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.