Happy Second Birthday To My Second-Born!

It’s been two whole years since this little spitfire shot into our world.

newborn

He was so chill and easy in the beginning, but we have learned that those first few months of peace were just the calm before the storm.

Before Hurricane Dezaroo hit.

And now he is TWO! This quote illustrates this stage of life perfectly, I think:

“It’s saying no. That’s your first hint that something’s alive. It says no. That’s how you know a baby is starting to turn into a person. They run around saying no all day, throwing their aliveness at everything to see what it’ll stick to. You can’t say no if you don’t have desires and opinions and wants of your own. You wouldn’t even want to. No is the heart of thinking.”
― Catherynne M. Valente, The Girl Who Soared Over Fairyland and Cut the Moon in Two

He says no. A lot. Mostly, “NOOO DOGGYYYYYY!!” He thinks Lambert is trying to steal his food, which is pretty funny considering he throws said food to Lambert when he’s finished eating it himself.

Sigh.

He has already taught me a lot in his two years. Mostly I have learned that everything I thought I knew from parenting Jack would be useless while parenting Dez. My two kids could not be more different! Although, they both have loads of personality, so I guess they have that in common.

Dez is active and loud and tests boundaries. He already struggles with major FOMO (fear of missing out) and fights sleep more than any other human being I know. He climbs and jumps and dances and runs and throws balls – he is always moving. He has a mean arm on him, too! Just the other day I found a golf ball in the garbage disposal.

If he doesn’t play ALL of the sports as he grows, I will be shocked!

It seems like the time has gone so fast. I barely remember his infancy. I miss that brief time when I could set him down and he couldn’t go anywhere! He is definitely now more of a little boy than a baby, and so very independent.

We weaned at the end of June and he did very well. He learned to sleep through the night at the same time (hallelujah! I finally got some sleep! Huge props to David for parenting solo for a week, which allowed this to happen!). A few weeks later we tried to separate our bed from the crib but…Dez climbed right over the side of the crib. So he was unceremoniously moved into his own (safe)room.

toddler room

Little toddler, big room!

The transition to his big boy room has not been easy, but it’s been a couple weeks now and he is adjusting. And so are we; we are figuring out that most things with Dez are just going to happen the hard way!

I’m sure we’ll get used to it, right?

Or, at least, it will all be worth it just to have this amazing, vibrant little boy in our life!

toddler on a swing

Happiest of birthdays, Desmond. Mama loves you like crazy!

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Double Digits

Tomorrow my first born son is ten years old. Double digits.

I’ve been trying to avoid thinking about this date as it loomed ever closer. The thought of Jack being TEN caused panic to bubble up in my chest and claw at my throat. My eyes would burn with tears and I had to hold back from clutching him tightly to me.

I didn’t don’t feel ready for this.

But the time is here nonetheless.

Jack almost 10

Looking like a teen!

One would think that after ten years as a parent I would feel more ready to let Jack grow up and move into the next stage of his life. But I haven’t been spending my time over the last decade preparing for this moment–not at all. After his cancer diagnosis, I focused on preserving his childhood as much as possible. And before that I spent a lot of time working to figure out how to be the mom he needed and haphazardly uncovering my own issues along the way.

I feel as if I’ve been sidetracked so many times. I’m not sure I’m much closer to knowing what I’m doing than I was on the day he was born. In fact, I feel that only now am I getting to the point where I can see the breadth of what I don’t know about raising a person to be a self-actualized adult. And I guess while focusing on all of that I simply forgot to prepare myself for the whole growing up thing.

But Jack will keep on growing even if I waste time being hung up on worries over the future.

Jack is an incredible human being. If I stop thinking about my own experience being his mother for even a second, I know that he will navigate the coming years in his own way and craft them into an adventure as he goes. That same creativity and empathy that seem to emphasize his youth right now will also help steer him on his path to becoming an amazing man.

I really just need to stand back and let it happen because, whether I’m ready or not, Jack is growing up.

Crystal and Jack in Bath

On an adventure together in England.

My Two Boys

I’m not sure that I say this enough, but I have two amazing kids. They are both sweet and adorable and they make me laugh constantly with their bizarre shenanigans. They take my breath away on a regular basis.

How? How did I get so lucky?

