Anger Turned Inward

Recently Jack told David that his life was perfect. David looked at him incredulously and asked, “What about the cancer?”

Jack replied, “Cancer doesn’t bother me much.”

Yeah…okay.

Tuesday morning I found Jack sitting in a corner of his room by himself when he was supposed to be putting his shoes on. He was just sitting there. When I asked him what was going on, he told me he felt weird and sad and didn’t know why.

Are you sad because you don’t feel good?
Are you sad because you miss your dad and brother?
Are you tired and that’s making you sad?
Is there something happening at school to make you sad?

None of those, he said. He just didn’t know. He was sad and teary and had no energy for school.

I pulled him into my lap and cuddled with him. I told him I felt that way sometimes, too. We decided to stay home and snuggle under the covers and watch a movie together. We would have a mental health day.

He went to school on Wednesday, and then Thursday came around. Upon waking, he complained that his back hurt, he was shivery, and he had no energy. We went about our normal morning routine and I hoped he would rally and be able to go to school. But he did not. Instead his stomach and chest started hurting.

I decided to give him some time and then I told him I was going to take him to school but that if he wasn’t feeling better by lunch time, I would pick him up. He buried his head in the couch and started hitting it. He growled. I told him I would let him work it out and get his shoes on while I brushed my teeth. But when I came back, he was throwing things and holding up a screwdriver by his face and pulling on his hair. I told him he wasn’t allowed to hurt himself, and he stomped off to his bedroom and slammed the door behind him.

After a bit he emerged again but was still growling and stomping and throwing things about. So I tried to talk to him.

You seem really upset. I bet you’re mad that you feel sick all the time. You probably hate taking so many pills. And you don’t have any control over those pills.

“The pills feel like poison,” he replied. He had quieted a bit and was listening to me, albeit with a frown in place.

I bet that makes you mad that you have to take medicine and that medicine doesn’t even make you feel good – it just makes you feel worse!

Jack nodded.

Medicine is no fun. And you know what, cancer sucks. I hate cancer. It’s not fair that you have to deal with cancer, Jack. You didn’t do anything to deserve cancer. Cancer is a jerk and it shouldn’t be allowed!

“Yeah, I hate cancer, too! It makes me want to break things!”

Well, you can’t break things, but what about ripping things? I’m sure we have scratch paper you can rip up. Sometimes ripping things up makes me feel better. Oooh, and what if you drew cancer and THEN ripped it up?!

That got some life back into him. We headed to the office and I found some scratch paper and handed it over to him. I then gave him some space.

He drew two pictures, each time coming to find me and show me how he could rip cancer to shreds. He shouted “murder” at the pieces and then stomped on them. A bit of a smile came onto his face after destroying the second drawing. I asked if he would draw one for me to rip up, too. He went right to work and came back with an illustration of a body labeled cancer and a dotted line across its throat. He pointed and said, “This is where you can rip its head off.”

I ripped its head off and then kept on ripping while yelling at it, “I hate you, cancer. How dare you hurt my son! You leave Jack alone! No one wants you here! You suck and we hate you! Don’t ever come back!”

And then I stomped on the little pieces for good measure while a cackle bubbled up in Jack’s throat. I felt so much relief to hear that laugh. My boy was back, if just for a bit. We had broken through the cloud that engulfed him.

He kept drawing and I made a phone call to see if I could move up the initial appointment with the new therapist. Thankfully, a spot had opened up in her schedule for that evening.

I then got a text from Jack’s aunt asking if some time with cousins might cheer Jack up. Thank you thank you thank you, I thought. We ate lunch and headed straight there. His aunt and I drank tea and chatted while Jack and his cousin Isha closeted themselves in the office and drew pictures together.

Later, he put up a fight about leaving and got angry all over again but we headed to the therapist’s office anyway. After an hour with her, he was almost back to his old self. I don’t know the details about their session, but Jack did draw something for the therapist and also said, “I told her about my sad feelings.” He also said he’d love to come back. So, I’ll count that as a good session indeed.

Jack asked to watch an episode of Cupcake Wars with me when we got home. We snuggled up and watched a British-themed episode. Jack kept petting me the whole time and we hugged over and over.

It was a terribly rough day in an already difficult week, but at the end it felt like we’d made progress. Maybe Jack’s grief has moved on from denial and he is now allowing the anger to come out. Maybe next time he talks about cancer, he’ll admit that it sucks instead of pretending that his life is perfect.

Even if he doesn’t, we have one picture leftover from yesterday to mark the occasion. We may have to frame it.

