This is a rundown of my first week by myself with the two boys.
Day 1: Great. I woke up organized and ready to go. Feeding was streamlined with husband’s help before he left for work. Baby went right back down for a long morning nap. I fed and played with firstborn all by myself – first time in a LONG time. Showered! Firstborn watched Curious George without me by his side. Also a first in a long time. I cleaned out first child’s room, gave him clean sheets (a big accomplishment). After baby’s second feeding of the morning, we went, raced rather, to the library. But we did it! Baby cried all late afternoon as babies do. Threw random leftovers in the oven for dinner. Made it through two bedtime routines. Washed my hair and went to bed all ready to do it again the next day.
Day 2: Woke up late to a crying baby after a restless night of worrying about my life, my boys’ lives. Firstborn woke up while trying to feed baby – both of them hungry at the same time and I have to use the bathroom. I’m tethered to a feeding pump just waiting it out best I can. Baby never falls asleep in crib, or swing, or playmat, or anything. My saving grace is a friend comes to visit. I get to talk to her and she feeds firstborn lunch. I try to leave early for therapy appointment but, despite my best efforts, run about fifteen minutes behind. Therapy appointment consisted of trying to get crying baby to move his body according to what the therapist wanted him to do and me miserably failing to shut out the noises of all the additional crying kiddos. I leave appointment completely over stimulated. Baby probably feels the same. Quickly pump milk in the backseat of the car with screaming hungry baby next to me. Clumsily hook up the feeding pump and go driving down the road to pick up firstborn. Once pump finished feeding it beeps all the way home and I can’t reach the back seat to turn it off. I beat husband home by about only five minutes. He asks how my day was and I say, “Interesting.”
Day 3: Never left the house. BUT, two people came to visit. One of them a friend bearing breakfast tacos who helped hold Nathan. She’s an expert “baby holder” and knew Nathan well from hospital days. It was good for my soul to talk to her. Then another visitor from Early Childhood Intervention (ECI) came to meet us. I was hoping she’d sell me on the program but I’m not convinced. With this kiddo we may need private therapy. Also, I learned I need to be a well intentioned, albeit lion dressed as a sheep in order to advocate for this baby.
Day 4: Flew by. We were down at Dell Children’s for two back-to-back doctor appointments. Afterward had lunch with one of our favorite nurses and fed baby with the feeding pump in public for the very first time – very appropriate that a nurse was by our side for that inaugural public feed. Came home to a clean house. Biggest blessing ever from a friend who’s done it repeatedly! I didn’t have to pick up a single thing or wipe down a counter top so I put the boys in their rooms and laid down in my own bed to read for thirty minutes. Heavenly.
Day 5: A friend came to pick up firstborn for another playdate. I got gobs and gobs of medical paperwork done while baby slept all morning. Swung through the Chick-Fil-A drive through and delivered lunch to saintly friend who provided morning entertainment for my firstborn. I don’t remember the afternoon. Must have consisted of lots of TV as we waited for husband to come rescue us for the weekend.
Phew! We did it. Some days were good. Others not so good. But that’s life no matter what your circumstances. Sure, there are times when this huge wave of grief washes over me like a tidal wave. God hasn’t let me drown yet and He won’t so I am riding out these waves of anxiety and pain as best I can. There are little glimmers of joy mixed in too and perhaps I don’t cry as much as I used to. I’m starting to embrace my new life a bit more. Every day I feel a little less insecure about my ability to care for my special needs child. This beautifully sums up my first big week.
“No one is ever quite ready; everyone is always caught off guard. Parenthood chooses you. And you open your eyes, look at what you’ve got, say “Oh, my gosh,” and recognize that of all the balls there ever were, this is the one you should not drop. It’s not a question of choice.” – Marisa de los Santos, Love Walked In
My book, Beauty in Broken Dreams: A Hopeful Handbook for the Early Years as a Special Needs Parent, is now available on Amazon!
Also be sure to check out my list of Favorite Books on Disability!