It’s incredible to me how different from one another they are, though. I can’t help but marvel at how two kids that have been parented mostly the same can be so very different. (Nature, I guess!)

Jack, my first born, is creative, funny, and sensitive…he has always had a carefulness about him that makes him seem older and wiser than his years. He has a unique way of looking at the world that influences everything he does – and really, everyone around him.

He worries about the future…about growing up and his childhood being gone before he is ready. I find it a bit strange considering the fact that his life thus far has not been exactly carefree, but it is one of the reasons why I am endlessly curious to see what his future holds and how he navigates this life.

Jack and dragon drawing

Showing off his dragon drawing at the oncology office.

Dez, on the other hand, is fearless and determined, albeit goofy as heck. He is not even two yet but this kid is full of energy and life. He never stops moving and is constantly keeping us on our toes. He reminds me of that old game on ancient cell phones called Snake. As the snake eats he keeps growing and getting bigger than he (or anyone else) can handle. But no matter how big he is or how many things he runs into, he gets back up and redirects himself around the obstacles.

His drive is completely foreign to me but already I admire him (all while knowing I will go fully gray by the time he is a teenager).

Dez taking a walk.

Dez taking a walk; he loves going outside.

The boys love each other so much. When Jack comes home from his dad’s, Dez is so happy he breaks into peels of laughter. He just can’t contain himself. They play together often – sword fighting with pool noodles or tickling one another or chasing each other around furniture. Our house is loud and boisterous.

I wanted this, dreamed about it for years, yearned for a house full of children laughing. I have my dream life!

I don’t always enjoy it, though. It’s not so easy to remember to do that when I’m running around preparing various meals, running to doctor and dental appointments, struggling over homework or diaper changes, constantly picking up after a toddler who doesn’t stop moving, the lack of sleep… It’s hectic and it’s easy to get swept away in the whirlwind of life with young children.

But I cherish these boys and my little family with every fiber of my being. I hope they know it.

The Terrible Toddler

Life with a toddler is full of surprises. Also, exhaustion.

A few days before Christmas (2015), at 15 months old, Dez took a few unassisted steps. He didn’t walk again until late February. At that point he spent about half his time lurching like a miniature Frankenstein’s monster and the other half of the time he crawled (or walked on his knees) at such a quick pace that he wore holes through the knees of his pants.

No joke!

This kid does things at his own weird, erratic pace.

Toddler loves Hendrix

Check out those baby blues!

He is now almost 20 months old and walking full time. He gets into EVERYTHING. He climbs onto the dining room chairs, tries to climb onto the table, opens the front door if we forget to lock it behind us, and attempts to throw all kinds of things into the toilet.

He is so active! We are so tired! Jack did not prepare us for this.

Desmond’s favorite past times are throwing balls, riding on his plastic tractor, eating constantly, removing his socks and making us put them back onto his feet, bossing the dog around, and endangering himself in some way.

Stairs are fun for toddlers.

Stairs are fun for toddlers. Less fun for parents.

He has eight teeth, and two molars are sloooooowly making an appearance.

Sleep is hard to come by in this house. I don’t believe that he’s slept through the night yet. (Yeah, you read that right – 20 months and has likely never slept through the night! Yes, I’m a little dead inside.) Since we co-sleep it’s mostly all a blur… He’s also still incredibly difficult to put to bed. We have started to use a sound machine at night in hopes of creating a more inviting sleep environment. Fingers crossed that it works and we start having easier bedtimes. We are pretty sick of tag-teaming to deal with hour-long tantrums at bedtime.

He’s also been fighting diaper changes for over a year now! Case in point:

Toddler tantrum

Diaper changes are the worst!

BUT! Just recently we discovered a show on Amazon Prime called Tumble Leaf.

TUMBLE LEAF IS MAGIC!

We turn Tumble Leaf on and Dez throws his arms straight up in the air and yells YAAAAAAY! He then lays down and stays still for a diaper change. It’s amazing! In fact, David told me that finding that show is my greatest life achievement. I think that illustrates just how awful the diaper change fights have been.

While Jack was speaking in sentences around this age, Dez has maybe 10 words (in English):

mama
daw (dog)
Jah (Jack)
tok (sock)
suu (shoe)
ball
hi
byebye
nigh-nigh
yay

Apparently, though, he knows some Cantonese, the first language of his daycare provider. It took us a while to catch on – he was telling us for months that he was hungry (“mum mum” in Cantonese means “want to eat”) and we had no idea. Chances are he can say a lot more than we understand.