CancersGrave

I Can’t Write About Spain

I want to write about how amazing last week’s trip to Spain was. Because truly, it was wonderful. I needed that change of scenery. I needed to get away from the stress of day-to-day life. David and I badly needed that time together to be a couple and not caregivers. We got that in Spain and it was lovely. It was so very worth it!

Some day, we’ll go back.

We had a whole week abroad free of worry (for the most part). And I wish I could say that I feel refreshed after that change of scenery, but I don’t. I know I should feel happy – my soul renewed and inspired – and I should be ready to tackle everything all over again. I feel conflicted instead of happy. Less than a day back and the blanket of depression I’d tried to leave behind me when I got on the plane to Madrid enveloped me all over again. Every time I’m asked how Spain was, I say, “it was…good.”

Spain was awesome.

On the other hand, I was not awesome; therefore Spain was…a mixed bag.

I just want to forget the less wonderful things, but I can’t. I’m stuck.

I spent a lot of the week battling a nasty cold that seems to have turned into a sinus infection. I dealt with insomnia (which hit at different times than my husband’s insomnia). Half the time I longed for the comfort of my own bed and an ability to recover from my cold without missing out on a whole world outside the hotel. I was so overwhelmed by many of the wondrous things we saw and yet I lacked interest in other things that I usually would enjoy. I had very little appetite to take full advantage of the foods and wines I had been looking forward to trying. I was so out of it by the end of the trip that I accidentally forgot a painting we had bought in Seville in the hotel lobby before we left on a train back to Madrid. Then on our last night in Spain, David and I argued, my debit card was eaten by an ATM, and I woke up in the middle of the night with a debilitating migraine that had David looking up the cost of medical care for tourists.

There was a lot of bad. It wasn’t all bad and in fact I felt mostly relaxed while in Spain, but there was enough bad to reinforce the feeling that the universe continues to punish me for something that I’m not even aware of doing.

That’s ridiculous, I know. This is life and there are good things and bad things and if I could just remember to think more about those good things than the bad things, I could be a much happier person.

I want to focus on the good. I want to write pages and pages about the magical town of Sevilla and the sheer awesomeness of the architectural details we saw everywhere in Spain. I want to offer recommendations for places to try for tapas and let you know that Spanish in Spain is different than Mexican Spanish. I have lists to share – of American things we’d miss if we ever moved to Spain and things that Spain does better than America. I have nearly four hundred pictures to show off, many of which only offer hints of how mind-blowing everything was and really need some narration!

But I’m depressed. I’m still sick and I had another migraine last night. And it’s December, which has traditionally been a terribly hard month for me anyway.

So instead of writing about Spain, I wrote this.

I’m sorry.

Hasta Luego

In less than three weeks, David and I are taking Jack to school, boarding our dog, and jumping onto a plane headed for Madrid, Spain.

No, we can’t afford it. It will increase the already sizable amount of credit card debt we carry. But we are going anyway.

Jack will spend Thanksgiving week with his dad (who gets holidays on odd years) and my employer has issued an office-wide mandatory vacation for that week. So I have a week where I can’t work if I wanted to and I won’t have my kid. A whole week!

And lord knows we need a vacation! David and I haven’t had a true vacation together since our honeymoon three years ago. We are lucky if we get to spend an hour together each night, and usually that time is spent talking about Jack’s health. We are tired and depressed and even though we see each other daily, we miss one another.

So yeah, we’re leaving the country and getting as far away from our day-to-day troubles as we can. We are going to dedicate that week to taking care of ourselves and renewing our relationship. It’s all about us! We can wake up when we want to and go wherever our mood dictates.

I am excited and so very hopeful. I hope that the radical change in location will help us set aside our daily stresses and replace it with awe over a different country and culture. I hope we can stop talking about Jack’s health for a while and instead talk more about how fortunate we are to have this wonderful family. I hope we can reconnect and enjoy our love. Maybe we can even plan for the future.

Mostly, I hope we will come back feeling refreshed and energized and better able to handle the challenges that come at us constantly.Jack has a year and a half of treatment left. Hopefully this break will fortify us enough to make it through.

***

Hey, look! I’m participating in NaBloPoMo! You can, too!

Just Write [108]: In Charge

He walked into the bedroom where I was laying alone in the dark, hiding. A mountain of wadded up tissue was on my nightstand and my phone was in my hand. New tears popped into my already puffy eyes, even though I’d already been crying for hours. How could I still have tears left?

“I know I’ve said this before, but you need to ask for help. You need to tell me what you need me to do.”

“I don’t want to be in charge of everything,” I mumbled. I was completely enveloped in self pity.

“You don’t have to be charge of everything,” he replied.

