Parenting 101 - Ewokmama

Yet Again, I’m Blogging About Mental Health

May 15, 2013 By Ewokmama

Today is Mental Health Month Blog Day. Mental health – and illness – is a topic of great importance to me and something I’ve written about before. It’s importance has only grown as I’ve gotten older. My experiences with mental illness have led me to get involved in helping others through sites like Band Back Together and I try to speak about my experiences openly and honestly whenever possible.

Did you know that a quarter of Americans experience a diagnosable mental health disorder every year? It’s highly likely that you or someone you know (or SEVERAL someones you know!) is dealing with mental illness. And yet, “research published in the Journal of Health and Social Behavior (Vol. 41, No. 2) finds that 68% of Americans do not want someone with a mental illness marrying into their family and 58% do not want people with mental illness in their workplaces.”

Whaaaat??

This is why it’s important to talk about mental health!

I was diagnosed at age 15 with depression after I read an article in a magazine. Mental illness runs in my family – my dad, my mom, my brother, my grandmother, and cousins have been diagnosed with various problems – but I was one of the first to receive a diagnosis and treatment. Once I was diagnosed, a number of my family members realized they struggled with the same issues as I did and sought help. Our family life improved drastically after we got help.

Getting help was the best thing I ever did – for me and for my whole family.

I thought I knew everything I needed to know about depression by the time Jack was born, over 10 years after I was initially diagnosed, but then I experienced Postpartum Depression and PTSD reared its ugly head. I threw myself into therapy once again, this time taking a multi-pronged approach with group therapy, skills building classes, and individual therapy along with medication. I went through a variety of these intense therapies for about four years before I felt like I could take a break.

Treatment has been tremendously helpful. In many ways, I am a different person than I was before that very intense therapy. I grew up with so much trauma and while that is common, it’s not easy to cope with. I came up with some very creative ways of coping but the coping didn’t end when the traumas did. And because I was so busy coping, I wasn’t living.

But treatment alone would not have done it for me. I needed community. I needed friends and family. And as difficult as it was to reach out, I did. And my friends and family kept me going throughout my treatment.

Now my son struggles to cope with the challenges in his young life, partly due to genetics and partly due to his experiences with cancer. I am especially thankful these days that I took the time to help myself! I am strong enough now to help him. I can tell him that it’s okay to be sad and that he doesn’t have to just CHEER UP and GET OVER IT. I can help him grieve and move on so that his feelings won’t haunt him for years and years. And I can show him how to ask for help from family and the medical community.

He doesn’t have to be alone.

It is my hope that – eventually – no one will have to go through mental illness alone. Mental illness was something I struggled with by myself for a long time and it wasn’t until I got help from others that I truly started to find healing. It was 100% worth it.

I encourage you all to share your experiences and to reach out to others – whether you are the one struggling or you know someone else who is. Even if the results are small, they make a difference and can change a life.

Filed Under: Getting my groove back, Issues, PPD Tagged With: depression, des-nos, Family, friends, Health, Illness, mental health, mental health month blog day, mental illness, ptsd, trauma 6 Comments

AT-AT Attack Battle Game Review & Giveaway

May 2, 2013 By Ewokmama

Are you ready for Star Wars Day? If your family is a lover of Star Wars, you can celebrate this epic day (May the Fourth) by winning the Angry Birds Star Wars AT-AT Attack Battle Game by Hasbro!

Now, we don’t play Angry Birds at our house. We tried the app – both Jack and I – but it just made us too angry. It is aptly named. Something about those pigs laughing at us hysterically when we don’t beat a level is too much. It was better for us to erase the game than it was to slam our phone and iPad against a wall.

We do love the concept of Angry Birds, though – a puzzle game where you fling birds at jerky pigs hiding in cleverly configured bunkers. Puzzle games and snark are right up our alley! When the Angry Birds Star Wars game came out, I really wished we did like the game (even if they did leave out the ewoks). So I was delighted to see that Hasbro created a physical game to putter around with. Who doesn’t love flinging flying objects in order to knock things down?!

