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.

Jack Is 9 Years Old

My first baby turned 9 years old on Monday. It’s simply unfathomable to me that 9 years have passed since Jack was born – nearly a decade since he was conceived. As I wrote in his birthday card, there must be magic or trickery involved in the passage of time because it feels like only yesterday that he was born.

IMG_7417

Proof he was once a baby…

Jack has grown and changed so much in his 9 years. It’s highlighted especially next to his babbling, roley-poley baby brother who can’t walk or say a single sentence. Jack is writing poems and stories and reading novels. He has ideas about how the world works – and he expresses them clearly – and they are all his own. He is goofy and laughing one minute, and the next politely requesting that I not jokingly call him a weirdo. He is 4’4″ – less than a foot of height separates us now! His feet are sure to eclipse mine in size soon, too.

IMG_5614.JPG

Tween boy!

There are still some very kid-like qualities to him, of course. He still prefers imaginative games over board games. Although his diet does not resemble that of most kids (he would live on raw fruits and veggies if he could), he is still a pretty selective eater. He has branched out a bit – in the last 6 months or so he finally decided he liked pizza – but for the most part he eats like he did when he was 3. He loves to draw (as he has since he was 2), and has taken a liking to coloring, as well. He still loves to have books read to him before bed – we just finished Nightbirds on Nantucket and Harriet the Spy, and now we are reading The Tale of Despereaux and Alice’s Adventures in Wonderland. He could easily read these books to himself (he is reading Harry Potter & The Goblet of Fire on his own) but he is attached to the routine and loves the one-on-one time. (I love it, too.)

Jack is a cerebral kid – always has been. He has zero interest in sports and other physical pursuits, although he does run around on the playground with his friends (as long as they are imagining they are monsters or aliens at the time). He loves science fiction and is currently devouring any form of media on aliens he can find. He was perfectly happy to get a bunch of books for birthday presents this year – something that initially bummed him out at his 8th birthday party (although he appreciated it later). He poses questions about the world that are incredibly challenging to answer – and he likes to listen to science and history podcasts with me.

IMG_5414.JPG

Looking spiffy in a suit and tie.

Our relationship has changed somewhat, partially due to his age and partially due to the addition of Desmond to the family. I’m less the default parent that he turns to when he needs something. This has made his bond with David much stronger, and Jack seems to want to learn from David more and more. He has grown more independent, as well – he will disappear into his bedroom for extended periods of time to read or write or just be by himself.

He is such a sensitive, caring kid. He is funny and kind. He is smart, quirky, and just seems to have a special light inside of him.

I’m so glad that I get to be his mom and watch him grow up.

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10 Months Old

A catalog came in the mail a couple of days ago that advertised first birthday party supplies. It wasn’t until then that I realized that I need to start planning for Desmond’s first birthday. It’s only two months away – and the summer months tend to fly by at a quicker rate, it seems!

But let’s talk about Dez at 10 months. This recent picture caused me to dub him my muppet baby.

baby with crazy hair

Muppet baby!

It fits, no? That wide-mouthed grin and fuzzy hair is exactly the thing Jim Henson was all about. In fact, we’re thinking of dressing Dez up as Kermit the Frog for Halloween this year.

Or, even better in my opinion – Beaker!

Desmond doesn’t have real words yet, but that doesn’t stop him from orating steadily. He raises his hand to the air to call for attention and then lets out a steady stream of babble. It’s adorable. (Except when we’re trying to watch Orphan Black and can’t hear anything over his ranting.)

He is generally a happy little guy, but he does have a temper. When something is taken away from him (usually it’s a piece of fuzz he managed to find on the ground and attempted to eat) he stiffens his whole body, puts his arms down at his sides, and lets out a squeal of rage. He is pretty quick to get over it, though, once you distract him with something else – like the TV remote.

Baby with tv remote

Yessss Yessss, now I control it all!

He loves, loves, loves the TV remote. Our cell phones and the Playstation controller come in a close second. When he spots one of these items within his reach, he starts chuckling to himself. I’m sure he is saying to himself, “Yesssss, yesssss, I will soon have them all where I want them!”

Maybe he should be The Brain for Halloween…

He still prefers the army crawl over the more traditional crawl. He spends most of his time standing now, though, with a bit of cruising thrown in (if the TV remote is just out of reach). He hasn’t quite figured out how to get down from standing, so he usually just hangs out like that until his legs get weak and he falls over. Or he whines until we finally can’t stand it anymore and help him down (and then he cries because he didn’t want to get down, stupid parents!).

baby standing in crib

His two bottom teeth are in. One is slightly crooked, which just adds to Desmond’s charm. He’s getting more hair all the time, but the majority of it is still in the top middle of his head and it likes to stick straight up (see the part about being a muppet, above). I can no longer see any traces of positional plagiocephaly – which, whew! He still struggles with a nasty cough after his bout with RSV in April, though. He hacks like the most addicted little smoker, but it doesn’t slow him down. The pediatrician said he’ll likely grow out of it by age 2.

