Today I am a Special Needs Mother, and It’s Hard

For the record, I consider myself just a Mom.  I don’t look at my situation with John and say, “I am a special needs Mom.”  Handicapped? no, my son is not handicapped, that title is reserved for individuals in much worse mental and physical shape than John.  Today, however reality slapped me in the face, yes I am a special needs Mother, like it or not, today it’s showing.

Let me start by saying this is day three or four or more of no sleep, no normal day to day routine.  It all started last Friday night with a full moon, well it did start on Wednesday, but we managed until Friday night.  John does not sleep during the full moon phase.  Yes I do know all about parasite and yeast over growth, we treat it and deal with it. He used to sleep, he used to go to bed at night and get up in the morning like clock work, then he grew up and developed some new seizure issues.

After John became old enough to be a out all night teenager, sleep issues crept in.  I let it go, it’s not like he had to be up at 6:30 am to make it to school.  I just let him sleep until 9 or so and called him sleepy head when he drug himself up and into the kitchen to tug on my arm for help bathing.  He is after all, 20 at that age his brother was in college, spent Friday night out with friends, drove back to the dorm at dawn to shower and go to work, yea I knew about it, I was young myself once too.  In my book John deserves the same, pulling all nighters and sleeping in.

Sadly all nighters for John result in seizures.  Seizures result in confused sleep patters, which lead to more seizures and for the record, John has three types of seizures, lack of sleep or not, he can and will have a seizure. Somewhere last week we stayed up late during a full moon.  The next night Dad came home and we didn’t.  The next night I told John we needed to sleep becuase we were going to Costco and if he didn’t sleep, we couldn’t go.  He slept. Costco is to a shopper like John, Disneyland.  He will do anything for a trip to Costco.  He slept about four hours, enough to go shopping.

I thought a day of driving, shopping and staying up late to unpack the car and put away our treasures would be enough for John to sleep.  By now the moon was no longer a solid circle of brightness illuminating the swimming pool and daring us to take an early spring midnight dip.  John struggled to sleep, going from bed to bed and finally crawling in with me somewhere around four a.m. to watch I Love Lucy while he dozed off.  Success, and I got up on Sunday morning and watched church on television, looked at facebook to see who was sitting the church choir posting messages about the morning services.  John got up and promptly hit the floor with a seizure. This, is the reason I no longer take him to church, fear of a public seizure.  Seizures mean sleep or intense restlessness, John slept I worked.

a full moon shining through the cloudsI think today is now Thursday. This week has been a weird circle of no sleep, seizure then sleep, get up have a seizure, can’t sleep, pee a lot have a seizure and go wild and me trying to figure out how to get us back on track.  We have not had one meal at the table, have not eaten at normal hours when we did eat, and I have tired to stay on top of the days, working during work hours, talking phone calls, answering emails as if nothing was wrong. More than once I have ask my husband or son, “Hey what day is this, what time is it?” when they called to check in.  They know.  They can’t help they are off at work, but they know.  Still, I didn’t know I was a special needs Mom until I broke down and went to the grocery store a few hours ago.

I was going to buy a couple of plates of hot lunch from the deli, a desperate act I fall back on when I am past the point of confusion and exhaustion.  The last time we were asleep was sometime Tuesday I think.  Last night John and I huddled together to watch his movie collection one last time.  No I didn’t have a death wish, I had not made a suicide murder pack as a back up plan for lack of sleep, the VCR stopped rewinding. It will play, but once a movie is watched, you can’t rewind it.  So we were watching anything left that did not need to be rewinded…yes it’s a real word ’cause I typed it.  This morning I drug myself into the kitchen, fed the barking, whining, jumping, begging, animals, fixed a gallon of super strength coffee, turned on the dishwasher becuase it was starting to smell, tossed in a load of clothing, went to take clothing off the line that had been out there for days, and told John we would go pick up lunch. I am guess this was at some point in time between when people eat a noon meal that the evening meal we call supper around these parts.

I must have looked disheveled or something.  The normal friendly group of workers looked at me and did a double take, some half smiled, one even spoke.  At the deli my mind went blank when I ask what I needed.  I just stood there mute as John until the lady said, “Cheryl, John can’t answer, you better find your voice.”  I did.  I took two lunch specials and headed for the checkout.  I stood in line looking at magazine covers when a voice called out, “Over here, this register is open.” I looked around.  Mary was smiling as me, I stumbled into the check out stall and deposited the two plate lunches.  I stood there numb from lack of sleep and did not talk, ask questions, or do my usual chatter.

Cheryl are you and John okay?” She ask just as she told me the total of our purchase.

Yea, why?” I answered as I dug a debt card out of my back pocket.

I dunno, you look so tired and John isn’t dressed or well, groomed the way you usually keep him.” Her tone was sweet yet strained as if she didn’t want to insult me.

It took me a minute for that remark to sink in.  Then I looked a John, and I smelt John. One of us smelled quite human, and I was thinking that aroma was drifting off John.  It was true, I am painfully aware of how the world sees John so I make an effort to have him well dressed, clean and his curly hair fixed to perfection when we go out in public.  Standing there I wondered when he had been bathed last. Heck I wondered when I had bathed last. John’s clothes were dirty and his shorts were pee stained. His face held a scraggly beard giving him that Shaggy character look.  How had I let this happen, how had I left home without looking at both of us and making sure the world outside would only see two stylish and happy people shopping together.  I had not just let my guard down, I had left my guard behind a few sleepless days ago.

It’s been a hard week.”  I managed to say.

You don’t have any help do you?” Mary said kindly as she handed me my lunches.

NO, nope not at all.” I smiled back. “It shows today doesn’t it.” I said.

Yea, kinda, you look like you have not had sleep in a week and John looks worn out as well.” She said softly.

Fact that is. John has been having seizures of all kinds this week and it’s effected his sleep, our scheduled and I guess my sanity.

Mary said nothing more, but smiled and nodded.

As I walked across the parking lot it hit me, I am a special need Mother, and sometimes I need to admit that to myself, my life with my 20 year old, is not what most parents of 20 year old’s live. There I said it, I admit it, some days are just hard. Some weeks are hard. Life is at times, just plain hard.

John and I ate lunch, took bathes, and went back to his room to watch the last of the VCR tapes that did not require a rewind. I dosed a bit for a few minutes before the phone rang and I was snatched back into the world of work with a job request. I sure hope I get rest before Friday so I’ll be coherent to work. Wait, it’s midnight, does that mean it’s already Friday?  AAUUUGGGHH! Come on, give me a break!

Cheryl.

(Photo By: Venkataramesh Kommoju via Flickr)

 

Cheryl Bailey
Cheryl Bailey is a freelance/ghost writer who lives North Mississippi. She is the mom of two grown sons the youngest was disabled after a vaccine injury left him without any physical skills or speech. Cheryl now works to advocate for all persons of disability, and frequently writes about life with John, subject of A View in the Mirror. Her other passions include sewing, gardening, and spending time her dog Cindy and any stray cats that choose to call her back porch home. When not working as an advocate for persons with disabilities, she can be found working for Soldiers Angels in support of our troops. You may contact her via Facebook or Twitter.
Cheryl Bailey
Cheryl Bailey

2 Responses to Today I am a Special Needs Mother, and It’s Hard

  1. Another wonderful article that I can relate to, been there done that kinda moment. My youngest son 16 has a variety of brain disorders with a side of epilepsy, lol and my 9 y/o daughter is autistic. Thanks for sharing
    I appreciate you.
    April Maria

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