We received the Angry Birds Star Wars AT-AT Attack Battle Game to test out. Here’s the description from Hasbro:

Stack, launch, and destroy with the AT-AT ATTACK BATTLE GAME, which includes 21 blocks to create the signature AT-AT, a LIGHTSABER LAUNCHER and 12 ANGRY BIRDS STAR WARS figures — including two that are exclusive to this set! Players can also unlock ANGRY BIRDS STAR WARS in-app content with a special code in each pack. (Approximate retail price: $39.99; Ages: 5 & up. Available: Now)

Now, I know this doesn’t have anything to do with the actual playing of the game, but I have to give a shout-out to Hasbro with regard to the packaging. There were no zip-ties and only one plastic tray to contain the bird and pig figures – the rest was cardboard folded in creative ways to keep the pieces in order. We got the whole set out of the box in about 30 seconds! THIS is frustration-free packaging!

My friend Sabrina and I went to town setting up the pieces for Jack (we were excited, okay!). The plastic headpiece for the AT-AT was a bit tough to put together, but it is sturdy so I think it will outlast many wallopings by flying birds. There is a beginning suggestion for how to set up the pieces on the AT-AT platform but there are a bunch of different configurations you can come up with – it’s a bit like Tetris. I’m sure if you’ve played the app enough, you can mimic some of the set-ups you’ve seen there.

There are four birds and eight pigs that come with the set. Each of the birds has a hole in the bottom that you place on the peg on the launcher (it looks similar to a sling shot). You hold the base of the launcher with one hand and pull down the lever with the other, then let go. The launcher sends the bird flying right at the AT-AT and those jerky pigs! It’s REALLY satisfying to knock down a bunch of blocks and see the pigs fly. Bonus: If you miss, the pigs don’t make a peep!

Launching things is one of Jack’s favorite past-times these days, so this game had his interest right away. He didn’t seem to have any complaints, although it took him a few tries to figure out how to aim the launcher and determine the necessary distance for his target. Once he got the hang of it, he didn’t want to stop.

I could see older kids getting bored with this ‘game’ somewhat quickly, though – it doesn’t have any rules so it’s more of a toy than a game. Also some may be bothered by the fact that it takes much longer to set up the blocks than it does to knock them down. Jack thinks setting up the blocks is part of the fun, though.

Side note: At a $40 retail value, I would have loved to see this game come with a carrying case because once you assemble the head of the AT-AT, it won’t fit back in the box it came in. If you have babies or toddlers in the house, you’ll want to keep the pig and bird figures away from them as they may present a choking hazard.

Do you live in the U.S. and want to win the AT-AT Attack Battle Game and have your own Hasbro GameNight? Entries will be accepted through May 4th. Modes of entry:

Mandatory:

Tweet about this post OR share it on Facebook or Google+ (leave a comment with your tweet URL or Facebook/Google+ info) – 1 entry

Additional Entries:

Like Ewokmama on Facebook (leave comment letting me know) – 1 entry
Like Hasbro on Facebook or follow them on Twitter (leave comment letting me know) – 1 entry
Comment and tell me what your family’s favorite game is – 1 entry

Good luck and May the Fourth be with you!

***

Disclosure: I was provided with the above-referenced product in order to provide my review but am receiving no compensation for this post. All opinions expressed here are my own. For more information on my reviews, please see my disclosure page and my summary of sponsored content.

Filed Under: Gear, Reviews, Shopping Tagged With: at-at attack battle game, family game night, giveaway, hasbro, kids, Photos, product review, star wars, toys 16 Comments

It’s Not About You

May 1, 2013 By Ewokmama

Six-year-olds are jerks.

Did you know that?

We’ve been struggling for weeks and weeks with all manner of things with Jack. Finally I went back to the parenting bible I had browsed a year ago – Your Six-Year-Old by Ames & Ilg – and everything became clear. I’m not failing and cancer isn’t stealing Jack’s youth and soul. He’s acting like a jerk because he’s six!

I don’t know why this surprised me. I’ve experienced similar revelations about other frustrating ages and stages. And as each year passes I revise my opinion that the age we just said goodbye to was the worst. Because seriously, kids only get more complicated with age!

But six…I really can’t imagine much worse. At least it’s well known (possibly because we remember them better) that the teen years suck. I remember enough of my teen years to know that I was a royal asshole and nothing my mom could do would have changed that fact – it was like I was implanted with a rage generator. I do not, however, remember much about age six so I just assumed it was mostly shiny and happy. I remember loving school, after all!

My memory is obviously faulty.

It’s always been amazing to watch Jack’s mind work, but now it’s getting scary. He understands – and correctly uses – sarcasm. He imagines up new species and describes their evolution – and it sounds plausible (and sometimes it’s a real thing that he thought he made up!). He states facts about science that *I* have to look up. His mind is getting sharper while mine is slowing down.

