Just Another Morning

6:45am – Time to wake up. Ugh. Maybe I’ll just stay here for a bit in this warm bed. Well, hm. I’ll see if I can start the wake up process with Jack.

6:50am – Attempt to wake Jack up. He doesn’t even stir. Go off to make coffee.

7:00am – Try to wake Jack up again. Make no progress, so return to bed to drink coffee and hope he’ll wake up on his own. Gosh, when do we hit the point where I need to find out if he’s UNABLE to wake up? Well, I’ll give it a bit longer – maybe he just needs extra sleep since he got chemo yesterday.

7:15am – He’s been asleep almost 11 hours…but he was feeling poorly last night…hmmmm, what to do. Okay I’ll drink my coffee and tend to my dragon game.

7:45am – Okay, obviously he needs the sleep – it’s even light outside now. I’ll let him sleep in and he can be late to school. I’d better let my boss know what’s going on.

8:30am – Jack wakes himself up with a few coughs and gasps. He complains he is having trouble breathing and drags himself into the living room and I make him breakfast. He complains that his arm hurts. He complains that his stomach hurts. He pounds his fist against his chest and mutters, “I neeeeeed to go to schooooool.” I tell him not to worry about it and just eat breakfast and see if he feels better afterward. I take his temperature, but it’s normal.

9:12am – Breakfast is finished, meds are taken, now he’s cuddling in bed with me while I work. Well, really, he’s slumped over in bed next to me. He has the colored pencils and paper that he asked for in front of him but isn’t touching them. Is he sleeping? No, he stirs. I wonder if I should call the clinic. I have gotten nowhere lately with calling the clinic. He was fine all weekend and now he feels like crap again. Ugh, chemo. I hate chemo. I hate this whole mess.

9:30am – The clinic calls to confirm ANC is 1,056 and that chemo has been started at the new, reduced dose. The nurse asks how Jack is doing and I tell her. She says to call if the breathing problem gets worse.

10:00am – Jack is bored. He gets up out of bed, then immediately lays down on the floor. He’s definitely not going to school today.

I give up.

Learning to Love Being Good Enough

It wasn’t until yesterday that I really started to comprehend just how differently this school year – and my LIFE – has gone compared to what I had thought it would be. My ideas on parenting have been challenged more than ever before but those challenges have led to a much better understanding of my role as a parent – an imperfectly perfect parent.

Jack attended school two days this week, and I felt proud of those two days. Two days at school is more than he’s done in weeks!

Since I’ve been home with him so much, catching up on work in between talking to doctors, running labs, or checking Jack’s temperature and assessing his symptoms, I’ve even cooked dinner a few times.

Me! Cooking! It’s unheard of! I’m proud of that, too.

I’ve essentially been a stay-at-home mom, a role that I never in a million years thought I could swing. I still don’t know that I could ever do it full-time (if, in fact, I could afford to, which I absolutely can’t), but since circumstances have deemed it appropriate for the time being, that is what I’m doing. And I’m doing a pretty good job. Not only that, but contrary to what I’d previously thought, the part where I’m home without much adult interaction isn’t the part that’s driving me crazy (the part where I don’t know what’s happening from one day to the next definitely is).

“You’re doing an amazing job homeschooling Jack,” his teacher told me last night at our parent-teacher conference.

Oh, is that what I’m doing? I hadn’t really thought of it that way. Is that what they call juggling five million things these days?

I honestly haven’t done much at all to “school” him (unless letting him watch Dr. Who counts). I hand him the schoolwork he needs to do (after rejecting half of the assignments as impossible or not important enough to complete given our situation), get him into it by asking weird questions about the content, and we discuss corrections when necessary. He almost never has to make corrections when it comes to language arts. Math takes more work thanks to chemotherapy, but David is great at working with him on that. I’m no teacher! I don’t even know how I know what I do know, so I pretty much fail at explaining the concepts to Jack. Thank goodness I am not parenting him alone and he makes it to school some of the time!