Dez is cute and sweet when he is not driving us nuts. He loves to snuggle and nurse, sits on our laps to read a book or watch a show, and does goofy things like wearing his sunglasses on his forehead.

Toddler in sunglasses

Too cool to wear sunglasses properly.

Still, we wish he would sleep more.

Progress in Getting a Better IEP

After many years of back-and-forth with Jack’s school, we have finally gotten an IEP that I think we are all happy with!

For the first time since we started meeting with the educational team at the school back in 2013, they didn’t fight us on where Jack is academically. Everyone agreed that he is demonstrating the long-term effects of his cancer treatment. Everyone agreed that what we’ve been doing so far has not helped. Finally, the school accepted that the holes in Jack’s learning would not just magically fill up again now that chemo is done. They have conceded that Jack has a huge gap between intellectual ability and academic achievement in math due to processing problems (i.e. dyscalculia), memory, and attention issues.

fear of math

Does not compute… Photo © Jimmie, Creative Commons usage.

I can’t tell you what a relief it was to walk out of that IEP meeting last week and have plans in place – not just HOPE but plans.

Jack has four new goals written into his IEP, including learning to tell time*, learning to count money, practice basic math facts so that he can get 80% accuracy, and fraction learning in the resource room prior to learning it in the classroom. Accommodations will include shorter assignments, untimed classwork, and the teacher will make sure he understands instructions/repeats them back before left to do the assignments.

Jack previously had time one day per week in the Resource Room (which amounted to 75 minutes per month) along with two other students and no individual help. Now he’ll spend time three days per week in the Resource Room and one of those will be solo with the resource teacher!

It feels like the future is looking brighter! Even if these things don’t work, we’ll know more about whether Jack can learn certain things if taught in a different way or just…not at all.


* Jack has no concept of time – not hour of the day, not day of the week, etc. He can’t tell how long something takes or how much time has passed – whether it is nearing bedtime, whether it’s late or early in the day, or what day tomorrow is. He floats along and has to have everyone around him tell him what to do next. This makes time management impossible! Part of the problem is that he can’t hold onto information about sequences longer than maybe two steps (so even if he does know that today is Monday and tomorrow is Tuesday, he has no clue where those days fall in the sequence of the seven days of the week). Another part of the problem is that he has trouble with assigned meaning of things – i.e. a quarter is worth 25 cents because someone long ago decided that was the case; the value isn’t inherent to circular pieces of metal of that size. He can’t wrap his brain around that. It’s like it’s another language that he can’t comprehend – the language of sequences and numerical meaning.

It’s A Hard-Knock Life (For Us Parents)

I have a migraine right now and my hip is fucking killing me. I would love to go to bed – I don’t even care that it’s not even 9pm on a Friday – but I can’t go to bed because Dez is trying to go to sleep in said bed and my presence is not conducive to him falling asleep.

This is parenthood. Sleep is like vacation to me – better, even, because it requires much less planning (and yet is no less elusive at times).

David and I are involved in a tag team effort at bedtime these days. I nurse Dez, then David steps in when Dez decides maybe he doesn’t want to go to sleep and tries to make a break for it. Daddy means business, though, and when he walks in the room, Dez knows his attempts at delaying bedtime are doomed.

Being the parent of a toddler is hard. I had forgotten just how hard. I guess that’s what happens when you wait eight years to have a second child! This little person who is most definitely his own little person and yet can’t do a damned thing for himself yet (except stuff too many yogurt melts in his mouth at one time) can make you question your choices in life, your sanity, and your self-worth. I had forgotten, but now I remember: I do not like the toddler years, Sam-I-Am.

Frankly, the pre-teen years aren’t seeming to be much better at this point. I’ve been meaning to write about all kinds of Jack-related things but it’s a big ball of complexity that I barely want to think about. The shortish version is this – he has been diagnosed with ADHD, dyscalculia (a math learning disability), and anxiety brought on by medical-related experiences. And in a year he goes back for more testing because the neuropsychologist isn’t sure she was able to get him all figured out.

