366 Days with Leukemia

Shuffling along towards the finish line

Tag: maintenance

January 7, 2013: recap

I want to write some sort of wrap-up post to the 366 project, but days keep going by and, for whatever reason (mostly lack of energy), I just remain silent. I have a lot of feelings about the project’s end: nostalgia, relief, embarrassment [that I've kept track so diligently], and pride [that I've kept track so diligently]. Perhaps, instead of a grand wrap-up, it will just come out in bits and pieces as 2013 starts to show it’s face. Despite having been one of the three calendar years that our daughter was treated for cancer, 2012 had more good days than bad. See? (Just email me at patientobservations@gmail.com for the video password!)

366/366: family portrait

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And just like that, the year and the 366 project came to an end. I didn’t quite get 366 photos out of it, but I keep seeing the farmer in Babe looking at me and saying, “That’ll do pig. That’ll do.”  See you in the New Year!

365/366: pseudo-sledding

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364/366: first haircut, part two

This was an infinitely better first haircut experience than last time.

For the first minute or two, she wasn’t so sure . . .
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But, soon, the firetruck chair, pink electric buzzer, and mention of a post-haircut lollipop all combined to make for a pretty fun time.

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For at least the first year after she was diagnosed, there was always this background noise in my head that constantly asked, “What have they done to my child?” The chemo, the hospitalizations, the steroids, the discomfort. She was a fat, bald, uncoordinated, limping, grouchy mess for such a long time and it felt like, in the process of saving her life, they were leaving her broken. I wondered what all this treatment would do to her long-term psyche and how would she process all the bad stuff she had endured.

I know we’re not done yet, but it feels like we’ve come out on the other side. As we drove away from the hair salon, J and I were talking about how proud we are of her (this is something we talk about a lot lately) and the way that she approaches life. She waltzed into the hair salon, briefly felt apprehensive about the new experience, resigned herself to the situation, and spent the rest of the time being goofy and charming. I don’t wonder anymore about what treatment has stolen from her childhood. She’s cautious but brave and confident and while I think some of that is innate, I also think that going through treatment has given her a little extra body armor.

I have a tendency to over share with the whole cancer thing (blog much?) but it’s hard to avoid talking about something like that and pretend it never happened – that it’s not still happening. I realized today, though, that as she moves forward through life, she’s probably not going to even mention the fact that she had cancer. Maybe it will be a fun novelty for parties? Taking a sip of her beer, “Yeah, I had cancer when I was a kid . . .” and the other college kids will look at her and say, “Shit! That’s crazy!”

I wanted to tell the lady who cut her hair today the whole backstory and explain why this hair cut was extra special; I felt compelled. Neither J nor I mentioned anything though except for a vague mention that we had cut her hair before at home once. So, instead, she was just a healthy little girl getting her first big girl hair cut  – which is how she saw the whole thing anyway.

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362/366: too cold!

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This is, quite possibly, my favorite face she has ever made.

359/366: santa came early!

Santa knew that we had a busy day ahead of us on Christmas day, so he visited Nona and Bobo’s house on Christmas Eve, just to help us get a jump on the present opening. While Elsa was getting out of the bathtub, we heard him down in the living room, ringing bells and yelling “Ho Ho Ho! Merry Christmas!” but by the time we made it down to the Christmas tree, he had already flown off (but not before taking a bite of his cookies).

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Perfect end to Christmas Evening

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358/366: Italy x-mas

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Friends of all ages! Steroids were thankfully out of her system (only 24 hours later!) and there was minimal fighting among the little ones. Good food. Secret Santa. Everyone in their pajamas. Success!

357/366: steroids + holidays

We tried to have an early Christmas/birthday dinner for Uncle Jay. Steroids got in the way.

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354/366: otra vez

Well, there were steroids back in July.

And there were steroids back in September.

Here we are again:

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New development in steroid week: the child watches TV now! Granted, the TV watching poses it’s own set of challenges, in that, any threat of turning OFF the TV instigates house-shaking, earth-shattering tantrums. I have a lot of hang-ups about kids and screens (arguably, this is a hang-up about my own screen addiction), but I made a decision that steroid week is definitely NOT the time to try and swim upstream against her Dora addiction. As long she remains glued to Dora, steroid week is oddly quiet this time around. And quiet is OK. (This picture was clearly taken during a brief please-use-the-potty-break from Dora. Chaos ensued).