He is getting smarter than me, people!

He doesn’t know that, though. He’s still under the impression that adults know everything (although he argues anyway) and he doesn’t want to be an adult quite yet because he’s intimidated by how much it seems he has to learn first. Still, he wants to be important and he wants to be heard. He’s just unsure whether that is a function of age or something else. The uncertainly and anxiety have given him a raging case of “short man syndrome.” And the best person to take that shit out on?

MOM.

At least in our family it’s that way. Sure, Jack is a jerk to his other parents, too, but I seem to draw most of his ire. Maybe it’s because I’m the reminder of how much he has yet to learn. Maybe it’s because he feels safe and secure with me, thus he can act like a complete asshat and know that I will still love him 150%. Or perhaps it’s just a function of the mother-son relationship. I don’t really know.

In any case, I now know that it’s not about me.

And now I’m telling you all, too, so you don’t agonize like I have been: it’s not about you.

You’re welcome.

[Jack is seven soon. Please tell me the madness stops...]

Filed Under: Babyman, Parenting 101 Tagged With: 6 years old, child development, growing up, motherhood, parenthood, parenting, tantrums 3 Comments

A Plant In A Boot Saves The Day

April 26, 2013 By Ewokmama

Jack has these meltdowns sometimes. He gets so agitated and upset that he starts making all kinds of noises – growling and moaning and seething. He kicks and hits things and looks wild-eyed. He rocks and flails. He is SO UPSET and his whole body shows it. He radiates stress.

When he was a toddler, it wasn’t that big of a deal. It sucked, but it was usually in connection with being overtired and overstimulated. The best way to handle it was to let him go at it in a darkened room. He was smaller and less destructive then.

Waiting it out is harder these days. He can cause real damage to himself and the stuff around him. The dark room doesn’t seem to penetrate the haze and he gets even more upset if we try to hold and hug him.

So last night when Jack went into his tailspin (because I had demonstrated to him why I didn’t like to be climbed on), I was at a loss. He didn’t want to be held or massaged or even talked to. I tried anyway, but he was completely out of control of his own faculties and I had to just get out of the way lest I get kicked in the face. When I reached the point where I just wanted to yell at him to STOP IT STOP IT STOP IT, I realized I needed to leave the room.

I traded places with David and he wasn’t much more successful than I was. Instead of Jack calming down, the tension kept building. David tried to get him to think of happier things but that just seemed to piss him off more. Finally, David passed the torch back to me and left the room.

A few minutes later he came back, this time with one of Jack’s plants. He had recently planted some Dragon Tongue beans and the sprouts are shooting up fast. Jack started to calm when he saw the sprout, and then he had an idea. He asked for a boot and David complied. Then Jack created an ode to WALL-E:

This helped immensely! You can’t help but smile at a plant in a boot, right?

I then offered to read one more chapter from The Strange Case of Origami Yoda (<-sponsored) so that Jack had a bit more time to wind down and all was then well with the world.

But who would have predicted that a plant in a boot would do the trick? What will the solution be next time??

Filed Under: Parenting 101, Photos Tagged With: 6 years old, kids, meltdowns, parenting, tantrums, wall-e 4 Comments

Better Safe Than Sorry

April 17, 2013 By Ewokmama

Jack has missed a ton of school lately. So it goes for the kid with Leukemia, right?

The week before last, which was his Spring Break, Jack spiked a slight fever and was diagnosed with an ear infection and ruptured eardrum. This happened the day before we were all due to fly to Maryland to help out my sister’s family with their new baby. Jack ended up staying behind with his dad and step-mom while David and I flew out to Maryland. We were heartbroken that Jack couldn’t come with us. It felt wrong to go without him but ultimately we figured out we wouldn’t likely be able to all go if we postponed anyway. And babies are only new for so long!

Jack’s ANC (the measurement of his immune system’s ability to fight off infection) was on a steady decline due to the infection. He was borderline neutropenic (551 – the neutropenic threshold is an ANC of 500) on Wednesday and very low energy with sweats, so I made a judgment call to keep him home.

So he missed most of last week and he’s only been to school one day this week. He’s finished with his antibiotics and ear drops but on various days has woken up complaining of aches and pains or, on Monday, feeling “like I have disgusting liquid going up and down my spine.” I have no idea what that means but it sounds crummy!