I thought ‘you’re wrong.’

You need to tell me what to do.

That right there means I’m in charge. I have to know what needs to be done and I have to delegate the things I can’t do.

I never wanted to manage another person. Long ago I recognized that counting on other people to do things in my stead is not something I excel at. My childhood didn’t prepare me for that – it prepared me to take care of things myself. And that continued beyond childhood – I’ve made my career as an administrative assistant – someone else’s right hand. I’m the one people depend on, not the other way around.

Of course, being a parent means I am managing someone, albeit in a different way. I am the ultimate authority in my house about what happens with my son. I chose that role and I accept it.

I am not the best boss, but I fulfill my commitment. I’ve helped my son learn and grow and even thrive (despite his illness and my own shortcomings).

But taking care of a special needs child demands more of me than I ever knew was possible. I am not looking to unload the responsibility or shirk my duty. It’s just that sometimes it is exhausting. Because regardless of how many parents Jack has, I am still in charge.

I am in charge because I know more about him and his medical condition than any of his other parents – by choice. I am in charge because the doctors look to me first for information. I am in charge because I have the job that supplies the insurance. I am in charge because I have primary custody – again, by choice.

I am in charge because, in so many instances, I am the ONLY person Jack lets be in charge of things related to him.

I make his doctor appointments. I sort his pills every week and refill his prescriptions. I call the clinic…over and over. I refresh the test results page and I calculate his ANC. I arrange for childcare or changes to his schedule with his dad and step-mom. I know which foods he eats and which he isn’t into anymore. I know when he’s breathing funny or he is on the brink of a meltdown. I’ve documented so much of his life – on paper and in my mind – and I am the default caregiver because of it.

I could ask for help with all of those things, but taking care of Jack is so ingrained in me that it doesn’t even occur to me to ask for help. Why would I? It’s MY JOB. I’m his mother.

No one can lighten that load – I can delegate every parenting-related task I have, and I will still feel the weight of each responsibility because I am in charge no matter what anyone says.

****

This post was inspired by Heather’s Just Write – an exercise in free writing your ordinary and extraordinary moments.

I Need Peace

For only the second time in three weeks (if I’m remembering correctly – and I may not be!), Jack is at school. It feels like a major accomplishment! Just yesterday he was complaining about abdominal pain and difficulty breathing, but today he made it to school – on time, even!

Oh, happy day!

But – I.am.tired.

It’s hard enough to shut off worry when things are going as planned, but when they aren’t? Oh my goodness! I feel the worry like it’s a ton of bricks on my back and there is no break from carrying the load. I get slower every day, worn down, and dried out. Sleep isn’t restful and my head hurts constantly. Things that usually bring me joy are less satisfying. My tolerance for additional difficulty is NIL.

I was seriously depressed yesterday. On Monday Jack’s labs came back and were just as dismal as they were last week, even though he hadn’t had the antibiotic (that was supposedly causing the low counts) for ten days prior to that. When I called to speak with the case manager about it and ask when we’d get the test back that would tell us if the chemotherapy drug 6mp was the culprit, we discovered that the test hadn’t been done after all.

They forgot.

That freaking test takes a couple WEEKS to get back results so you can imagine how maddening that is. Jack’s been feeling like crap and had low counts for almost two months now and we have only guesses as to why and they FORGOT to take a vial of blood to send in a pretty important test!!!

GAH! It’s maddening!

Yesterday he continued to hunch over a bit while walking due to pain in his lower abdomen and ran out of energy when we ventured out to the Halloween store. I felt helpless. I emailed his doctor pleading for some sort of idea as to how to help Jack…and how to help myself.

If Jack feels better, I can feel better.

Thankfully, Jack is feeling better enough to attend school today and that helps things. It’s risky, but so necessary. I asked him to stay away from sick kids and I am crossing my fingers that he doesn’t catch anything. Hope, hope, hope. He has big ol’ circles under his eyes (9.5 hours of sleep isn’t enough, apparently), but it’s so important for him to see his peers and get to school at least once in a while! And it’s good for me to be at work and do my thing instead of being a hovering worry-wart constantly taking his temperature. Normalcy is important.

So I’m not as depressed as I was yesterday, but I’m still not super chipper. I guess I’ve hit upon a pocket of grief that I’d been storing somewhere inside of me. It started to come out at Type A Conference when I attended the “We Still Blog” session and heard Julia read her post Landing Into a New Life. I wasn’t just in tears, I was holding back sobs. I mumbled something at Julia about what that post did to me and she said, “I wrote that for you” (people like me, I think she meant), which undid the last string holding me together. My grief started to overflow and I couldn’t focus on the keynote following Julia’s reading. I fled the room and headed to the bar for a stiff drink.