353/366: side effects

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It’s always alarming how, by the end of a chemo day, she looks like a totally different kid. Somehow paler and with these wicked dark circles. It’s hard to imagine that she always used to look like this (plus the bald head, plus the chubby steroid cheeks). Recently, she’s also started with this mystery rash on her face that her oncologist thinks is probably related to her 6-mp (mercaptopurine). Just waiting for it all to clear her system now . . .

352/366: maintenance, cycle 4

Pre-spinal tap hang-out with Cardeents:
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Spinal tap prep
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Post-spinal tap pleasant delirium:
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Spinal chemo? Check. IV chemo? Check. Now just four hours for her IVIG infusion (and 5 LONG days of steroids) and we’re DONE with the hard part of maintenance Cycle 4! And look who can drag her own pump around now (while devouring lollipops, no less):

I wish we could communicate to Elsa just how proud we are of her and I hope someday she knows how lucky I feel to be the person who gets to sit by her and hold her hand through these days. I’m often find myself stunned by this hardcore little person who was very recently part of me but who is now, very much, her own person.

351/366: caged

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350/366: no diapers

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My mom has a few pictures of me sitting on the potty when I was a toddler and I remember being vaguely mortified by these pictures as a teenager. For Elsa’s sake, I won’t post the picture that I really love of her from today – the one of her sitting on the potty, eating an ice cream cone. You’re welcome, future-Elsa.

Just know that, in this picture from our music class, she is officially diaper-free. We have arrived in the sacred land of officially potty-trained and it’s glorious. Granted, we waited until almost her third birthday, but, after all the nonsense her body has been through, I had put my foot down about potty-training. No way was I willing to put in any real effort, nor was I going to fight with her about it. So, this past Wednesday, after some weeks of her seeming really ready, I told her “Oh darn! We don’t have any more diapers. I guess you’ll have to use the potty today.” And that was that. It wasn’t really potty training so much as it was, “Here. Can you use the potty now instead?” and she said, “Ok.” After the past 18 months, we really needed something to be super easy.

349/366

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Elsa woke up with a repeat episode of whatever happened back on the 21st of last month. Lethargy and then an episode of throwing up, followed by, thankfully, total recovery. Not sure if it’s nausea related to her nightly chemo or a minor stomach bug, but we generally take the rest of the day off. Then, around 9:45 AM, NPR announced the school shooting happening just a few towns away. I plopped Elsa in front of various mindless screens for the rest of the day (Dora the Explorer, apps on my phone) and spent the rest of the day totally unable to function. I alternated between listening to the news and then, shutting off all media sources because the whole thing felt too unbearable. Like I’m sure every parent listening to the events unfold, I just couldn’t seem to remove myself from what I imagined was happening in the minds of those parents. Parents just waiting to hear if their child was going to walk out of that school. Parents who could not physically get to their child and put their arms around them.

You start to sort through your past memories, wondering at your own moments of deepest agony and placing them on a scale. Usually, there is always something that can far outweigh your own worst moments. And then, sometimes, you find something that is just the heaviest and you are forced to grab on to your own worst agony and cradle it and gasp at just how lucky you are to have had the scales so tipped in your own favor.

J and I split the nightly chores at around 11:00PM. Someone takes out the dog. Someone gives Elsa her chemo. J usually takes chemo duty and sometimes even the dog too. Tonight, J had to work overnight, so I had to do both chores alone. The day-to-day drudgery of chemo duty sometimes gets the better of me as I lay on the couch, wishing I didn’t have to do anything else for anyone else. I sit, nestled in a warm pile of blankets, and I huff and puff that I just want to be left alone, quiet and selfish. Tonight, I was reminded of how absurdly, acutely, wildly lucky we are to throw off the blanket, walk to the kitchen, set up the various cups and syringes, put on our gloves, crush that tiny pill, mix it with water and apple juice, suck it up in the syringe, sneak into our daughter’s room, place our hand behind her head, lift her a few inches, squirt the medicine into her mouth, whispering “It’s time to take your medicine.”, watch her swallow, listen to her incomprehensible delirious murmurings as she rolls over and resettles in her bed. Sniff her hair. Kiss her forehead.