At nearly the same time that we got the diagnoses and the rest of the results of the neuropsych testing, things at school got particularly bad. Jack and his teacher are at complete odds. It’s partly Jack’s fault and partly the teacher’s fault, and both of them are less than flexible people. We are working on Jack’s behavior, though I think we (and the teacher!) will just have to accept that Jack will have some bad days.

Therapy has been successful, though, so that’s a plus. Yay! I’ll take all the victories I can get.

Back to Dez…he’s a weird little fellow. He’s no longer that magical unicorn baby. He is vocal and can be clingy and so very quirky. He took his first unassisted steps a few days before Christmas, and then hasn’t walked since. He just goes around walking on his knees (which are now quite callused). He doesn’t say much, either. He has some words but very few that are clear. That doesn’t stop him from chatting, though. He talks a LOT – just not in English.

He also doesn’t sleep for shit. He is a terrible, no good, very bad sleeper. I think he must have gotten it from David because Jack and I both excel at sleeping!

He is a great eater, though. He’s got Jack beat on that!

So clearly we’re living a hectic existence right now. I know it won’t last forever and one day I will look back and miss the moments where Jack helps his brother walk around the living room or Dez snuggles up to me for midnight nursing sessions…but right now I am dreaming of peace and quiet.

Fewer headaches and a massage would be lovely, too.

No More Kids, Man

I thought it would be different this time.
I thought I was prepared.
I had doubts, sure. I started worrying as soon as I knew I was pregnant. But I reassured myself, and David reassured me.

In some ways, I prepared well. I was careful to stay on my anti-depressants. I said ahead of time – I would only breastfeed if it wasn’t torturous like it was the first time around. I took three months of maternity leave, instead of 6 weeks.

And many things have gone more smoothly with this second child. Labor was fairly easy, as was recovery. Dez has been a pretty easy-going baby. Breastfeeding hasn’t been nearly as horrid as it was the first time.

But I’m still me; I don’t function well on inconsistent sleep, and I haven’t slept a full night since early pregnancy. I still have a sharp limit on amount of physical touch I can handle – and that is far surpassed on a daily basis (and all.night.long) by a clingy toddler.

I still give everything to those I love and forget about myself until I’m depleted and just going through the motions. And thus I no longer make time to craft or read or hang out with friends without a child to care for at the same time.

Look at how long I’ve gone without writing!

A few months ago, I changed jobs. I left a decade+ long career as an executive assistant (aka taking care of grown men) because I felt like I could no longer take care of people all day and then go home and take care of my family, too. Some people can do that (nurses!), but my tolerance for that type of work withered during Jack’s treatment. So now I am starting all over at the bottom with a new career and I enjoy it much more (minus the lower salary), but I feel like I’m still in the negative on my caregiving stores.

So, my kids aren’t bathed enough and their nails are too long. Jack is overdue for some health-related tests, and Dez doesn’t quite know what a toothbrush is yet (or a dentist, for that matter). My house is in a constant state of disaster. Anything that doesn’t walk right up and take what it wants from me is being neglected – my pets, my husband, my friends, myself.

I don’t know how to fix any of it, but I know how to prevent this from happening in the future – no more kids! I love Jack and Dez so very much, and it seems to be to my detriment. I’m sure it will get easier, but right now it’s awfully hard and I can’t survive it again.

***

I wrote this a couple of weeks ago on my phone and emailed it to myself to post when I got to it. And I didn’t get to it until today. I’m in a better place now mentally compared to where I was when I wrote it, but I do think it’s a good idea that I’m done having kids. That makes me sad, but I’m coming to terms with it. I love my family and I need to figure out how to keep myself on the up and up for the long haul!

Mom and Dez

Dez and me (’cause cute photos are a must).

Have you made a decision on whether you are done having kids or not? How did you come to that conclusion?

Keeping Your Toddler Busy When Traveling

Last week I hopped on a plane with my very active 13-month-old baby/toddler. Desmond and I took a 4.5 hour flight from San Francisco to Atlanta, just the two of us (well, and everyone else on the plane). We flew back home yesterday.

I will come out and say this for all to read – I was terrified to take this trip on my own. But that’s how most adventures in parenting start, right?

Airport baby wearing

Babywearing at the airport

To prepare, I scoured the internet for ideas for keeping small children occupied on airplanes. I found a lot of suggestions that work for kids over the age of 2 years – those kids that are less likely to eat the crayons or throw the blocks at other passengers. Dez is still not 100% accurate with putting food in his mouth – there is no way he would have luck drawing on a magnedoodle!

