Getting Real

When we read people's stories online, they are heavily edited, carefully chosen pictures that they want to share. We rarely see the day they eat cookie dough on the sofa while not getting out of their pajamas. We see adorable little children lined up in a row, doing their school work with no whining, while their tousled hair (that took 30 minutes to get that bed head thrown up in a quick bun look) looks adorable as they mix up homemade cookies.

Yeah, so not me! Let me describe my day.

I wake up at 3:00am to kind of nudge my husband to make sure he's awake to get ready for work. I wake up at 3:09am and repeat. I wake up at 3:15am and repeat. I am often then awake while he's still groggy in bed thinking about getting up. It's a good thing he's so cute and I love him so much.

• I get up after laying there staring at the ceiling and traipse into the living room. I grab my pillow as I leave my bedroom and lay on the sofa. I put a DVD in that I don't care if the kids see in case I fall asleep and they walk in on the end of it. This means something like Leave it to Beaver or The Andy Griffith Show or the like. 

• I watch it a while and go back to sleep on the sofa after convincing our cat that he doesn't want to play with me. 

• 5am or so comes and I am awake for good. No, I am not just an awesome, well scheduled, and put-together Mom. Nope, for some ridiculous reason I am a morning person. No matter what I am up early. I don't want to be. I am not singing with the morning birds happy. I am simply awake. 
• 7am or so and my youngest is up. He comes into the living room, sits next to me, leans on me, sighs, and then says, "canIwatchamovieIamhungrycanyoufeedme". It happens every morning without fail. 
• I slowly get up, grab him some cereal or toast with "chocolate milk" (formula mixed with almond milk because he doesn't eat well) and sit back down with him letting him eat on our card table or desk which is in the living room while he watches his kids DVD. I give him his morning supplements his doctor wants him to have, and hand him pear juice to drink with it.
• I hang out and wait for our older son to wake up. Since he was up until midnight due to his sleep issues tied to his Autism, he won't get up until about 9 - 9:30am.
• He wakes up, I kiss his sweet sleepy head (because he has the biggest bed head I have ever seen with hair going everywhere and a sleepy smile every single morning), and snuggle with him a bit. 
• He doesn't ask to eat. He never asks to eat. If I didn't make him eat I think he wouldn't eat all day. So, I tell him it's time to eat and give him his breakfast choices. He likes cereal, toast, or eggs most mornings. 
• I let him sit at the card table as well because brother did and, well, you know how that is. 
• We finally finish with his breakfast between 9:30 - 10am.
• I mix his supplements (those that can be mixed) and get them in syringes. I put them into his g port of his GJ tube and change his tubie pad. 
• In this time I have grabbed something with caffeine and added in my Before the Flow or After the Flow (depending on the time of month), my zinc, and take my allergy pill after forcing myself to eat a little something. I am not a breakfast person and could skip it everyday. But, since it's important, I take my allergy meds in the morning knowing it will force me to eat or else I will be nauseated. 
• I get dressed, the boys get dressed if we get dressed that day. I almost always do. I feel more productive with clothes on vs. pajamas, don't know why. We then do our typical personal care such as brushing our teeth and hair. I don't put on make up. True confession, I very, very rarely wear make up. I don't like the feeling of it and yes, I have tried it all. It's a sensory thing and my husband loves me bare faced, so it's a win-win. I also rarely do much with my hair. I brush it, put it in a pony tail about 40% of the time, and that's it. I am a very low maintenance person. 
• The boys play, run around, and have fun in between all of these activities.
• Yeah, well, it's now 11:00am and it's time to contemplate lunch. 
• I normally make a quick lunch. It might be left overs from supper the night before, a sandwich, hot dog, pasta, etc. 
• I make their lunch supplements and hand my younger son his (he swallows his) and mix them up for my older son to put in his g-tube.
• Depending on how well our older son has eaten for the day, I start his continuous feed now and it will last him the rest of the day and into the night. If he's done awesome (which is rare) I wait until supper to start it.
• The boys clean up their places and it's time for quiet time. 
• I tell the boys this is a good thing for their bodies to rest for an hour. They don't have to sleep, just participate in a quiet activity. Mommy really just wants to have a bit of down time. 
• After quiet time we have a snack and start school. I used to do school in the morning but the kids have told me they hate doing it that early and prefer the afternoon. I am fine with that since I do better in the afternoon, too. I have noticed a big difference in their attitudes towards school work and their attention when we work in the afternoon. 
• School ends and we do some chores. The kids pick up anything in the livingroom that is theirs, clean up their rooms (if I remember to ask them - just keeping it real), feed their pets, and then do other chores depending on what needs to be done. 
• It's soon time to think about supper. I make supper, we eat without my husband 4 out of the 7 nights in a week due to his work schedule. I, again, hand supplements to our younger son and mix them for our older son to go in his g-tube. 
• If our son did great earlier with his oral intake, I start his continuous feed now. 
• Both kids run off to play for a while. 
• Every other night the boys get showers/baths (depending on which one they want). 
• We have prayer time, often talk about the day, and sometimes read a book or just snuggle for a while. 
• I kiss the boys, give them big hugs, tell them how much they are loved, and send them to bed. 
• 10 minutes later one of them is out wanting something (water, another hug, to tell me a life altering issue that just came to them once the lights went out, etc). I listen/hug/get them water and send them back to bed. 
• Younger son stays in his bed until he's asleep. He often reads a book until he goes to sleep. 
• Older son stims. He stims for the next 3 - 4 hours until he falls asleep around midnight. 
• I sit on the sofa, chat with hubby, maybe pop in a DVD, go over what needs to be done the next day, and settle in for a long night as I can't go to bed until our older son is asleep because he roams. He never leaves the home, he just roams in our home. I need to be up to help him with whatever he needs. There is always a need in his mind. It's never aimless. 
• I head to bed once the quiet happens in his room. 

Days are busy. I am OK with that. Sure, I would love quiet days where we did nothing but read books, take long walks in the woods, and play board games. It just really doesn't happen. It's our normal. 

No, I am not a saint. There are days that I stand at the counter in the kitchen wondering if it would be horrible if I just skipped one day's worth of supplements for them so I didn't have to bother with it. I don't, but it is tiring. There are days I dream of hubby bringing home a large pizza with extra pepperoni and double cheese. I make a gluten free spaghetti instead, but I dream. There are days I pretend I am sleeping when hubby is home hoping the boys will go to his side of the bed. They don't, but I try. There are days when it is lunch time and it hits me that I am still in my jammies. I change clothes, but it sure did feel good. We all have weaknesses. I don't do these things with some halo on. I don't want to wash dishes most days (and some days I don't). I don't want to do laundry, or make another pitcher of formula, or anything else medical. 

This is not who I ever planned to be. I am a techie. Computers and technology have known issues with known causes and you fix them in known or not so known ways. You have a beginning and an end to an issue with any system. You can walk away from the office at the end of the day and know you did a good job and it won't be there tomorrow. I was a manager and loved working with people helping them succeed at their jobs. I was well liked by my employees and my CFO and COO gave me lots of praise and kudos. I got raises and more responsibilities, even responsibilities far above my pay grade. 

But you know, the perks of this job are so much better. When my younger son smiles and tells me we have the best talks, I don't miss that job. When my older son smiles at me at all, I don't miss those raises. When my sons tell me I am the best teacher in the world, those responsibilities I held so dear mean nothing. It's hard. It's tiring. It's mentally exhausting. But it's the best job I have ever had. And THAT is getting real.