He had his monthly clinic appointment on Monday afternoon; he had an exam, a chemo infusion and blood drawn for labs. His ANC had rallied to over 1,000 and the doctor confirmed that his ear was healing. Yay!

Yesterday he went to school, but he’s out again today due to stomach pain, an earache (in the other ear!) and a “watery throat feeling.” (Can you imagine calling into work with that excuse?) It seems he’s sickly more often now, despite having come through last year with flying colors. Perhaps it’s the accumulation of over a year of treatment?

Jack usually doesn’t ask to stay home; instead, I’ll overhear some “ow”s or see him clutching his side or notice that he is getting overly frustrated about something small like putting his arm through the sleeve of his jacket. Then I ask him what’s going on and it’s like pulling teeth to get that info out of him, particularly if it’s anything related to the bathroom – he is so incredibly embarrassed to talk about that. In fact, he asks me to forget it was even mentioned! So I assess his symptoms and determine if there are any medicines he can take – tylenol, claritin, tums, etc… Sometimes, like today, I ask if he wants to try to go to school and see if the medicines kick in and he feels better (sometimes distraction is the key!). In the past we’ve tried just taking him to school but a couple times ended up turning around halfway there anyway so that he could go home and throw up… He rarely has fevers so there is not a very clear indicator of whether he should stay home.

Even more confusing is the fact that Jack is like the opposite of The Boy Who Cried Wolf. Hell, he barely mentioned his ear bothering him before he was diagnosed with a ruptured eardrum! The kid seems to have a high tolerance for pain. (I’m pretty sure he gets that from me. The day I got a concussion and still considered whether I could make it to work comes to mind…)

Sometimes Jack stays home and feels better within an hour or two. Most of the time he’s mildly ill and just needs extra rest. Rarely does he actually have an actual illness that requires quarantine. So it’s fairly often that I struggle with the idea that we’re jumping the gun on keeping him home.

When your kid has a life-threatening illness, though, you pretty much live and breathe the motto “better safe than sorry.”

Luckily, as noted in the recent 504 meeting with the school, he’s doing great at keeping up in school. He’s getting 100% on his tests and assignments. The biggest problem with him missing school is the stress it causes him – despite how well he’s doing, he worries a lot about falling behind. He’s such a worrywart!

Despite feeling under the weather, Jack worked on some schoolwork his teacher sent home and finished four pages at home today. At the very least, his willingness to do the schoolwork reassures me that he’s not trying to play hooky in some elaborate reverse psychology scheme. Hopefully I’ll have a few more years (and we’ll have cancer out of the way!) before he pulls something like that.

Filed Under: Cancer, Cancer Mom, Illness, Parenting 101, School Tagged With: cancer, cancer mom, growing up, Health, Illness, immune system, infection risk, leukemia, neutropenia, school, staying home from school, weakened immune system 2 Comments

Leukemia, Section 504, and Education Planning

April 11, 2013 By Ewokmama

I met with Jack’s first grade teacher, the school principal, and the district nurse yesterday to discuss a 504 assessment for Jack. If you aren’t familiar, Section 504 is part of the Rehabilitation Act that protects students with disabilities. Since Leukemia is a chronic, life-threatening illness that impacts his learning, working, and performance of manual tasks, he qualifies as disabled. Once a 504 assessment is made and it’s determined that a student qualifies, an IEP (Individualized Education Plan) is typically created to address the student’s needs in school.

Obviously, it’s taken me a while to get in gear and ask for this. The irony of requesting this assessment now is that Jack has caught up to his peers in most areas of concern since he started back to school in October. With that said, he is failing Physical Education, missing quite a bit of school, and his self-esteem and confidence are low. His stress level is difficult to manage even on a good day.

I was nervous going into the meeting. Not only am I still getting used to being an advocate for another person – a person whose needs have changed dramatically in the last year – but I’ve also read complaints about parents’ frustrating experiences with schools when enacting 504. I worried that I might get pushback from the school because Jack really is performing well. Thankfully, the school officials were all very understanding. I feel like we are off to a good start in helping to get Jack some relief.

In our hour-long meeting, I summarized Jack’s medication and treatment routines, explained how his health and side effects of treatment can impact him on any given day, and shared my concerns related to the challenges these things present to his education. Mainly it boils down to the fact that Jack puts forth so much additional effort in order to meet standards because of these challenges that it has compromised his emotional health and feelings about school.