Food makes him incredibly happy. He will eat anything and seemingly never gets full! He is very demanding about sharing our food, particularly if that food is pizza or mashed potatoes. I now keep those little cereal puffs within reach at all times so that I can actually eat my meals.

baby eating mashed potatoes

Mashed potatoes on his face!

Dez can clap (which he does constantly), wave (which he does sometimes), reach for people, and he is starting to hold onto me when I carry him. He is ALWAYS moving, so he crawls off of me in the middle of nursing (but then always comes back for more) and he will not stay put on the changing table!

He loves the bath. He splashes and splashes, then cries when we take him out.

baby bath splash

We’ve started calling him the “gateway baby” – a term I first heard from comedian Jim Gaffigan. Think you don’t want kids? You may change your mind after meeting Dez – he is THAT charming!

We love our sweet second child and can’t imagine life without him!

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Hanging with Mom.

No Way Out But Through

When Jack was diagnosed with Leukemia three and a half years ago, I focused on the “End of Treatment.” I thought we would do what we could to get through the difficult treatment process, but that eventually we would be done.

Well, to be perfectly honest, I thought we would be done when the Induction phase (where remission is achieved) was complete – 30 days after diagnosis and the beginning of treatment. Then I readjusted my thinking – we would have most of the hard stuff behind us after Consolidation – the chemo-heavy “blast the hell out of any remaining cancer cells” phase. I figured Maintenance would be unpleasant, but easier that those prior phases – I thought we would pretty much be done once we got to Maintenance. But then Maintenance lasted over two years and while much of it went smoothly, we did not feel done at all – instead, the hardship of all we’d had to endure up to that point caught up to us.

THEN I thought – End of Treatment is the ticket! End of Treatment would come and this business would be behind us! But, well…

I’ve lost count of the number of therapy sessions Jack has had at this point. With this latest therapist, we’re at least past 10 sessions by now. This therapist has been the most helpful, and Jack has had two successful blood draws! By “successful,” I in NO WAY mean easy. There was shaking and tears, and both times I thought we would not get the draw. But Jack managed to push past his fear and do it!

The first time he was successful (after 8 therapy sessions and countless “needle exposures” at home), he felt jubilant and accomplished afterward! He even said it hurt much less than he thought it would. But the second time was harder for some reason, and afterward he felt tired and defeated and weepy. It didn’t help that one of the phlebotomists in the lab muttered, “He’s never going to be ready,” which Jack heard.

Two steps forward, one step back. Can I bill the lab for the therapy appointments, ya think?

As the therapist delves deeper with Jack into the medical trauma he has experienced, the emotions (mostly negative) get harder to deal with and manifest that difficulty comes out in various ways. Fear randomly comes and goes, insomnia often plagues him, and Jack has felt more of a need to cling to his parents. Some OCD tendencies showed up during the second blood draw, something we hadn’t seen in him before, and then again in his therapy session the next day. Depression – a despair that no 8-year-old should even be able to contemplate – came over him at bedtime on Sunday.

Having gone through trauma therapy myself, I know how hard it is and that when you are in it, it feels like nothing will ever be okay. There are many forces within our minds that try to protect us from feeling the pain of trauma – they tell us to run from even distant memories of it. It’s exhausting to fight your own brain. It takes a fierce, stubborn person to do it, and lots of support.

I have no doubt Jack can do it. We will support him every step of the way.

But he has many doubts and fears. After the therapy appointment Saturday, which had him so upset that he started to run around the room near the end and stopped being cooperative, I tried to reassure him that it’s all worth it.

“It doesn’t feel worth it! It feels terrible!”

I know, buddy. It really, really sucks.

The blood test results – what much of this effort and urgency is about – look pretty good. Jack’s immune system is recovering, which is very reassuring. But for some reason, his iron is super low and that leads to other worries, more medications (thankfully, just a liquid iron supplement at the moment), and additional tests.

We don’t want more worries, more medications, or more tests. Our cups not only runneth over from these things – they’re being crushed by the weight of them. We don’t want anymore, thank you!

We have no other choice, though, so it’s one foot in front of the other. I’m coming to terms with the fact that I have to stop thinking in terms of when cancer will be behind us. When you’re in it, you can’t see through to the other side.

You just have to keep going anyway.