5. All Together, All the Time

Naps and Sun Chips and fussing around our new room settling in. Medicine charts and Amazon deliveries and watching squirrels out the window. Communal kitchen living and pressing 3 on the green elevator and being ever so slightly bored then immediately feeling guilty for allowing myself to feel boredom at a time like this. Hearing other parents saying “we’ve been here 28 weeks” and feeling a swell of gratitude as Santa comes in and sits with all the sick kids on his lap. Eyes tearing up as we get served incredible meals and watch volunteers bake snacks daily and learn new ways we’re receiving generosity.

It’s been enough days here I’ve got a bit of a rhythm. It’s still too early to really know what to expect for Mercer to feel daily but we’ve had a few more energetic days where he walks down to the kitchen and eats breakfast and second breakfast and then almost immediately after lunch as well! The full Hobbit life! And then he’ll nap in the afternoon and just want to be still for a while. Then a burst of silliness. Then a calm evening. I go down two flights of stairs to go do laundry. I walk down to the kitchen to grab things or wash dishes or find a snack. Smile at other parents or hear the stories my dad accumulates throughout the day.

Mercer is rockin’ the independent meds life! He knows what to expect and knows all the funny things we’ve had to add to our routine. He can do the mouth rinse and he helps me get all his meds sorted and knows when it’s time to take them even! I’ve always tried to be the kind of parent who gets maximum buy in and engagement from the kids and to also explain things as best as I can and give lots of up front conversations and it’s really been put to the test here — and it works! Mercer is a confident guy who is empowered by knowing what he’s going through and knows he is strong and can do hard things.

We’ve got a drawer full of Lego next to a drawer full of his clothes and toys from home, toys from here, toys as gifts. They all know he loves Lego so every time he has to be extra brave he gets a new set from the nurses or staff! I keep feeling almost embarrassed by how extra the care and attention to detail and generosity is; it’s more than I could imagine but then I remind myself– this isn’t normal or small or easy. People who donate and spend their time, energy, money, passion, and giftings on helping sick kids are doing it because it matters and I don’t need to hold onto any negative feelings about it! These kids deserve it!!!

Fridays are infusion days for us until the end of the month when things get reassessed and they check to see if his cancer cells have responded the way they hope. So tomorrow we’ll take a walk to the hospital, ten minutes with him riding in the wagon, and he’ll get hooked up and have his meds and we’ll chat with the nurses and smile at the other kids and we’ll see how his little body responds. I try to think of each day in blocks, not painting a whole day as “bad” or “good” but breaking it down. The good bits go by so soon and are forgotten so easily and the bad bits feel eternal and cast a shadow on everything else. So taking it bit-by-bit helps us all feel as much hope and optimism as possible while making sure to stay in reality.

The truth of this is the same truth of all of life…it’s friggin hard and terrible and awful and also beautiful and encouraging and amazing! All together, all the time!