Having very little luck with my search on the internet, I proceeded to tear through my house looking for items that I wouldn’t normally let Dez play with but that also aren’t dangerous while supervised. I came up with quite a few things to put in my “forbidden items grab bag.” I then hit up my Facebook parenting groups to gather more ideas before heading to Target. (I came out spending way too much, but it was less than $100, which is kind of amazing for a trip to Target!)

In the end, I collected quite the mishmash of items to entertain my toddler on the plane. And thus I bring you tips for flying with a toddler (without losing your mind).

Ewokmama tips for flying with toddler

Ideas for Fun and/or “Forbidden” Items to Bring on the Plane:

  • a fun keychain with spare keys and a large paperclip attached
  • various expired membership cards
  • a bracelet
  • post-it notes
  • small, portable toys that are new to your toddler – we had Little People figurines, My Little Pony minis, a Little People clown car
  • a pill organizer filled with snacks
  • stickers
  • interactive books (i.e. a “slide & seek” book and Pat the Bunny)
  • a pack of playing cards from the $1 bin

My cell phone is the ultimate forbidden item, of course…so I also looked around the app store to find things that might appeal to a toddler. [Note: If your kiddo is closer to 2 years and above, Toca Boca makes some awesome apps.] The best app I found is called “Animal and Tool Picture Flashcards for Babies” by Open Solutions. It’s free and contains a mixture of animal photos and clip art pictures; when you tap on a picture, the app states the name of the animal and then plays a clip of the sound that animal makes.

That app was the best money I never spent! Dez LOVED it. Even aside from the animal pictures and sounds, he really enjoyed dancing to the background music. It came in handy in the hotel room later, as well.

A word of warning, though. Now that I’ve let Dez play with my cell phone, he is more demanding about it than ever. Still, it was worth it for peace of mind on the plane!

If I were to pick one item from the above list to suggest above all others (aside from the animal flashcards app), it would be the pill organizer filled with snacks. Dez thought it was great to point to the container he wanted me to pop open – over and over. The snacks were key! A well-fed kid is a happy kid!

Aside from items to schlep along with you onto a plane, here are a few more tips for flying with toddlers:

  • Opt for the window seat. Not only will your kid like the view, but you can use stranger anxiety to keep him from trying to make a run for it.
  • If you are flying with your child on your lap, upgrade to get extra legroom. You can let your kid stand up a bit or maybe even play on the floor (depending on how MUCH leg room there is). And in case of tantrums, flailing limbs are less likely to hit the seat in front of you.
  • Babywear through security.
  • Ask for an empty cup and/or water bottle for your kid to play with.
  • Make sure to nurse or give your child something to drink during take off and landing to help with eardrum pressure.

Hopefully these things will help you get through your trip without any meltdowns from your toddler OR YOU. If not and your kid has a tantrum, hang in there! And maybe buy your neighbor – and yourself – a drink to cope.

Moms and dads, what did I forget? What are your tricks for traveling with toddlers?

Oh, What A Year

Desmond is one year old.

Desmond's 1st birthday

Desmond looking handsome in a bow tie at his first birthday party.

That statement makes me want to laugh and cry and shake my head and hide all at the same time. Where has the time gone? How can I slow it down?

That seven-pound, one-ounce boy who shot into the world last September is now a real person and not just a squishy baby. He has preferences and makes them known! He has a firm place here in our lives and it’s inconceivable that there was ever a time he wasn’t around.

At his recent well baby check-up, Dez weighed in at 21lb. 12oz. and measured slightly over 30″ (they measured twice but didn’t get an accurate reading because he refuses to lay down and be still). [Side note: I've gotten quite good at putting diapers on while Desmond is on his hands and knees or standing up.]

David and I sat talking the other night (a rare moment when the house is quiet and we can both still communicate before passing out) about our second son and his future. He is a driven little guy. Dez never stops moving, seeking, daring. We already know he is going to test our limits more than Jack ever has – this kid has no fear. Not only that, but when he is doing something he knows he’s not supposed to do, he hesitates and looks back to make SURE we are watching him – once he has our attention, he cackles and goes for it! He is one cheeky little dude.