348/366: foam pit

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Best part of gymnastics? Obviously, the foam pit.

I can almost look at this picture and not focus on the fact that she is rolling around in a giant germ pit. Almost.

345/366: rainy day

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A rainy, cold day on vacation with a two year old means a visit to the local Children’s museum.

343/366: kids and dads

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Some friends joined us on vacation. Thank goodness for dads who entertain kids by any means necessary.

342/366: vacation

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The first 10 months of treatment made vacation a total impossibility . Weekly chemo, seriously compromised immunity, a near-constant case of grumpy-toddler syndrome (aka. toddler on chemo syndrome), and our fear of going more than 60 minutes away from our children’s hospital kept us pretty homebound. Since maintenance started though, we’ve managed a few family trips (however arduous it was to plan them). We went to Brooklyn back in June and then there was our amazing weekend at our friends’ pig farm in August.  A dear friend gave us a week at her time share and we thought it might be nice to get away for a few days so we headed up to New Hampshire for some snow and jacuzzi tubs. This was the farthest we’ve ever travelled from our home base since her diagnosis and we were two hours from the closest major medical center that would be able to handle Elsa’s care. Of course, because I am who I am, I called Maine Medical Center ahead of time, figured out their procedure for seeing pediatric oncology patients and programmed their number onto the speed dial on my phone. I also found the closest local hospital (20 minutes away) in case of actual life or limb threatening emergency (like, she’s not breathing) and programmed their number into my speed dial too – just for fun. Prepped with our cooler full  of medicine and numbing cream, the thermometer, and my trusty speed-dial, we headed north. Thankfully, no calamity befell us and, as you can see, Elsa was very excited about our “vacation house!!”

340/366: holidays with ekeko

The promised sequel to 337/366: First Tree.

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And because I just can’t resist, behold, the angel watching over our house:

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(*For all curious parties, this little guy is an ekeko that I picked up at a Botånica while living in Queens. I like him because, a) the ‘wealth and abundance’ he has brought our house has been plentiful, b) I think it’s hilarious that we are supposed to provide him with cigarettes, c) just LOOK at him. He’s amazing.)

339/366: wonderland

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Sometimes on rainy days, we head down to Ikea for a day of climbing furniture, running the halls, playing with toys, eating in the child-friendly cafeteria, and meeting other kids whose parents have brought them there to do the exact same thing. Before having a child, I never realized that Ikea’s true purpose is not as a purveyor of cheap, build-your-own, junk. Ikea is actually much more like Disney-Land minus the terrifying costumed characters, long lines, and crowds. Ikea is my rainy-day oasis.

338/366: holiday cookies

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All I can think when I see this picture is, [To the tune of "My Bonnie Lies Over the Ocean,"]: “My belly lies over my cookies.”

Also: These were officially the worst cookies ever baked and had to be promptly thrown away after we tasted them. Will reattempt.

337/366: first tree

We got our first family Christmas/Holiday tree today. Despite having no real religious beliefs, we’re trying to set up some family traditions and just run with it. Hopefully, we’ll figure out what it all means before she starts asking questions. Or, I suppose, we’ll make up the answers as the years go by. First favorite holiday tradition: The Tree Cutting Expedition!

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Success!

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Stay tuned for Part Two: Decorated Tree

336/366: fire hose

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Unrelated to this fire hose or to the neighborhood holiday festival that brought us to this fire house: Today is Elsa’s 500th day of treatment. Whenever we hit these big numbers, I travel back to our third day. Day 3 when Dr. Parikh told us, “She will need two-and-a-half years of chemo,” and I furiously did the math in my head . . . she will be 3.5 years old when she finishes all this? IF she finishes all this? I could never have fathomed today, Day 500, at the holiday fair. An evening of making cookies and eating absurd amounts of free candy and aside from having to run back to the car for the Purell and giving her a nightly dose of 6-MP later that night,nothing today really had to do with cancer at all.

