Saturday, May 2, 2009

Hello mudder

Lily has been referring to us as mudder and fadder lately. Perhaps she is smart enough to realize that I only repond to "mom,mom,mom,mom" every so often but that when she says mudder not only do I respond, but I giggle. Except at 3 am, no giggling then. Lily has been waking up in the middle of the night with a low grade fever most of this week. So of course I am on alert for potential complications. The 'just in case' bag that I unpacked last week is repacked. Thursday night her fever was borderline- 3 months ago I would have called the on call doc and taken her in- but I now know that means a 48 hour pass to the ward just for cultures and evaluation. I can not do cultures- but I can evaluate. I unwrap her blankets, give her a cool cloth and her temp comes down. By morning it's lower again. Hopefully it will stay low through clinic and we won't have to stay.

May day is Lei Day. Kiera and I spent the better part of the week making leis for our hospital friends. Yesterday morning we threw on the finishing touches. I pack for the hospital- which is a diaper bag, medicine pouch, an overnight bag, Lily's take along bag(pooh, baby pooh, nee nee and any other item of the moment), and a bag of 30 leis. So needless to say when a friend called to commisserate about how much she was taking for a weekend getaway- I was out and out bitchy. The whole time I was just keeping my fingers crossed that I wouldn't have to do a Tripler Weekend Getaway- complete with extra comfy bedding( rounding up as many blankets as possible to convert to a pillow since they are out of those) and the select bath collection ( the pre-moistened towelletes that leave you a little disinfected and definitely itchy- they say no rinsing required- but my rash suggests otherwise). I just want to be able to come home. I am hoping, hoping , hoping this trip will be uneventful. I hold the leis like peace offerings to the medical gods for a speedy uncomplicated visit.

I park on the ward side of the hospital. Superstition leads me to believe if I park on the other side, not only will we be admitted, but then I will have to move the car around. We are earlier than our appointment, but I refuse to go up to the ward to deliver the leis yet- if we do so, we will surely be admitted. We stop by Lily's surgeon's office to deliver a lei and head to clinic. Of course it's a weird Friday- half of our favorite people are off or sick. That's Ok- we leave leis for them anyways. It is eerily quiet on the floor. I shuffle the kids into the waiting room- and even though Lily shouldn't play in there with a cold- it's better than them all roaming the floor. Also this should be the last appointment of the day- so theoretically the room will be cleaned and will sit empty until Monday. I see one of Lily's favorite nurses down the hall- he usually works upstairs, and then I see Elikia's sister. Now I am on the other end of the conversation- "how is she doing?" and her dad gives me the look that say "how the @$*! do you think she's doing?" and he has no words and I just want to find her mom and hug her but I know she is now vigilant by Elikia's side. He deflects to asking about Lily and I make sure to mention she has a cold, so we will try to keep her away from Elikia's sisters- as the sisters run in, excited to see Lily. I perch my personal bottle(pump size-not the wimpy little purse size) of sanitizer on the table and notice when Lily coughs- she pumps- then all the other kids pump. And then they all wave their hands in the air waiting for it to dry.

I can feel it in the hall. It's a presence, a weight. I remember that weight all too clearly. And part of me knows that someday it could be me and the thought of it almost takes my breath away. I put that part away. I drag myself back to the now. Phil is there. It's all I can do not to burst into tears when I see him. I find my angry spots- my go-to subject changers- guess what so and so said- yada yada. After all sometimes it's easier being angry than feeling. Phil kinda looks at me like- what's the plan? Oh. I had forgotten why we were here. I feel kinda bad asking for anyone's time when down the hall there is a little girl and her family who really needs it. I am tempted just to pack Lily up and take her home, we can do bloodwork next week. Just then Barb comes around the corner- where we at? I just shrug. She takes charge, and within minutes the plan is in place. While we wait for her bloodwork, we deliver leis to her friends upstairs. Her bloodwork comes back as low, but Ok. They don't even take her temp. I hope I don't now need to bring the gods lei offerings all the time. We get to go home.

Phil takes Kiera to run errands and I take the other 3 home. The little ones pass out and Phillip is drawing in the back so he won't notice and it hits me, the tears pouring out. I let them go and call my mom. After all she is one of the only people who really knows what this is like. She may be thousands of miles away, but she is always right there. She welcomes me to the elite club. She apologizes for not having thrown a party sooner, but my schedule seemed so packed. She tells me that family will support us, best friends will try to understand what you are going through, good friends won't get it but will be there to help, but no one can get it unless they have been there. Just because the inpatient treatment is over, the journey is not. Now we stop to reflect, take a moment to hope, and prepare for the possibility of things we'd rather never think about much less plan. It's like stitch says-it's small and broken, but it's ours. Moms of kids with cancer. We reach out to others when we can. We know we are not alone, but the loneliness engulfs us. We long for normal, but that mutates from day to day. We answer questions with "fine, hanging in there" when all we really want to say is *&^%! ^%$@ ! and *&#@! We can't think of anything we need help with when asked, yet are out of pull ups, the trash is falling out of the can, the weeds have weeds, there are more dishes in the sink than cupboard, there is more laundry on the floor than toys and we are relieved because it removes the dirt from view. And just when we start feeling the weight of it, a little voice pops into the picture.

"Mudder, it's time to do beads." And together we put the beads on her string, the beads we have earned together, but are hers. So maybe I'll tackle the dishes, laundry and trash after we string some beads. Or maybe I'll go back to making offerings to the gods- they apparently don't seem to mind my house being messy.


  1. The beads are an ironically beautiful badge of courage.

  2. Some time ago, a book given to Lily's great-grandpa Bourne had an inscription that said something like "The real heroes aren't those who have the one-off experience that saves the day, but the real heroes are the ones who get up every day and do it again and again no matter how tired ..." Jen and Phil - you are real heroes to your children and to me and to many others. Love - Mom

  3. Jem, your journaling is so eloquent, beautiful, and honest. I know I can not even come close to understanding your range of emotions but your descriptions just take my breath away and of course, bring tears to my eyes. You and Phil are amazing parents, people, and friends. I wish we could be there to be a more physical support to you guys! The Colberts Love The Mallorys :> Ang


Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)