Peek a boo

Dez playing peek a boo

At a year, he is on the verge of so many things. We are hearing the beginnings of words. They all kind of sound the same, and he is very selective about using them, but I’m pretty sure he says dog and Jack. When Dez can’t see his dad, he stands at the baby gate holding the bars and yelling, “DAAAAHHH!” over and over until David shows up.

Baby yelling

Dez yelling, “Daaaahhh!”

By the end of our recent trip to the east coast, he squeaked out a “bye” and finally learned to wave (although, again, he does so selectively and often AFTER the person is out of sight). He says a lot of unintelligible things, as well – in particular he seems to love making a grand gesture by throwing his arm in the air and letting out a stream of baby babble as if he were giving a speech.

I’m hoping one day I can say, “Desmond is a great speaker” and NOT “my second son is a dictator.”

He is, in a word, ACTIVE. He is cruising on the furniture, crawling super fast (and only in the last few weeks have I noticed he’s on all fours instead of on his belly), climbing over the dog, and he took to the stairs at his grandparents’ and aunt’s houses as if he had climbed them before in a dream.

Baby climbing the stairs

Climbing the stairs at 11 months.

He loves to throw a ball and is surprisingly good at it! He digs being chased around the couch or peeking over the back at whomever is sitting there. He has recently developed a keen sense of whether the baby gate is open even when it’s out of his site and will stop whatever he is doing (often, nursing) and propel himself toward it. One of us then has to dash across the room to shut the gate just before his little fingers get in the way. Dez then wails loudly until we distract him with something else (“Dez! Look at the ball popper!”).

That kid loves to eat, as well. He waves his arms excitedly when food appears and demands to be fed – especially if others around him are eating. Yogurt melts and puffs are his favorite snacks, but he will try anything from egg salad to meatballs (making good use of his six teeth). Food makes him pretty freakin’ happy. Oh wait – EXCEPT cake! We’ve tried cake twice and he threw it on the floor both times. How in the world is this kid related to me?

Baby with first cake

Dez about to chuck his vanilla cream cheese birthday cake onto the floor.

Dez expresses love for us now and it’s the cutest thing! Yesterday Jack was upset and climbed into my lap for hugs. Dez piled on, laying his head against Jack’s back and started patting Jack’s shoulder. And when we wake up in the morning Dez likes to climb all over his dad and me and lay his head on our shoulders. He shares things – he always shows me the star map on his dad’s phone and, less awesome, he shares his food with the dog.

We have our challenges with him. Aside from the fatigue that comes with chasing an active toddler (or reading every book that he shoves in our faces), there is also the fact that he still doesn’t sleep through the night. Jack didn’t sleep through the night at this age, either, so I’m not concerned but I AM tired. Not only that, but many nights David is the only one who can get Dez to go to sleep. That usually involves holding him, SHHing, and letting him thrash and cry until he passes out. He used to fall asleep to me nursing him, but no more (except for naps). I don’t know what that’s about. There is also the fact that he won’t stay still during diaper changes, as I mentioned before.

Separation anxiety is at a peak right now, too. Dez hates it when anyone leaves the room, but especially when I leave the room. He also has stranger anxiety and had no idea what was going on when Jack came home having cut all his hair off this past weekend! Desmond could not get into my arms – and away from his brother – fast enough. On the bright side, I suppose that means he is good and attached to us. And luckily he warms up to other people fairly quickly.

So…here we are beginning the journey into year two. I find myself both excited and sad. I can’t wait to see what Dez is going to do next, but at the same time I want to savor the moments when my child is still small and roley-poley and his world is fairly simple. After all, I am keenly aware of how quickly nine years can pass.

All in all, I’m so thankful for this sweet boy and count myself as one lucky mama.

Daddy and toddler

Dez and Daddy

Cancer is a Thief

Another school year has begun. Jack’s fourth grade teacher seems likes she knows her stuff. Right from the start she walked the kids through how to organize their day so that there are fewer opportunities to “forget” homework; they carry a binder with a planner inside and dividers for each subject. Every day the class reviews what is to be done that evening and writes it in their planners. Ms. A is helping them establish executive function skills, an area in which Jack has a lot of trouble thanks to cancer treatment.

