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Jack at Age Six

March 7, 2013 By

Jack doesn’t do favorites. He likes all the colors. He likes a variety of cookies and books and animals and activities.

He likes how he looks in black and red.

He doesn’t like obnoxious cartoons. He swears that the sole purpose of Johnny Test is to be annoying.

He prefers Mystery Incorporated and What’s New Scooby-Doo? over the original Scooby-Doo cartoons. He says the artwork looks better.

Jack thinks skateboards are the worst toys ever. He’s “not into” cars or trains.

He’s obsessed with aliens and monsters. He likes dragons a lot, too.

He totally hates it when someone talks about (or jokes about) bodily functions. It will ruin his day and any friendship.

He thinks spiders are cute.

Jack says cancer is “the most boring thing ever.” He doesn’t want to talk about it.

He won’t wear jeans or tank tops. He doesn’t like pants with buttons. He likes knit hats.

He doesn’t drink juice – only water and milk and sometimes Vitamin Water. Oh and he hates carbonation!

Playing in dirt is not his idea of a good time. Sticky things are even worse.

Despite his parents’ love of board games, he’s not that into them. And he’s only now liking coloring – at least if he’s coloring dragons. He did seem to inherit a love of crafts, though.

Jack can read really well. Recently he’s read some 60-page books. We read three books every night before bed – one from school that he reads and two chapter books that I read to him.

Plush animals are probably the number one toy for Jack. He has a ton of them (most are cats or monsters). Several sleep with him at night. When we are choosing the order of books to read at bedtime, he usually selects a plush to make the choice for him.

Our (mostly alive) cat Wicket also sleeps with him.

Jack draws and draws and draws. He’s been drawing since he was 2 years old and was handed a magnedoodle. We have boxes of his drawings and I don’t know what the heck to do with them all! He even draws on his schoolwork!

He’s awesome and I love him to pieces (even when he’s acting like a little jerk).

Filed Under: Babyman, Family, Growing Up Tagged With: , , , , , , , 4 Comments

Almost A Year Later

January 3, 2013 By

This whole cancer journey started about a year ago now. I can hardly believe it. I think Jack started getting sick before we realized – it was harder to get him to school, to get him to do homework and participate in PE, and then a couple of days after Christmas he got sick. Suddenly he spiked a fever and was miserable. He threw up, which is rare. His cousin was here from Maryland and tackled whatever bug it was with no problem! But it seemed to hit Jack like a ton of bricks, which was unusual for him.

A little over a week later, he still seemed to be off. He was tired, he was achy – sometimes writhing on the couch in pain, and I noticed he was having dexterity problems when putting Legos together – something he’d been doing since he was two! We thought (hoped) it was anemia or even just growing pains, but on January 7th, 2012, it was confirmed that Jack had Leukemia.

I look back now and I can’t even believe that I held up in those first days. I was terrified. I had NO experience with cancer, no idea what to expect. I took ativan to deal with my panic attacks. I drank coffee constantly – the warm cup within my grip somehow comforting and centering. I worried and worried and worried. Just a week before I had been talking to my friend Becky and had said, “I would die if anything happened to Jack.” Those words haunted me.

I kept thinking – Jack is so good, so sweet, such a happy, creative, magical little boy. He shouldn’t have to go through this! What if it took away his spark? I was well aware of how lucky I was to have Jack in my life – he made my life infinitely better – and then I worried he would be taken away. He was TOO good. I was TOO lucky. It would all be snatched from me. Having such awesomeness in my life couldn’t last…

It was unreal. It felt like I was living in a nightmare. I hoped it was just a long, intricate nightmare. I hoped the doctors had made a mistake, that they were being overly cautious, that they had switched Jack’s blood sample with someone else’s by mistake or something. It even occurred to me at one point in my terrified, exhausted haze that maybe Jack’s pretending to be an alien wasn’t just his imagination! Maybe he had alien blood and those weren’t cancer cells! (Yeah, can you tell I needed sleep?)

