One Day At A Time: The Life of A Special Needs Mother

June 24, 2019

Sometimes, I just don’t understand.

I don’t understand why God picked me to be the mother of two special needs children.

I love my children more then anything in this world, but sometimes the isolation of it all is so overwhelming.

There are days where it is so loud inside my house that I cannot hear myself think. 
The constant squealing, yelling, jumping up and down.

Sometimes, I sit down at the end of the night and ask why? 
Did I do something wrong? 
Did I break some cardinal rule?

I do not understand, I think I let anger get the best of me in every single way, I know you shouldn’t compare but, I can’t help it.

I fought like Mohammed Ali to stay pregnant with both of my children.
I did everything the doctors told me.

Some days, I have an extremely clear path of what I am supposed to do with my life, and some days I could not even tell you what day of the week it is.

I live in a constant state of fight or flight, the first sight of a retraction and i’m checking my bank acct like, do we have enough money to spend 3 weeks in the PICU right now?

I love my kids.
& I love God.

I feel forgotten & invisible.

I feel as though people don’t see. They do not see the stress of it all, and they blow it off like it’s not that bad, or i’m just being over dramatic.

There is not a single second of the day when there is not at least 1 child attached to me.
I have tried to hide, many times, it does not work.

One time, I did succeed and my son was screaming at the top of his lungs, “My mommy is gone, I can’t find my mommy” 
I felt so bad, I let him eat cake and ice cream for dinner.

Now, I just circle from one room to the other, because it takes them a few minutes to realize that i’m no longer in the same room with them.

When I poop, my kid stands there and says, “You go pee pee, or poo poo? Mommy, you poo poo?” and if I lock the door he will undoubtedly bang on the door the entire time while screaming, “Mommy let me in, please mommy, please.”

I tried over and over to some how “fit in” with the normal mom’s but I guess they didn’t like my gtube jokes, or the fact that sometimes my child gets fixated on something when we are out, and I wind up buying it, because it’s easier.

“That’s why he is so bad, because you buy him everything if he screams, let him scream for 5 minutes and he will forget about it.”

Actually, he won’t. He once wanted a gas station, and he talked about it for 3 weeks, until I finally found one because it was all he talked about, for
 3. fucking. weeks.

I don’t know if that is just not a normal kid thing, but my son with autism does not forget a single thing.

If you tell him that at 2pm he is going to ride a pony, you better find a pony for him to ride, because he is not going to stop until he rides a pony!

I once tried to have a “play date” and my kid came riding out of his room on his mickey mouse air plane with a string of oxygen tubing screaming, “I shoot the fireeeeeeee, this is my fireeeee hoseeeeeeeee”

After that, the normal mom’s never wanted to have another play date.
We have 10438534 feet of tubing, and it does kind of look like a fire hose, and it makes him happy so why not? 
It seemed to make the other mom’s “nervous.” 
The reality. is that oxygen tubing, suction catheters, feeding bags, aren’t sad to us, and they don’t make us nervous. 
They are all a normal part of our lives, and sometimes my kids find the medical things and they play with them.

I feel like I don’t fit in. — not that I don’t fit in with normal moms, but even some special needs moms.

I don’t know if you have ever seen a group of special needs mom, but girl, they will have a compare/ competition worse then an episode of Jerry Springer, especially if it’s in a Facebook group.

When I see someone post a picture of their child’s brand new gtube stoma I just want to comment a bag of popcorn, because one person is going to say,

“My kid has had a gtube for 348 years, and you need to leave that thing alone”
& another person is going to say.
“No No No, don’t listen to her, you need to clean it everyday with only basic soap and put a gtube pad on it, I totally have the cutest ones, here’s my esty link”
& another person. 
“Why does everyone have to always put etsy links? If she wanted to buy your stuff she would ask! Girl, all you need is some Calmoseptine, it’s not that bad”
& then comes the admin. 
“Yall are all wrong, everyone of you, all children are different and you need to call your child’s doctor, they can probably use some silver nitrate, but you need to consult with your child’s doctor. We do not give medical advice on this page, I am now closing the comments!”

Me, I don’t even comment anymore. 
I just follow the post and sit up at 2am when I can’t sleep and laugh.

I’m honestly not sure where I fit in, or if I ever really will, but what I do know is that at the end of the day, when crap is really hard, I walk into my children’s room & I just watch them sleep.

Right now, that’s enough for me to get thru the day, night, week, month, or what ever day of the week it is.

Tomorrow, my kids will likely only wear a pull up and I will probably say, “I’m about to loose my shit” at least 30 times, but they still love me,and that’s all that really matters.

I’ll keep praying for sanity, hiding in the bathroom, and trying not to loose my shit and hopefully i’ll raise two humans the right way.

I’ll surely keep trying until God decides i’m not supposed to do that anymore!

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