Being mom to Jack. . .

A day in the life of being mom:
Jack wakes me up at 6:40am, screaming. I try to ignore him so I can sleep 20 more minutes. Nope. I get up, change his diaper, vent him with the syringe, give him his pacifiers, hope he falls back asleep, and...he's up for the morning. So much for a shower while the kids are sleeping. I carry Jack around while I open his medical drawers and retrieve his feed bag and gastric release bag, get his clothing for the day from his dresser drawers, carry the bags and clothes, along with the IV pole (and Jack), to the living room. We get a blanket from the laundry room to place on the floor. We let the dogs outside. On the way back to the living room, we grab the formula container from the fridge. We drop off the formula, and head back to the kitchen to make up the coffee for Jason and myself. We let the dogs back in. Back to the living room, coffee and Jack in hand. "Bye, Jason! Have a good day at work. See you tonight!" I attempt to lay Jack on the floor, only to listen to him scream as he holds onto my shirt. Eventually, I get him on the floor, but he continues to scream, top notch!
I fill Jack's feed bag with formula, prime the tubes, vent his belly once more, and start his pump. I then try to keep him quite ("good luck to me!"), because Evelyn is still sleeping. I think about taking a shower. Jack starts to scream again. I check his diaper, give him books, pick him up, put him down, pick him up, turn him towards me as he tries to throw his body around to me, put him down. No "Today Show" for me. I resort to "SpongeBob SquarePants". Jack is now content. "I'd better run and clean up, quick! Therapist in 1 hour. Evelyn still sleeping. Hungry. No shower. Here I come bathroom sink!
Clean and dressed. I quickly switch the laundry, think about folding it, don't fold it, empty the dishwasher, fill the dishwasher, think about vacuuming the floors, don't vacuum the floors, grab a banana, and come back to Jack, only to see that Evelyn is now awake, laying next to her brother!
"Crap!, the medicine port on Jack's extension came open, again!" I have to change Jack's clothes and the blanket he is on. There is formula and stomach contents all over. I think about calling the manufacturer of the extension to complain that it's come open at least 6 times since Sunday...I feed Evie. She gets dressed and brushes her teeth all by herself. I make the beds and comb Evie's hair. Jack is fussing the ENTIRE time.
Back on the floor. Text from therapist. Running late. Both kids on my lap. Cut Jack's nails. Still watching "SpongeBob SquarePants" and holding Jack. He's reading his book. Evie is finally playing...by herself!
Wish Evie was big enough to refill my coffee.
Jack just exploded while on my lap. (with sarcastic enthusiasm, "yeah"). At least I had the chance to get more coffee! Holding Jack. He's "drawing" on a piece of paper with a pen. He's talking to the TV "Fanboy and ChumChum". We read a book.
"Mom, will you play with me? Do it like this. Do this. Do that. No, Mom! Like this!"
Therapy has been rescheduled for Wednesday morning. Fold the laundry.
Meet with sister-in-law and her youngest child for lunch. Had to turn off the feeding pump to leave. Cleaned out tube with water. Unhooked entire extension tube from Jack's g-button. Nice break from home. Nice to leave the pump at home. All kids good. Had adult conversation. Had real food for lunch. Visit at home for a bit. Kids played. More adult conversation. Nice and partially relaxing. Jack is a good boy for his Aunty, who just happens to be certified in Occupational Therapy and does a little bit of play therapy with him!
Occupational Therapist comes. Good session. Used the KidKart in the house with the tray. Phew! Jack did very well. Jason home. "Hi Honey!" Watch a Strawberry Shortcake movie 4 times in a row. Jack watches it too.
Talk to pediatrician's nurse on the phone about Jack.
Talk to GI's nurse on the phone about Jack.
Uneventful evening. Good dinner (proud of my meal). Jack 'ate' some Apple Jacks! Clean up from dinner. Give Jack a bath. It's very fast. He screams and pulls on my shirt the entire time. Play with kids on the floor. Put Jack to bed. Start Evie in the bath. Pass her on to Jason so I can run to the store ("Hello, me time!"). Get some Target in. Get some Starbucks in. Come home. Make new container of formula. Mix up Jack's medications. Administer Jack's medications. Fill Jack's feed bag with formula. Start his pump. Try, very carefully, not to wake him during this process. There's a 70/30 chance he'll wake up. He sleeps. "Phew!" Clean up kitchen. Fill dishwasher. Set to run at 1am. Avoid human contact for just a moment more. Finish this blog.
The laundry is still sitting next to the dryer.