332/366: tell me a joke

november 27

331/366: bring on the holidays!

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330/366: thanksgiving part deux

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329/366: slow shuffle

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327/366: thanks

Our Great Stuff / Awful Stuff chart still holds true and, for that, we are thankful.

We are thankful for a dog who puts up with this nonsense every morning before 7:00AM.
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We are thankful for cornbread casserole muffins (and dads who make them).
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We are thankful for this little girl, trekking through the forest, dressed like a miniature, stripe-addicted, protestant nun.
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We are thankful for favorite uncles.
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We are thankful for trampolines.
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We are thankful for these guys.
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And this guy.
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We are thankful for big backyards.
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And healthy, happy, football players.
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326/366: holiday spirit

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Last year’s Thanksgiving took place during a pretty rough chemo spell. Then Christmas was just a total wash with hospitalizations and steroid misery. This year, the stomach flu (or possibly a reaction to her IVIG) visited Elsa this morning, just in time for Thanksgiving. Thankfully, by evening, she seemed put together again and, perhaps, Thanksgiving will be salvaged after all. The consolation is that THIS is our last holiday season on treatment! Shuffling along. Moving forward.

325/366: start of a great novel

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324/366: totally uneventful

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Happy to report another totally uneventful clinic day done and gone. IVIG infusion onboard for another month so that we can continue traveling through this cold and flu season with our fingers crossed and our immunoglobulin replenished (thankfully, since she her IGG had already dipped into the low 400’s). The rest of her counts were excellent: ANC 1400 (love it when it’s not too high, not too low), and the rest of them all in a healthy range too. Even her liver seems to be taking a break from it’s frequently elevated levels that usually indicate that it’s tired of processing her nightly chemo.

As for the pictures: There is a nun (sister?) who volunteers on the Heme/Onc floor every Monday with one of her many puppets always sitting on her lap, chatting with the kids. Today, it was Carlos. It’s taken months, but Elsa has finally warmed up to the lady (sort of). Then, we returned to our room to watch TV, eat lollipops and lunch. Finally, a nap and by the time she woke up, we were done. Can’t ask for better than that.

322/366: for the record

Just for the record, there is no farm we like more than Clawhammer Farm (as evidenced by our joyous Weekend at the Farm and Farm Weekend Continues). Unfortunately, Clawhammer is five hours away  (which might as well be in Albania when you have a 2 year old). Now that we have proclaimed our love for Clawhammer, the two farmers who keep the place running, AND their giant, snorting (delicious) beasts, I would like to say that we also like exploring local farms here in CT. Today, we visited Creamery Brook Bison farm and took a ride into the field to see these guys:

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Despite her apparent distaste in this photo (a look she has perfected), Elsa loved the whole experience:

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We visited with our friends, which made the day extra fun.

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Plus, they had quite a few novelty animals for the kids to gawk at:

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321/366: family fun amusement park

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For me, the mall ranks up there with: hospitals, sitting in New York City traffic, and the grocery store on Senior Discount Day.  There is almost nothing I dislike more than shopping at the mall. The one time per year that I end up at the mall for a bra or a pair of jeans, I always leave feeling depressed, ugly, fat, and totally disappointed in humanity. Lately, though, as the sun has started setting at noon (at least it feels like noon) and we are learning to slog through our 20 hours of daily darkness, the mall is actually becoming our own personal family amusement park. That’s the great thing about two-year olds: EVERYTHING can be fun. Apparently, even the mall can be fun. We don’t go to buy anything and it’s actually almost like a fun-filled children’s museum: we go play on the ipads at the Apple Store, we jump on the bean bags at the bean-bag furniture store, we drink free tea samples at the tea store, we eat free sample snacks at Harry and David, and we use the loooooong hallways and hundreds of frenzied holiday-shopping zombies  people to practice our running, jumping, and dodging skills. This time of year (apparently Christmas now starts before Thanksgiving?) comes with the added bonus of holiday decorations and Santa Claus sitting on his throne in front of a giant, Disney-movie-themed snow globe. I could wax self-righteous about the horrible commercialization of Christmas and the downfall of humanity, but look at this girl. She freaking loves the giant, Disney-movie-themed snow globe.