In addition, she is starting off the year with light homework that is mostly review material. Which is great…

Except that Jack is struggling a bit with even this small amount of homework. He is fighting increased anxiety and having bouts of depression. By the second week of school, he was difficult to rouse in the mornings. He drags his feet getting ready to leave and is incredibly slow and distractible when doing any task. He complains of stomach aches or nausea a lot. He speaks of the pressures of being in fourth grade and he despairs about growing up.

My son has turned into Peter Pan.

Last week I met with Ms. A and the school’s new resource teacher to review Jack’s IEP. Afterward I felt exhausted and defeated. I’d tried to explain the issues we’re dealing with but they didn’t seem to grasp it. I guess that’s not a surprise – I feel like I am gaining new understanding all the time about why Jack’s experience with cancer has had such a profound impact on him academically and emotionally. The territory we’re in – that of a childhood cancer survivor – is relatively new in the grand scheme of things. Schools and even our oncology team are still learning what the long term effects of cancer treatment are.

As a parent of a survivor, I get a unique and up-close perspective (lucky me!). I’m only now really coming to understand that cancer is a time thief. This effect feels more pronounced with a child – a treatment that spans three and a half years impacts many more developmental phases in a child as compared to an adult.

Jack Kindergarten

Jack, age 5, first day of Kindergarten

In school and outside of it, Jack spent much of the last three and a half years in a haze. Compared to other kids his age, he didn’t play much of the time – he didn’t have the energy. He went from being a happy-go-lucky five-year-old to an intense and conflicted nine-year-old…he didn’t have much opportunity to be a kid in between those two points in time. He didn’t admit it at the time, but he admits it now: he was afraid of dying.

Academically, we are observing that Jack is missing some key building blocks for math. This past Thursday, we spent at least an hour together going over a fairly simple problem – 3,000 divided by 10. It was as if he had never divided before. And while he can answer 5×3 relatively easily, 5×30 is a whole different ball game. He hasn’t been able to connect increasingly complex math concepts with the basics.

Some of the building blocks are missing due to frequent absences from school for treatment or side effects from treatment. He missed half of kindergarten and started first grade a couple of months late because he had no ability to fight off illness. Once he was given the okay to go back to school, he rarely attended a full week until sometime in the later part of third grade. Generally if he was too sick to attend school he was also too sick (or just plain foggy-brained) to do any schoolwork at home. We did our best, but he was going at a snail’s pace while his fellow students sped along at school. When he did make it to school, he felt lost and like an outsider.

Other building blocks are missing due to the effect of chemotherapy on the brain. One of the key chemotherapy drugs Jack was given went into his spinal fluid and is known to cause learning problems in things like math and executive function. We were warned about this, but it’s not something we had the time to worry too much about because we were so busy going to and from various appointments and dealing with administering medications or battling side effects. We had limited emotional capacity for worrying about that, in any case. It was always in the back of my mind, but I had no choice but to push it aside and carry on.

Now Jack is faced with trying to catch up in an environment that barely acknowledges that he has fallen behind. He has to work much harder to stay on track – both to fill in the blanks and to learn the next thing.

Meanwhile, he has boundless energy, almost like he’s been saving it up all these years. He wants to PLAY and EXPLORE and TALK. But fourth grade is stricter, harder, has one less recess, and more kids per class. Fourth grade demands more maturity out of the kids and it just happens to coincide with a time when Jack is trying to shrug off the very thing that demanded maturity of him too soon and attempting to, essentially, recapture his youth.

Jack DC Ball Pit

Jack, age 9, in a giant ball pit in DC

Jack feels a sense of unfairness and has articulated it in his own way from time to time. “I’m dealing with cancer; why do I have to do homework?” is one line I’ve heard on several occasions. And there is the repeated refrain, “I don’t want to grow up! It’s too much pressure!”

It has taken me some time but I understand now. Three and a half years of treatment left Jack with only vague memories of what a carefree existence was like. He has his life, thankfully, but he also has PTSD and lives with so much fear. He can’t get time back – cancer has stolen his innocence and so much of his childhood.

Many nine-year-olds struggle with school and homework – in that, Jack is not alone. But Jack is the only one in his class (and, as far as I know, the only one in his school) who is dealing with those things while trying to make up for years of lost time and heal his soul. The school faculty have no idea how to help him.

Neither do I, really, but I won’t stop trying.