Grief and tears leaked out in bits and spurts all night and, thankfully, I was surrounded by amazing women who hugged me and comforted me (those wonderful ladies deserve a post to themselves!) and got me through it. Thank goodness!

The outpouring of my grief caught me by surprise, though, and I guess I just haven’t quite put a lid on it yet. It’s been taking over my thoughts and stifling my words. I’m not sure what to do about it, so I’m just sitting back, letting it run its course, and hoping I come out the other side feeling more peaceful.

I need peace - even if it’s just for a little bit, and even if it doesn’t last.

When Self-Care Comes In Second

Jack is back to school! It’s his second week, in fact. And it’s his fifth day making it to class. Yesterday was picture day and he was told by the photographer that he looked like Harry Potter, which made him very happy.

Antibiotics are done and chemo has restarted. As of Sunday Jack’s ANC was an outstanding 1296! All very good things. Whew, we can breathe again.

Life is back to what is ‘normal’ for us, which means it’s catch up time.

Now that things are moving again and we’ve returned to our regularly scheduled life, fatigue and stress are hitting me hard. I can function like nobody’s business when in the middle of a crisis but as soon as it’s contained, I need to sleep for a month! I wish it wasn’t this way – I wish I had been able to rest more while we sat in the hospital room doing a bunch of nothing. But when I napped, I had nightmares.

So ever since we came home from the hospital, I’ve been caught between needing very badly to get some rest and downtime, and stressing out about that rest getting in the way of catching up on all the things I couldn’t do during that week in the hospital. Mostly that’s a lot of paperwork, bill paying, laundry, and house cleaning. Oh and my job. But there is a big chunk of it that is taking care of myself and also getting time with my husband, things that always seem to get pushed behind everything else.

I’m tired, I’m overwhelmed, and I’m in desperate need of both time alone and time with my husband. And I’m depressed because I can’t see any way around this pile of ickiness.  I just have to go through it.

Family leave should include two parts – the part where you take care of your family, and then the part where you recover from taking care of your family. Where’s the downtime for the caregiver?

I know it’s only a matter of time before I feel like things are okay again. I’ll be able to look on the bright side more readily and I will feel less irritated by things that aren’t going smoothly. Maybe I’ll even be able to blog properly.

Of course, if you hear I’ve run off without a word to anyone, it’s likely I’ve found a very deep hole to hibernate in until the storm in my head has passed. I’ll come out in my own time.

Maybe.

Yet Again, I’m Blogging About Mental Health

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'm Blogging for 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.

Everything Is Against Him

It’s been a hard week. And it’s only Wednesday.

Monday and Tuesday Jack was late to school. This is sadly too common. He is soooooo slow to get anything done and any hurrying I try to do just stresses him out and delays him further. The school office doesn’t blink anymore when we come in late. They also don’t mark his tardies as excused, though.

The biggest issue we’ve been fighting with is clothing. Monday he had trouble with pockets being too bulky. Tuesday it was that the waist of the pants was too loose. Sometimes things don’t feel good on his skin. Or they feel damp (when they are probably just cold). This pair of underwear goes up too high, or this shirt isn’t the one he feels like wearing today.

Today it was all about socks. They bunch up. They don’t fit right. They feel weird when he puts his shoes on. The heel is in the wrong spot. The seam bothers his toes.

His shoes are a whole other story. He wears one pair and the soles are badly worn down. I’ve bought two pairs in the last two weeks and he can’t stand to wear either of them because they are too tight or too uncomfortable. Even though he tried them on at the store and said they fit!

Homework hasn’t been easy. Jack hates to be corrected. We ask him if he’s put forth his best effort and he says no…so then he has to keep trying. And then he says he’s tired. Or he storms off into his room and slams the door and hides because he’s frustrated about having to think. He did this several times last night. I try to get him to focus on doing what he knows first. We can worry about corrections later. But he stumbles over some of the math concepts and gets frustrated when he can’t grasp them quickly.

I don’t doubt he’s tired, honestly. He is difficult to drag out of bed in the mornings (at least, during the school week). He gets to bed much later than I would like because of how long it takes him to eat, and then the hour of waiting time before he can take his pills, and then the dawdling that happens during bed prep time. By the time I get him to bed my evening is gone, too. We’re all tired.

Time is a big problem. He eats slowly and runs out of time to play, which upsets him a lot. At school he hasn’t been finishing his lunch because he’s afraid of running out of time to play. Or sometimes another kid distracts him from eating.