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318/366: reading to the baby

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317/366: gymnastics returns

As an ex-gymnastics coach, Elsa’s grampy (AKA “Bobo”) is a gymnastics enthusiast. He tried to sign her up for gymnastics as soon as she could hold her head up but they told him he had to wait until she could walk before taking a class (makes sense, no?). So Bobo diligently worked with her on her walking skills (like, with exercises and stuff) until the day he proudly brought her to her first day of gymnastics class right after her 1st birthday. As you can see, she was impossibly cute (and the youngest baby in the class by a few years).

Things I love about that video: her inability to remain upright for more than 5 seconds, the horrible background noise of children doing gymnastics, her blue, velour paw-print wrestling suit.

Anyway, that was 4 months before she was diagnosed, and Bobo was very sad to have to pull her out of her classes. Each phase of treatment, he has hopefully asked if she will be ready to go back soon and we’ve had to keep postponing because of her low immune system. When we started this maintenance phase, her Oncologist gave us the green light on sending Elsa back to all her regularly scheduled activities. Of course, she and Bobo ran back to gymnastics!

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Sadly, this outfit is not the blue, velour, pawprint wrestling suit (she chooses ALL her outfits now), but the “tada” at the end almost makes up for it:

316/366: [second] cousins

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314/366: boo boo

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In case you can’t tell by the looks of things around here, our life looks suspiciously like a “normal” life now. One set of pictures from clinic each month and, otherwise, you are subjected to hundreds of amateur iphone photos of a mother who thinks her toddler’s antics are just the B-E-S-T (in addition to her being an infuriating tiny tyrant).

Despite our having settled into a new “normal,” – a phenomenon that all the doctors, nurses, and social workers insisted actually exists, back when our life was so incredibly NOT normal – so despite having settled, I must say that having a kid on chemotherapy has left me less care-free than I would like. At least once/week, I try to think up excuses to call the Oncology clinic to get Elsa’s counts checked, but I always stop myself, knowing that I’m heading towards a swirling vortex of worry. However, it’s mildly terrifying to be out and about in the world full of coughing and sneezing toddlers and to not know if Elsa’s ANC is 200 or 2000.

I’ve been monitoring and ministering to this small cut on her finger for the past week, trying to gaze into it like it’s the crystal ball to her immune system. It’s been healing incredibly slowly and getting periodically infected-looking, so I’ve deduced that, perhaps, her numbers are low? OR perhaps, if they were low, her finger would have already turned gangrenous and the slowly healing boo-boo is actually a sign that her counts are high? Perhaps too high? And perhaps, if her counts are too high, that is a sign that her chemo is not working? And perhaps, if her chemo is not working . . . I just had to erase the end of that sentence because it’s too hideous to even write. I’ve decreased the amount of time that I spend fretting over Elsa’s cancer by about 90%, but I still get wrapped up in these worry vortexes from time to time, despite my best efforts.

A little boy coughed violently into Elsa’s face today at the library. He coughed in that way that only a small germ-factory toddler can cough: with his mouth open, tongue out, arms down by his side, projectile sputum flying. Cough, cough, cough, sneeze. I’m sure this happens all the time at nursery school, but at least then, I’m not around to watch the infectious spittle traveling in slow-motion towards Elsa’s face.

I’m not religious (or even spiritual, really) but having Elsa out in the world has me struck with this compulsive need to constantly cross myself (something I’ve never done throughout my atheist upbringing and which I had to google in order to figure out if I touched my forehead or shoulders first). In the name of the father, the son, and the holy spirit, amen. Please just let her be OK.

313/366: false idols

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312/366: winter arrived

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Obviously the sequel to 309/366: Winter is Coming

311/366: favorite holiday!

Election day is my new favorite holiday! I love that there is no pressure to buy presents and I LOVE the desperate anticipation of election night TV coverage. Plus, it’s a holiday that actually means something! Something big!

New family Election Day traditions include: family voting, make-your-own pizza for dinner and root beer floats for dessert (stole this idea from a friend)! Now if Obama can just win the darn thing, it will make for a most perfect day!

