoonful of mac and cheese on their favorite red spoon because everything they do has the ability to do something that could and would harm them if I am not there to make sure it does not.
When I tell this to other mother’s they in fact look at me like I have actually lost my mind, not the,”okay your a little insane” look, but the “have a good day don’t ever call me again look.”
I have gotten pretty used to that expression because not only does it come from other mother’s, but also my family and friends as well.
It comes in the form of, “You really worry to much” or “Exaggerating much” and my absolute favorite, “Oh, you’re just being over dramatic”
I am okay with being over dramatic and I do worry to much, but I cannot stop. I will never be able to stop worrying that something bad will happen because bad things have happened.
I was never mean’t to see a doctor do compression's on my two month old nor was I mean’t to listen to a surgeon tell me my two year old was septic and critical after a bowel obstruction left him on a ventilator fighting for his life.
I was never mean’t to learn how to troubleshoot a feeding pump at 2am because my child’s belly simply could not handle a rate higher then 25mls an hour, but he was way to tiny to not be fed all night long.
Gastroperesis stole his ability to get nice big meals to make his tummy feel full.
I was never mean’t for the life of nurse over mommy, but here I am living it. I don’t have a college degree in pediatric nursing I simply have a crash course in I really don’t want my kid to die so I do the best with what I have, and I am okay with it.
I could only thank PTSD for giving me the worry, but the worry of the PTSD saved my child on many nights when we had 4am hospital trips where high flow oxygen would be the only thing that stood between him and a ventilator.
I could definitely thank anxiety for a few catches as well, because the constant state of anxiousness will keep you up all night pouring your 20th cup of coffee because you’d rather stare at a pulse ox with the smell of warm coffee then be alone in your thoughts in a dark room breaking out in a sweat reliving the day your child told you they couldn’t breathe over and over.
Maybe society will always wonder why I never talk about the good stuff, or why I never seem happy, and i’m okay with that because society does not define my happiness I do.
It seems that everyone is okay with special needs motherhood as long as everyone covers it up like the Christmas presents in the back of the closet that only come out once a year, everyone opens them they get excited talk for a while and then everyone goes home and it’s all forgotten about.
We don’t talk about the constant worry, the constant stress or, the constant sadness of emotions you will feel all stemming from the overwhelming fear that if you stop looking for even two seconds you will the be the mother bent down on the floor performing CPR on your very own tiny human.
You get used to this feeling and you learn to embrace the guard you have put up over your heart for everyone except the child you have vowed to keep alive no matter what.
You sit in these emotions, you bury the PTSD, and you embrace the anxiety because it is your armor and it helps you get through the day like the only friend you know you can and will count on being there at the end of the day when the only thing you have to keep you awake is the sound of the pulse ox telling you the sensor is bad.
I hope that one day society will understand the silent battle that comes with emotional fatigue in special needs motherhood, but more then that I hope that they will learn to support these mothers more then they are now.
When the feelings of these emotions become to much know that you are not alone and that there are other mother’s going through the same thing.
You are never alone, ever!
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