Jack exclaims, “Everything is against me!” or “I never get to have fun!” Then he berates himself – “Ohhhh, why do I waste so much time?!” and smacks himself in the head.

We try to remind him that he has friends and family that aren’t against him. That clothes aren’t out to get him. That he gets to have fun at recess and he gets to watch Scooby Doo and work on various craft projects. We make deals (he’s been a fan of deals in the past) – if he finishes two pages of homework, we can build or color or craft together. We have reward charts for things he needs to focus on – finishing homework, being gentle with the cat, brushing his teeth without dawdling. Various things work for a day or two before they no longer seem to motivate him.

I don’t know how to help Jack. I don’t know how to help myself, either. I feel defeated and so very tired.

Somehow, we need relief.

The Inconsiderate Visitor

I haven’t been doing well. I don’t know exactly what is causing it (out of the many possibilities) but I’m depressed and struggling every day now. I’m worried about everything and when I’m not worried I find it hard to care at all. And I’m always very, very tired.

I think being on guard constantly – just waiting for something else to come up (because my life seems to always have something crazy waiting in the wings) and throw a wrench in the works – has taken its toll. Even small, relatively fixable things have me reeling. I think it’s just that there is always something – whether it’s Jack trying to stab himself in the eye or changes at work or an illness or some nut leaving a garbage bag full of weed trimmings outside our house (yeah – that happened this weekend)…it’s kind of like I’m in a boxing match and I should just stay down already because I’m just going to keep getting walloped if I stay in the fight.

I’m getting help. I’m going to a depression group to try to get back into the swing of self-care. Unfortunately even that is a bit depressing – during the first session I was singled out as having a reason to be ‘legitimately’ depressed and there were audible gasps when I admitted my kid has cancer. So yeah…my kid has cancer and that sucks and OF COURSE I’m depressed, right?

Except I can’t be! I need to work and keep up with the health insurance. I need to help Jack with his homework (it takes him extra effort to do the math portions) and administer medication and take care of my pets and various other chores. I can’t be depressed. I have to suck it up and get out of bed and get Jack to his appointments or school or to his dad on time. There is no time for depression! How dare it pay me a visit when I so obviously can’t entertain even a second of it!

I know I’m hard on myself. David tells me so. The doc I saw yesterday told me so. I know I’m depressed and instead of being nice to myself I sit there and tell myself that I shouldn’t be depressed – Jack is doing great! We have a house! We have jobs! We have a ton to be grateful for.

I need this depression to be over so I can get back to enjoying my life.

And I could use a few breaks here and there, too.

Still Swimming

Things are in motion and going pretty well. Our packing is coming along nicely, we bought a sofa and loveseat to be delivered on the day we move into the new house, and we’re  in the midst of moving all of our utility accounts over. That will all likely be finished this week.

Jack is hanging in there. He’s got some aches and pains but if you didn’t know him, you’d probably be surprised to hear that he is fighting cancer. I notice his thinner frame and knobbier knees, his dry skin, the shadows under his eyes, the shorter temper…but I’m his mom. I can’t help myself from tracking cancer symptoms, possible side effects, making note of his weight loss at the clinic…

But I’ve worn myself out and it’s becoming obvious to others. Aside from a recent incident where I forgot to include one of Jack’s medications in the bag that I gave to his dad when we had our exchange, I also – for the first time ever – started driving the car without having buckled Jack into his booster seat! We didn’t make it too far down the road before Jack panicked over his freedom in the backseat and I pulled over. Ugh, I hate that I’m letting things slip like that. My memory is even more useless than it was before any of this started. David is getting sick of me asking the same question over and over again…and I hardly know what day it is at any given time (although Monday still manages to slap me in the face – you just can’t forget it’s Monday…).

Clearly it’s time for that LOA. Nine days until that starts!

I’m thankful we have five months of Jack’s treatments behind us. There is so much less fear in me now. There is a lot less worry than there was in the beginning. I’m seeing that Jack is doing incredibly well under the circumstances, and that is reassuring!

The decreased levels of fear and constant worry have made room for chronic fatigue and depression. I don’t want to get out of bed in the morning. I don’t want to go to work. Going out of the house for something as simple as looking at a few couches takes all of my energy. I’ve suddenly turned into an introvert; having a conversation with someone outside of my immediate family or super close friends wipes me out. I suppose that’s because I feel so braindead that anytime someone asks me a question, I have an urge to reply, “My kid has cancer.” Total buzz kill, ya know.

At least we are getting our house. I’m looking forward to that. It’s one thing to hibernate, but to do it in a place you love makes it a lot better!