Wednesday, December 18, 2013


 [For my own sake, I want to start jotting down what some of our days look like... Feel free to skip!]

Watts wakes up at 6am, his normal wake-up time, after a somewhat decent night's sleep. I stumble to his room and am greeted with a grin. I nurse him and go downstairs to get coffee and turn on morning cartoons [fact: tv time before 7am doesn't count as daily screen time]. Piper and Michael wake up and come downstairs soon after. We watch a show and then move into the kitchen while Michael makes french toast. Watts toddles around in his too-big footed pajamas and starts his daily "chore" of unloading the kitchen cabinets. Piper starts on an art project at the kitchen table, requesting every two minutes that I join her. I get her started on a coloring page and run upstairs to throw some clothes on and brush my teeth. Breakfast is ready and we all sit down together. Watts throws his food on the floor and signs "all-done" without trying a bite. Piper, like clockwork, announces that she needs to go potty as soon as we start to eat. The rest of the meal is spent tag-teaming with Watts and wolfing down food.

Michael gets ready for work. I start art project #2 for the day with Piper...some complicated embossing glitter and stamps that is 1) extremely messy, 2) requires a hot iron to set the powder, and 3) I hid in the back of the art cabinet in hopes of Piper not finding it...obviously didn't hide it well enough. Piper is thankfully 100% engaged and completes a few pictures before losing interest. Watts toddles around on the floor and pulls things out of cabinets.

Michael leaves by 8am. Art time is done, Watts is fussing for more attention and needs a diaper change. I move the kids upstairs to get clothes on and Piper requests "dance class" and spends 30 minutes or so dancing to Pandora kids' stations.

Watts nurses again but is distracted. Both kids spend time jumping on Piper's bed while I hover over them. Someone kicks someone and a time-out is in order. Another someone throws a tantrum and the morning starts unraveling. It is now only 9am. Dishes are still on counters, art projects spread out in kitchen, and piles of laundry on the couch. I think about the energy necessary to entertain the kids if at home for the next three hours and decide to leave the mess and get out of the house instead.

I mentally go through my options of where I can take them for an outing that's not busy, cold, or expensive and finally decide to venture to the mall to exchange a Christmas present for a family member.

The next thirty minutes are spent wrangling kids into coats, packing diapers, and breaking up siblings squabbles. My patience thins and I snap at distracted Piper to "walk to the door right now or you will get left behind!" An empty threat that weighs on my conscience the moment it leaves my lips. We load up and I spend the first few moments of the car ride apologizing to my three year old for silly hurtful words spoken out of anger and impatience and tell her that I would never ever leave her behind. She smiles graciously and tells me that "that's okay, Mommy", and then proceeds to tell me some joke about pickles not being allowed in the car (or on a plane?) and busts out laughing so loudly that Watts joins in.

Sigh. Grace washes over me. His mercies are new every morning and, sometimes, every moment...

The mall is empty, just as I hoped and we walk the floors and point at the Christmas decorations and the speedy mall walkers. Watts sits contentedly in his stroller and eats his beloved peanut butter crackers, Piper races ahead and squeals every time she see something sparkly or Rapunzel-related. I exchange the present just as Watts melts down in the stroller. We get a lot of concerned stares --with his bald head and ng tube and screams-- and I'm surprised at how little his (and her) fits phase me anymore. I am either a seasoned mom, a laid-back mom, or just really tired.

I finish the exchange and let Watts loose in the main mall, his shaky walk slows us down but we don't have any reason to be in a hurry. We pass by Santa and he's given a wide-berth by Piper. We sit and watch two men fly electronic helicopters to Watts' delight and to the amusement of a group of old women who stop and take pictures of Watts. I'm confused by it but not enough to go confront them about it.

We move upstairs via the all-exciting glass elevator and get a snack of fries and lemonade at Chick-fil-A. We dip our fries and laugh at toddling Watts as he refuses the fries and instead plays peek-a-boo behind Piper's chair.

And then, as if from a movie, an orange helium balloon comes floating at the kids' level across the empty food court and the kiddos chase it with delight and awe. [It later meets its demise in the teeth of Piper.]

We linger in the mall until it starts to fill-up with more shoppers then we load back up in the van and drive home. Watt falls asleep on the way which thrills Piper because she knows that it buys her more screen time at home while I attempt to transfer Watts to his bed.

He nurses and transfers. Piper eats lunch and I blitz the kitchen but don't have time to tackle the dishes in the sink. Piper heads up for a nap and I lay with her until she falls asleep. Sweet, sweet girl.

I eat lunch and start some laundry. Watts wakes up. We nurse and play and Piper is up soon after. I attempt to get them to play on their own so I can tackle some chores and start some dinner but Watts is weepy and doesn't want to be put down, or held, or looked at the wrong way. The rest of the afternoon is spent trying to appease the angry boy and attending Piper's "dance class" in her room.

I send a text to Michael at about 4:30pm to give him a heads-up about the state of the house and suggest using the remnants of a giftcard to get dinner out. We are waiting on the porch when he gets home at 5:15pm.

We head to dinner of which Watts eats nothing and fusses the whole time. We walk nearby to Target to return something and kill time before bedtime. Watts loses it in the store and we head quickly home to start bedtime routine. It is 6:45pm.

From 7-9pm we attempt to get both kids down and asleep. By 9pm they are both out and we crash on the couch. Michael works on some insurance paperwork and I start wrapping some presents for our nurses. We watch a Netflix show about the Alaskan frontier and kill time till 10:30pm when we give Watts his chemo (down his ng tube). We wait for thirty more minutes so we can start his feeding pump on a thirty minute delay. We go to bed. Watts is up at 2am for about an hour with me. Michael is up at 3:30am to turn off feeding pump and flush his line with water. Piper gets in bed with us around 5:30am. Watts wakes up at 6am.

And it is a new day.

[The pictures all depict beauty... no messiness or crying, just the winsome beauty of my three year old and the soulful looks of my warrior boy. Funny how that is. A little step back plus some perspective changes everything.]


  1. I know this is true. I've been there and seen you in action! May God strengthen and encourage you one more day as you continue this exhausting journey. I love you, daughter!

  2. I spent a bit of time with my two when they were younger in the pit/orchestra part of the mall. Most of the time it is empty or has a few people resting. With littles like yours, you have to go to the bottom where the fountain is. I checked their website, because in past they used to have a snow storm a couple of times a day during December in there.

  3. I'm pretty impressed that Piper will dance in her room for a whole 30 minutes! Elodie will "dance" to music for like 30 seconds before she gets too distracted and just wants to run back and forth through the house, all the while saying "run with me, mama!" And which I usually can't do because I'm holding Miriam or doing the dishes or whatever, but even if I can, I really don't want to. And then I feel guilty cause how hard is it, really, to run with my 2 year old for a few minutes?

    You're doing such good work, Hannah. Kingdom work. I'll pray for extra strength and endurance for you for those long, long days. (and long nights, too)

    1. Thanks, girl, for the encouragement. And Piper will only dance for 30 minutes if I am physically present and at least occasionally conversing with her. She literally follows me around holding the Ipad playing the music asking me to dance with her or explain to her what a song means, etc. Sweet, social girl.

  4. Thankful for you heart, Hannah. Those babies are so blessed to have you have their momma.

  5. "It is now only 9 am"... I know this feeling well. And yes, screen time definitely does not count until after 7:00 am. May God continue to give you the physical and emotional strength for the journey! Btw, it does get easier... I know your experience is obviously different and far more challenging than mine, but it does get easier as they get older :)


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