We recorded the following challenges that impact Jack’s ability to learn:

Sensitivity to temperature changes
Bone and joint pain, soreness
Catheter in chest
Lowered muscle definition
Difficulty with coordination
Delayed reflexes
Shortness of breath
Dizziness
Weakness/fatigue
Attention/focus impacted by chemo treatment levels
Monthly steroid impacts mood and ability to cope with expectations
Medication taken at school, can get headache near time of receipt

Based on these things, the school will make accommodations for him to aid his learning in the following ways:

Additional time to complete assessments and assignments
Extra opportunities to repeat and explain information and directions
Extra time to respond to information and questions
Teacher will provide parents with work when child can’t attend school (to be completed if he feels well enough)
PE accommodations, such as alternate responsibilities/tasks
Teacher will remind Jack to eat and take snacks to accommodate his lack of appetite and slowness/distractibility when eating

This plan is a bit vague, but it should be enough to give the teachers the ability to customize the help they give Jack without making it a big production in front of his peers. I’m hoping that the additional understanding of Jack’s health issues from his teacher’s will take some of the pressure off of him and maybe that will even result in less self-injury! That’s my hope anyway.

I felt so relieved when I walked out of that office! I alternately wanted to cry and giggle hysterically. I didn’t have to push for any of this and it felt like I was part of a team that has Jack’s best interests at heart. There are people who have access to things that I don’t and they are going to help my child – we aren’t alone and we don’t have to spend tons of time blindly fumbling around the educational system.

Instead we can spend our time blindly fumbling our way through the parenting of our chronically ill kid! It may be a small victory but I will take it!

Filed Under: Cancer, Cancer Mom, Issues, Parenting 101, School Tagged With: 6 years old, allies in education, cancer, cancer mom, child development, childhood cancer, disabled students, education, emotional health, growing up, kids, leukemia, life, living with cancer, mental health, motherhood, parenthood, parenting, school, section 504 2 Comments

Things I Wish He Could Know

March 27, 2013 By Ewokmama

This morning on the way to school, Jack expressed frustration over his interactions with the other kids at recess. He has a really good buddy that he plays with, but he complains that the boy wastes playtime by spending too much time planning (and thus little time actually DOING). I tried to give Jack tips on how he could negotiate more playtime with his friend, including the idea that he suggest they take turns selecting and planning their play. He then said if he were to take that kind of stance, he was afraid he would be acting “too grown up.” And the other kids would know he wasn’t grown up!

I was a little taken aback. After all, when I was a kid I wanted to be grown up! Grown ups had the power, man. And, well, I was the big sister so I was used to being in charge and leading a group. Jack’s only done this by accident – he avoids being in charge and then gets upset when things don’t go his way.

I had a hard time explaining that if he wants to affect how things are done, he needs to act a little grown up sometimes. He doesn’t need to wait for someone to ask if he wants to take a turn – he needs to speak up and let people know.

He has no idea that if he just took the lead, others would follow. He has an innate ability to be a leader but he doesn’t realize it at all – which just makes him more appealing as a leader.

He ended up getting frustrated and upset with me. His reaction to my ‘help’ made me bite my tongue and reflect on the aspect of my personality that he seems to have inherited – a stubborn refusal to listen to others who tell you what you *should* do. (My little sister has this trait, as well. Maybe it runs in the family!)

Why should I do it that way? Why can’t I do it my way? There can’t be only one right way! I’m going to figure out a way that works for me!

And so, I had to acknowledge that my my kid is reaching a point where he is not looking to me for all of the answers. He is more solidly his own little person and he wants to think for himself and learn how things work instead of being told. And his intellect is at a place where he can piece a lot of things out for himself. I need to step back and let him do that. The more I try to ‘help,’ the more he will do the opposite of what I suggest.

Just like me.

It’s a little sad. There are so many things I’ve learned that I wish I could just TELL HIM. I wish I could save him the time of figuring these things out. Maybe he’d get where he needs (or wants) to be more quickly! Maybe he could have greater success than me.