In an effort to keep J off the blog, I haven’t posted our family voting picture – I assure you that all three of us sported our “I Voted Today!” stickers. Instead, you’re stuck with a photo of Elsa and Dweeps drinking root beer floats and goofing around.

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Also, just in case it’s not obvious, J and I voted for Obama but Elsa refuses to tow the family line (clearly, this will be the first of thousands of oppositional stances she adopts, just to break her mother’s heart):

310/366: winter is coming

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(Yes, that is a reference to my love of Game of Thrones)

309/366: “telly dit on mislap!”

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Translation: “Stella sit on my lap!”

308/366: two at the table

Lesson learned tonight: Despite the seeming paradox, it is actually SO much better to go out to a restaurant with TWO kids instead of just one. These two kept each other quite busy playing with a dinosaur, and crawling under the table together during dinner. Subsequently, the adults at the table were able to actually finish a few complete sentences uninterrupted and enjoy their meal. Genius!

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307/366: singing duo

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306/366: weaning

As our nursing relationship gradually winds down, ever so slowly, she still finds the time to make sure Baby Bert has ‘na na.’

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305/366: real Halloween

Last year’s Halloween was obliterated by the Snowpocalypse and a day of chemo, so this year, we had our first proper Halloween. J and I laughed because, despite her initial hesitation about all of the novel experiences (Wait, I’m going to wear a COW costume, walk around the street in the dark, ring stranger’s doorbells, yell “Trick or Treat,” and they are going to shower me with candy!?”) – she learned to love Halloween pretty quickly.

Not sure this is a good idea:
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Getting into the swing of things:
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Trick or Treat!
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304/366: attic find

We spent most of Hurricane Sandy cleaning out our attic. We never lost power, so we took advantage of J’s day off from work and sorted through endless piles of junk while the storm raged outside. Elsa found this old wagon that we had tucked away and has been pushing it around the house ever since.

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I took this picture and immediately remembered a similar picture taken 1,000 years ago:

My heart officially aches.

302/366: double nappers

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301/366: just the two of us

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J and I needed to get away, so we packed Elsa up, shuttled her over to Nona and Bobo’s and spent a much-needed 24 hours in NYC just before Hurricane Sandy descended. Friends, beer gardens, and a visit to Greenwood Cemetery made for a perfect day.

300/366: not real problems

First, I would like to acknowledge that this is not a real problem, BUT, we are so busy! Not really too busy, but it feels like a seismic shift happened in our life and I naively didn’t see it coming. Our days are stuffed to the brim, busting at the seams, leaking at the weak points. We spent so many months AT HOME, just the two of us. I don’t remember feeling that housebound (I’m a homebody anyway), but I reflect back on our life from July 2011 - April 2012 (when we started maintenance) and our days were so free. We made our own schedule, ate breakfast for an hour if we wished (or two), moseyed our way through errands and lived a generally structureless existence. The big event of the week would be a visit to Story Time at the library. Now, nearly every day of the week, we have some sort of out-of-the-house event that dictates the day’s schedule: nursery school, me going to work (!!), gymnastics, clinic, speech therapy. I know that structure, work, and school is what your typical American existence looks like, but it’s a huge change for us. We used to have 5 days/week to act sloth-like, laze about and plan hang-outs and play dates. Now, we are trying to fit in all of those friends during just 1-2 days. Again, having too many friends is also not a real problem.

So, now, instead of our friends’ faces showing up a couple times a month in this photo project, we’ve got two in one day! I told you, our days are stuffed to the brim.

Today’s schedule:

9:00 – 11:30 School!

11:30 – 2:00 Baby Holding

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2:00 – 3:00 Nap in the car

4:00 – 7:00 Couch-sitting and dinner with Sarah!

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Sometimes, I feel overwhelmed by the activity and the bustle and the structure. Even when it’s for the much, much better, sometimes I need some time to acclimate to change.  I’m not always successful, but lately, I’ve been trying to draw on something I learned in the marathon. I have to take moments each day to steady myself in the present moment, wait a few seconds until it sinks in and say,

“We are so lucky to be able to run this race. We are so lucky.”

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