It’s probably clear I don’t have the most optimistic view of how I’m managing the schooling portion of our life (however! I think I’m doing a great job of keeping him alive!), so I was pleasantly surprised to hear at the conference that Jack is doing really well and is on track to meet (or succeed in some cases) all academic standards. At least, based on the thirteen days he’s made it to school this year (he’s been there 36% of the time!). His teacher had no concerns and really just wanted to share her observations and see if there was anything she could do to make things easier on us.

I love her.

We heard that Jack is a strong writer, as well as a fantastic artist. We knew the artistry part but I hadn’t really thought about him as a writer before, although I realized he’s been doing a lot more writing lately. It was nice to see some work that he’d done at school, which includes some pretty awesome story-telling that isn’t all about Dr. Who. (Maybe someday he’ll be a blogger like his mama!)


It’s all Doctor all the time at home.

He is conscientious and well-behaved. He tries hard and when he’s at school, no one can tell anything is going on with him health-wise. He has plenty of friends in addition to the ONE he’s told us about. In fact, when he is late to class, if he can’t quickly figure out where he needs to be, his classmates are totally on top of getting him oriented.


Seriously, that was SUCH a relief to hear. I’ve been worried about school but have had so little capacity to do more than what I’ve been doing. It’s nice to have reinforcement that the parenting I’m doing is good enough, especially when I can’t manage anything else!

And, heck, we all might be better off for it.

Just Write: He’s Okay…Mostly, I Think

“How’s Jack doing?”

I’ve been asked this question at least five times so far today. Each time I give the same answer in the same way, “Yeah…well, eh, mostly. He will be okay, I think. He’s just not feeling well after chemo yesterday.”

He was doing just fine last night. In fact, he was very energetic and LOUD, humming or squawking while playing with his Legos. It was overwhelming to me, as I’d just come home from my trip to Type A in Atlanta. I wanted quiet.

This morning, though, it was too quiet. Jack crawled on the floor from his bedroom to the living room. He laid down on the couch while eating breakfast and I covered him with a blanket while pushing play on iTunes so he could listen to The Postal Service at low volume. He ate his waffle slowly, and afterward he leaned on me to get to the bathroom to halfheartedly brush his teeth. Then I picked him up and carried him back out to the couch.

He talked in hushed tones and complained of stomach pain. I smoothed his hair away from his face as I took his temperature – 98.0 degrees. I asked if he wanted to try to go to school for a bit and see if he felt better. His big brown eyes squinted up at me and he said, “I just don’t have any energy, Mom.”

“Okay, honey. I’ll tell David to come home from work. You just rest,” I replied.

I looked at our finances while I waited for David to come home from work. I wondered if we could somehow make it work on one salary so that I could stay home full time with Jack. I worried this was a pattern that would not go away. I added and subtracted and, with a knot in my stomach, acknowledged that it was impossible – we have too much debt and a large mortgage payment.

I called the clinic to get confirmation of Jack’s ANC. The nurse told me it was sitting at 690, which is fairly decent but not great. She asked how he was doing and then said, “Call us if he isn’t feeling better by the end of the week.”

I called the school and answered the question again. Then I drove to work, where I told a few more people that Jack wasn’t feeling well. I got a call from my sister in the afternoon, and I spoke to one of the care providers at Jack’s after-school program – both asked and I explained in that halting way.

Jack’s okay…mostly. I think. We’ll see.


This post was inspired by Heather’s Just Write – an exercise in free writing your ordinary and extraordinary moments.

On The Mend

Today is my first day back at work after two and a half weeks of being off to care for Jack. I’m not gonna lie – it’s hard to come back to work. It’s hard not to have the option to nap some time during the day. But it’s also nice to be doing something that has nothing to do with my son’s health.