But since I can’t tell him (even if he listens, he’ll either think I’m full of BS or he’ll become a young tyrant) I figured I’d write it here – the life lessons I’ve learned (and yet do very little with):

Confidence will get you (almost) anywhere – even fake confidence. If you act like you know what you’re doing, people will usually believe you!
Fear of an obstacle is usually the biggest thing holding you back – not the obstacle itself.
You can usually get away with winging it – everyone else is making it up as they go along, too.
Most people are too busy worrying about themselves to notice that you’re worrying, too. And those who are overly concerned with what you’re up to are going to run into their own problems pretty quickly.
It’s better to try and fail than it is to live with the regret of having never even made the attempt. (You might have succeeded.)
It’s pretty miraculous that people manage to stay alive. Seriously.
You’ll be amazed by how often success is accidental.
There are a lot of people out there who will want to hold you back for no reason at all. Don’t be one of them.

I know there are more and they will come to me (probably while I’m driving or trying to go to sleep), but this is a good start.

What do you think about my list? What wisdom would you impart to your child if you could?

Filed Under: Growing Up, Parenting 101, School 2 Comments

The Great Shoe Struggle Of ’13

March 22, 2013 By Ewokmama

Last week I threw my ~~hands in the air and waved them around like I just don’t care~~ whole self into the challenge of finding shoes for Jack. We did end up finding a pair at Payless. They are Airwalks (really) and look like this:

They only had this single pair in a size 13. 13 is the cap on “little kids” sizes or something. And then they go to 1 again. And have different styles and such. Or something. I’m no expert in kids shoes. Or adult shoes, for that matter. I own a bunch of pairs of Clarks and a couple pairs of Roxy and that’s it. (I’m picky, too.)

Anyway, these shoes aren’t available in big kids sizes. And they are girl shoes – not that I care but another kid at school did make fun of Jack for wearing girls shoes. Kids are jerks.

Summer is coming and we live in a hotter climate that we used to. It’s likely to be 90 degrees regularly this summer. Not to mention Jack’s feet are going to grow. And a single pair of shoes gets worn out QUICKLY. He needs more shoes!

So, like I said, I threw myself into the challenge. I ordered nine pairs of shoes from Zappos (since they do free shipping and returns) in a variety of brands and styles. They all looked lightweight and comfy. They arrived yesterday and Jack tried them all on and in a matter of 15 minutes or so they were all deemed AWFUL.

I have illustrated the reasons below:

My kid can’t even wear Crocs, you guys! Or Keen, Lacoste, See Kai Run, Sanuk, Cienta, or Morgan & Milo. He really wanted those brown Crocs to work – he loved the yeti on them. He chanted “please oh please oh please oh please” while trying them on. Still, no luck.

And yeah, I tried to get him to try them without socks. He refuses to not wear socks. He wears socks to bed! Feet must have socks!

So I packed up over $400 worth of shoes into a box, and back to Zappos they shall go. Thank goodness for a generous return policy!

** This post is not sponsored but I would totally accept money to ease my emotional pain.

Filed Under: Gear, Parenting 101, Shopping Tagged With: 6 years old, growing up, Health, kids, parenthood, Photos, sensory integration, shoes, shoes are uncomfortable, Shopping, tactile defensiveness, tactile sensitivity 5 Comments

Cancer Creeps In

March 19, 2013 By Ewokmama

“In two years and one week we won’t have a million little spoons to wash,” David said to me this weekend. We use two to three spoons each day to give Jack his medication. We’re both looking forward to going through less spoons.

“I can’t lay down like normal because my back hurts. I have cancer and had a procedure today.”

I took Jack to the dentist yesterday, which was also a procedure day. I try to clump his appointments together so that I don’t miss as much work AND so that we can get the crappy stuff over with all at once. Unfortunately I failed to think this through entirely when booking the dentist appointment. Jack’s lower back was sore from the lumbar puncture he had in the morning, so laying down in a dentist’s chair was uncomfortable. I folded up my sweater as cushioning for his lower back.

We made special requests. We do this here and there to ease some of the things Jack goes through. Do you have toothpaste other than mint? Can you put a movie on other than Tangled (it stresses him out)?

Jack yowled the whole time he was getting his teeth cleaned. He went on and on about how awful the toothpaste (first ‘chocolate,’ then watermelon) tasted. I felt sorry for the other patients. I hoped Jack’s yowling didn’t scare them. I held Jack’s hand and asked him to try to be quieter. But when you’re a kid who chews chemo every day, your tolerance for other bad tasting things is lowered. What can you do?

