In the darkness of the night when my children are asleep I hear the silent noise of my sons PICU room.
I can tell you the difference in the ding of low oxygen, or the chime of the ventilator.
I know the meanings of the drugs meant to keep him sedated, and I know the drug “rock” meant to keep him paralyzed so the tube that took every one of his breathes would not move ever so slightly.
The darkness turns into morning, and I see my children peacefully playing.
My mind can tell me they are okay, but my…
I have sat inside my anger for to long now.
I have listened to the entire world tell me that “covid does not effect children” all while living my worst nightmare inside the suffering of my child caused by Covid itself.
I watched as my child went completely unrsesponsive from a virus that half the nation does not even think is any worse then your average “cold.”
I am the parent that almost lost their child to Covid, and I cannot stay silent about it any longer.
Some how Covid in children has become nothing more than a political debate…
I am the parent to a five year old little boy entering the public school system in America.
He loves firetrucks, ambulances and his laugh fills my soul with happiness.
He is my whole entire world, but every time I read another headline starting with, “ Unvaccinated child, now on life support from new delta variant” I wonder if that could be him.
Could I listen to him laugh for the last time?
Could I lay next to him watching him sleep peacefully one last time all from sending him to school with no protection from this deadly variant of…
I am a special needs mother. I have learned the intricacies of all of my child’s medical conditions, and I can tell you what will and won’t work for him faster then I can take a breathe, but what I can’t do is get his health insurance to consistently cover the life saving treatments he needs to survive and thrive to continue to grow.
I have sat on hold for hours with zeros answers, I have begged and pleaded with not only God, but also the person on the other end of the phone with not an ounce of sympathy…
I wish I could be the mom strolling through target with her well behaved kids with a coffee on her side with no care in the world; instead I barely function every day.
I struggle to get out of bed, and when I finally wake up enough to open my eyes I’m often met with the beeping of my sons feeding pump and the defining loudness of my child’s meltdown from the all to well known fixation in the form of autism.
I don’t get to stroll through the aisles of any fun little department store without having at least…
I wish I could say that laryngomalacia was just a little bit of noisy breathing with no harm to me or my child; If it was my child would be okay and I would not feel like I am living in world of constant fear and sadness.
If it was just noisy breathing he would not need a feeding tube, and I would not constantly have to look for the signs of respiratory distress in my innocent little baby.
I wouldn’t know that breathing faster then 50 times a minute was bad, and I wouldn’t know what the constant sound…
It’s been five days since I have seen my home and slept in my own bed….
The fold out couch inside my sons hospital room has become my new home, and the standing shower has become the only time I can cry inside of my own lonely thoughts.
I have tried over and over to be strong while putting on a brave face in front of the doctors that come in and out of my child’s room all day and night, but sometimes I find myself wishing that I could run away into my own bed and forget everything that…
I wish I could say that I am just depressed, that depression was the cause of my sadness and that I could take a simple pill, talk to a therapist once a week and I would feel better, but that's never going to happen.
If depression was my problem there would be an easy fix and the world would accept my sadness and all rally around me in a world of support for the awareness of “mental health” except its not.
My sadness is never ending. I can let go of it sometimes, and I can hide it well like…
I stood at the sink washing dishes as my five year old said, “ make me a jelly bread.” he didn’t say please, and he didn’t ask. After all it was the fourth time he said he wanted a jelly bread and I kept telling him to wait so I could finish cleaning the kitchen.
As soon as he said it, my sister said, “Maybe you could ask her instead of tell her” I heard her say it, but didn’t make a big deal about it and quickly said, “it’s okay, I don’t care how he says it, he has…
From the first day of my journey into motherhood I was told over and over of my children’s inability to “gain weight adequately.” With each pregnancy it became more and more of a big deal seeming to effect each child more then the other.
As I think back now, I am not sure that it actually effected each of my children to a degree that was worsening with each one, but rather their doctor’s seemed to dwell on it closer and closer as if with every child the goal of the “perfect growth chart” got harder and harder to obtain.