I am really glad the last two and a half weeks are behind us! A mystery illness causing febrile neutropenia, a hospital stay, tests galore, so many medications on a very rigid schedule…and so much boredom. There are only so many movies to watch and so many crafts to work on. We’ve watched Seasons 5-7 of Dr. Who several times over and Jack has either drawn or built several incarnations of the TARDIS.

Jack’s ANC recovered on Friday, so he was able to get off of the antibiotic he’d been on for two weeks, but then he was diagnosed with a bacterial infection called c. diff. It’s something that attacks a lot of patients who’ve been on antibiotics for a long time because antibiotics strip the good bacteria from the gut. So Jack started a new medication for that, in addition to restarting his chemo. Thankfully the new medication is not one that has to be given on a strict schedule so I am no longer getting up at 5 and 6 am. Yay!

And tomorrow Jack gets to start school! WOOHOO!

I’m excited for this school year. He’s starting relatively on time (this week will be the first homework week, so he hasn’t misses much) and his best friend is in his class this year. I met and spoke with his teacher last week and she is really great! We’re all more accustomed to the school/work/medications routine than we were when he started 1st grade, as well, so I think it will be a smoother year. I hope.

Now that Jack’s ANC is back up, he’s back on maintenance levels of chemo, and he seems totally fine, I’m feeling much less worried about him. I’m so thankful he’s on the mend and things are getting back to normal!

Summer Hibernation

I’m working on stress relief this summer. So far it’s going well. I’m taking a multi-pronged approach and I’m already feeling much more like my old self.

I like to call this my “summer hibernation.”


Firstly, inspired by Jack’s love of drawing, I’ve picked up the meditative art of zentangle. It’s super easy to start and you don’t have to be ANY good at drawing – it’s all dots and lines. In fact, I have the hand tremor of an arthritic old crone and I’m still able to do this:

Zentangling helps quiet my mind when my thoughts are racing and I’m feeling anxious. And it gets me off of my iPhone when Jack wants me to sit with him while he draws. The repetitive motions are soothing to me and unlike the glare of a laptop or smartphone, paper and pen don’t glow and overstimulate me or bother my eyes.


I’m catching up on television shows that everyone else has already seen – we just finished season 2 of Homeland and are about to start Shameless from the beginning. In between that we’ve been catching some comedy through Amazon Prime (Zach Galifianakas and Bill Burr). Jack recently introduced me to Dr. Who so I’ve been checking that out (we started off with the 11th doctor and he is my favorite right now!).

We’ve gone to the movies quite a bit. We’ve taken Jack to see Monsters University, Epic, and Despicable Me 2 (Monsters U was the best of those, IMO). David and I went and saw World War Z, as well, although I wouldn’t call that relaxing in the least. We came out of that theater feeling like we need to build a bunker ASAP!


We attended High Sierra Music Festival over the Independence Day weekend. That involved camping, swimming, eating, and seeing a crapload of musicians perform LIVE – including the very epic Robert Plant! My new favorite performer is Sarah Jarosz (we got to watch her perform with just her guitar in an “MTV Unplugged” type performance at a late night session). This song is breathtaking live:


I bought a Groupon for my husband and me to receive three massages each. We’ve both gone once so far and it was definitely the right choice! Two more sessions should help oust what’s left of last year’s balled up tension.


I’m being conservative with social plans, too. Usually when Jack goes to his dad’s (during the school year it’s on weekends, during summer he goes on weekdays) I tend to get all the ‘fun’ in but I’m slowing down and taking it easy. I’m allowing myself to be a bit anti-social so that I can recharge before the summer break ends. I love people so much, but they tend to wear me out. (It might surprise some of you to know that I’m on the introverted side.)


Other than that, it’s certainly helped my stress level that I’ve been able to focus on getting caught up (and ahead!) at work during the week since Jack is with his dad. Our debts are finally getting under control a year after we bought our house, which also takes a huge load off! Maybe soon we’ll even be able to decorate the place.


School starts in a little over a month. Until then I think I’ll keep hanging out in my cave.

What are you up to this summer?