“I think Bri doesn’t play with me anymore because she thinks my Broviac is gross,” Jack told me recently. I asked if the other kids at school knew about his Broviac and he said yes – he had showed them. Some kids are still mistakenly under the impression the tube comes out of his stomach and find that frightening.

Cancer is on my mind all the time. I wish it wasn’t that way but it pops up where I least expect it. We went for a playdate this weekend and I had planned to avoid the topic. But it’s pretty hard NOT to talk about something that permeates every part of your life. Still, I don’t want to be the person who brings down every conversation. Thankfully, I discovered that our hosts were familiar with the disease. The mom broached the topic and I followed suit.

She nodded sagely when I confessed that I feel like I can no longer chime in on a Facebook status when someone’s child is ill, particularly if the symptoms resemble those that Jack had when he was diagnosed. It’s as if I am the bringer of doom and gloom. I allow that little whisper of “it could be serious” to get through. I give credence to a parent’s worry for their child. People stop talking once I have weighed in.

It’s similar to what happened when I was getting a divorce. Suddenly I could see the worry in the eyes of the couples around me – ‘If they couldn’t make it work, what does that mean for us?’

If her child can get a life-threatening disease, can mine?

Everyone knows the answer. It’s harder to ignore the possibility when the evidence of it happening right out of the blue, with no warning at all, is standing right next to you.

Today I mailed out the request for a 504 assessment to Jack’s school district office. It feels strange. Jack is pretty gifted in many areas. He’s also fierce and determined; he’s caught up well with his peers after missing over six months of school. He can do the homework and he is getting 100% on math tests now.

But here I am asking for him to be considered disabled. It feels wrong.

This is the reason I’ve delayed broaching the topic with the school before now. My son, even with Leukemia, has so much compared to so many others. How can I ask for more? His performance would be normal for so many other kids. Most people can’t tell he has problems at all. Isn’t that good enough?

But it’s not about how much we have or how much others don’t. Jack is doing better than expected, but he is struggling a lot in order to do so. Yes, he’s completing his 12-14 pages of homework each week, but it takes him so much longer than it should and it wears on him. He is tired and moody and often feels like he isn’t living (although he uses different words to say so). It’s hard to learn and retain information when you are using up all your energy just to get through the work.

Hell, if I’m exhausted every day, how must he feel? His worries and his challenges are a bit different, but they are so much bigger than he is. He has too much to worry about for such a small guy.

For the last year I’ve been thinking we’ll get used to all this and life will go back to the way it was. I thought we’d eventually make ourselves believe that everything will be just as it would have been otherwise…that all the worry would ebb away. I’ve been waiting for the time when I could worry less about what is going on in Jack’s body and return to thinking about more frivolous things – or even important things like my relationships with friends and family.

But I’m starting to get it. We aren’t going to go back. We jumped the track and now find ourselves somewhere completely different. We have to move forward. I can’t care about many of the things I used to care about – I don’t have the capacity and I’m in a completely different place.

So, to my friends and family and even people I’ve yet to meet: I’m sorry. I know cancer is unpleasant and it might seem like I’m “all cancer all the time” now. I just can’t help it and I hope you’ll forgive me for that. I am still finding my way.

Cancer creeps into everything.

Filed Under: Cancer, Cancer Mom, Parenting 101 Tagged With: 504 assessment, cancer, cancer mom, childhood cancer, chronic illness, Family, friends, kids, leukemia, life, life after cancer, living with cancer, parenthood, special needs 10 Comments

Progress In Inches

March 14, 2013 By Ewokmama

We’ve made some progress this week! Maybe things are getting better!

(I know – I should shoot myself now for saying that. It will all go to hell now that I’ve made a positive parenting-related comment!)

Jack saw his therapist on Monday. Together they brainstormed ideas for how to deal with anger (besides hurting himself). Jack used one of these methods last night – he drew a picture of the thing that had angered him, then ripped it up and taped it back together in a funky pattern. This seemed to give him a bit more control over the situation and he was happy that he “showed it.” I was proud of him!

He has seemed to be more open to talking about difficult subjects since Monday. Back when Jack was diagnosed, we were given an activity book that is supposed to help kids explore their emotions about their chronic illness. Jack has mostly refused to talk about cancer at all before now. But last night I said I had a neat workbook that I hoped he would try and suggested that it would be helpful with some of the frustration he’s been feeling. I sat next to him and flipped through the book, summarizing the different activities. When I mentioned “Things That Make Me Feel Alone,” Jack said he felt alone when his dad takes him to the redwoods and also on an empty street. He didn’t want to draw or write that down, though. I moved on and when I got to the one entitled “Things I Hate About The Hospital And Clinic,” he grabbed the packet and took off to the living room where his colored pencils were located. He drew a syringe, an elevator, a dressing change, and he wrote down ‘procedures’ because “I don’t know what they look like since I’m asleep.”

