Dancing in the Rain
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A Trisomy 18 Journey

Life is not about waiting for the storm to pass. It's about learning to dance in the rain. -- Vivian Greene

Thursday, August 11, 2011

A Day in the Life

Life with any new baby requires a new normal. Before Julia we experienced "normal" new normals when we had Sydney and Isaac. With Julia, our new normal is obviously different. And it changes. So, here is an example of a day in our current normal.

1:30 AM Marc and Julia come upstairs to sleep (marc gives me a couple hours head start so I can have a little cushion in case Julia is up for hours at night.)
2:30 AM Julia wakes to eat
3:30 AM Julia back to sleep
6:30 AM M to work
7:00 AM Julia wakes to eat
7:30 AM Sydney and Isaac wake up
8:00 AM Julia back to sleep
8:30 AM breakfast for S&I
10:00 AM Julia wakes up, takes a bath, gets dressed
10:30 AM Julia eats
11:00 AM my shower time
12:00 PM load everyone into the van, grab lunch on the go. Julia upset, park in parking lot to calm her
1:00 PM drop off Isaac at a friend's house for a playdate, Julia still fussy. Hoping she will fall asleep in the car
1:30 PM run errands with Sydney and Julia. Feed Julia in the car.
3:00 PM arrive home. Julia is very tired, finally falls asleep in my arms. Successful transfer to pack and play bed.
3:30 PM Isaac gets home.
4:30 PM I take a nap
5:00 PM Julia wakes up, eats. Yay for her 2 hr nap!
5:30 PM Marc gets home.
6:30 PM Dinner
7:30 PM Julia smiles lots at Syd and Isaac. Julia eats.
7:50 PM Julia pees on daddy :)
8:00 PM S&I get ready for bed/bedtime
8:30 PM Julia falls asleep, but it's a restless sleep, and I'm holding her.
8:50 PM j awake again.
9:00 PM M is tired and heads to bed
9:30 PM J back to sleep
10:30 PM J wakes up and eats.
11:15 PM J to sleep. I will soon follow.

The most significant thing about today is that we all left the house at the same time. Sometimes Julia will fall asleep in the car, but other times, like today, she fusses when she is not being held. Once held she calms immediately.
The other thing I notice looking at today's events is that it's not such an unusual day for anyone with a 1-2 month old. Julia is 8 months old but functionally still at 2 months or so. Exercises like this help me see that we are doing okay. The mental and emotional aspects of living with a child with trisomy 18 (or any special needs child) can't be well-represented in my list and can vary from day to day. Today, though, we did okay. Yes, it wore me out to have all the kids out and about for a few hours, but we will get better at it. Things are already so much better than they were 6 months ago. One day at a time...


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