It was interesting that in thinking about it, he said there are several things that he doesn’t mind at all – i.e. the waiting, the examinations, the infusions. I made sure to point that out to him – it’s not all horrible even if it’s boring!

He went on to another page and drew the reactions of people around him when he was diagnosed. His picture showed indifference, the one of his parents showed worry, the doctor looked confident (“like ‘I know how to fix this!’”), and new people he met were nervous.

WOW. I was so relieved that he was actually expressing these things! Jack is a total people-pleaser and doesn’t want to talk about things that aren’t happy or cool because he doesn’t want anyone to be upset. It was part of the reason for the delay in realizing he had cancer – he won’t complain about something until it is unbearable. And even when he does complain, it’s understated – “my throat feels weird” becomes puke two minutes later. “My legs are floppy” means his legs are feeling weak and unsteady and he can’t walk well. The things going on with his body are generally the last thing on his mind (which can be good and bad).

We’ve been encouraging him since he was admitted to the hospital to complain more. I know that sounds strange! But his physicians would ask if he was having diarrhea or headaches or cloudy urine or tingling in his hands and we would have no idea. He’s king of “I’m fine!” But seriously, kid, we need to know if anything at all is bugging you because it can be a sign of something big!

Anyway, he’s getting better. He definitely complains more, although often still in a roundabout way. It’s weird when you have to suggest to your kid that he needs to eat or maybe he needs some allergy or headache medicine! And while I know what to look for to anticipate these things (hm, he’s very intent on coloring that dragon even though it’s lunch time and he is surely hungry!), others don’t and I’m not there all the time.

One thing he definitely hasn’t had trouble complaining about is clothing! It’s been an ongoing battle to find comfortable things for him and sometimes we lose the battle. However, I took him to buy (a third pair of) new shoes two nights ago and after trying nearly every pair in the store on, he was absolutely sure that some fur lined boots were The Ones. He freaking loves them. Yay! Now to find more pairs because those are not gonna last!

I’ve ordered socks without seams (they have them on Amazon!) and socks of various lengths and good quality in the hopes that we can get past his sock issue (also – he doesn’t feel right NOT wearing socks). And yesterday I ordered NINE pairs of shoes from Zappos that looked comfortable – some of which are fur-lined and others that are just fairly trim in design. I hope something works. Summer is coming and he’s not going to be able to wear those fur-lined boots forever. (I’ve tapped out my local resources for shoes – at least as far as how much I can afford!)

I’ve spent ungodly amounts of money on clothing for Jack this year. There should be a special charity for soft, comfortable clothing for kids with cancer!

David took Jack out for ice cream yesterday after he got 10 lilypads colored in on his behavior chart (he gets one each time he finishes homework, brushes his teeth without dawdling, and remembers to not maul the cat). We’re trying to reinforce the fact that he’s good and does good things because he’s WAY too hard on himself. The therapist said we should avoid charts with sad faces since he already focuses on his ‘bad’ behavior so much. Anyway, this seems to be working.

It’s a weird balancing act to parent such a sensitive kid. It’s nearly impossible to discipline him because he already punishes himself more than necessary! I’m not exactly a subtle person so it’s been challenging to dial back my reactions to some of the things he does – even a stern look will have him in tears in no time flat! Thank goodness I’m not more authoritarian – that would crush him!

The insight shared by you all has helped me, as well. I’ve learned that six year olds are very particular and kinda jerky. I’m trying to remember that his behavior is usually not a reflection of what I’m doing (or not doing) – it’s more about what he is feeling or trying not to feel. I can help guide him but I can’t fight all these battles for him.

So…progress for him AND me. I’ll take it!

Filed Under: Babyman, Cancer, Cancer Mom, Gear, Getting my groove back, Growing Up, Parenting 101, Shopping Tagged With: 6 years old, cancer, cancer mom, child development, coping with stress, discipline, discomfort, expressing emotionss, leukemia, life, mental health, motherhood, parenthood, parenting, sensory issues 3 Comments