It didn’t help AT ALL that Jack’s namesake – his grandpa Jack – had died of cancer. It was Melanoma and this was Leukemia, but still. How fair is THAT? My heart hurt for Jack’s dad’s family members.

Most of the year is still a blur to me. I’ve seen people count the number of hospital visits, the number of various treatments and procedures, the number of pills even! (Okay I just went and counted what Kaiser has in their website for past visit info – there were roughly 35 visits [usually 2-3 appointments each visit] in 2012. Twelve of those included lumbar punctures and/or spinal taps.) Parents will track dates that new meds are given, ANC counts, side effects of every treatment…I did that for maybe two months. At some point I realized that all of the info was Greek to me and I’d let the doctors and my gut tell me the rest. Thankfully, it worked out.

At first we had a “Beads of Courage” necklace, as well, but after nearly filling it up after just that week in the hospital, we abandoned it. Some patients love these religiously but it didn’t feel that inspiring to us – it felt more burdensome and Jack had so little interest in anything that reminded him of his cancer once we left the hospital.

Things are pretty routine now and a lot about Jack’s life is fairly normal. He takes a lot more pills than most kids, he gets weekly dressing changes, and he can’t play contact sports. He often doesn’t feel 100% but what kid does? Before cancer, there were colds every few weeks or so – at least there are fewer of those now!

I think the largest impact – and it’s large, indeed! – of a chronic, life-threatening illness like cancer is the constant reminder and worry. Even if everything goes right, things can still go wrong and there is no preparing. Even if the kid can participate in most normal life activities, we parents need to assess every situation anew and sort out any possible threats to our child’s health. There is no safe spot, no time when you know nothing can happen – you don’t even trust yourself most of the time but you trust others even less.

Even while he’s sleeping – especially, sometimes! – there is worry. There is worry that one of the fifty bajillion blood tests will come back with odd results (and there is worry when they DO come back with odd results and you have no idea what it means or the doctor says everything is fine but then why do the numbers look different??), and worry that the medication isn’t working well enough. There is worry over side effects (their presence or the lack!) or longterm issues, anxiety over the catheter site and whether it’s supposed to look like that and whether the tube will hold up all three and a half years, the niggling thought that you missed something in the the four times you swabbed the cap with alcohol or that one of these times you’ll forget to undo the clasp before trying to push Heparin and blow a hole in the tube…

And when there isn’t worry about my kid, there is worry about myself – my relationships, whether I’m talking about this all too much or not enough, my work performance, the fact that my credit card debt doesn’t seem to shrink, the lack of attention (and sometimes food) I’m giving my pets, the fact that I’ve spent so much energy worrying about so much of this stuff that I have so little left for something like a school shooting.

“I can’t worry about that,” I tell myself. I will break. Or maybe I already am broken? Shit, there’s another worry.

And, all things considered, Jack is doing great! So it feels like the worry is for nothing! But there isn’t a damned thing I can do about it. There is no way to take a break from all of this. I worry in my sleep.

I imagine that another year will go by and the worry will lessen. I’ll grow more accustomed to all of this, find new ways to adapt and cope. Maybe even one day the weight will be lifted completely! Then what will I do with myself?

I know this post is mostly about me and not so much to do with Jack and how he’s dealing with everything. There is not a whole lot I can say about his experience, to be honest. He refrains from talking about cancer for the most part. He has mentioned a few times that he wishes he didn’t have it and hopes I don’t get it, but mostly he goes about his days as if it doesn’t exist. Partly its because of his age – he really doesn’t have a concept of what COULD happen. He is mostly unaware of the worst case scenarios. And rather than anxiety, he seems to feel irritation depending on his desires at the time. If he is prevented from doing what he wants to do, he’ll become irritated about it instead of resentful or worry that he’ll never be able to do it, OR he’ll take the escapist route and make it into a story.

Jack handles a bit of chaos and disorder much better than he did a year ago, and seems more confident and willing to try new things. Part of that is aging, but part is likely the cancer experience. He was precocious before, but now he is frighteningly adult sometimes. He recently told me that a friend I had lost will live on in my plush ewok doll. He often tries to discipline himself at home and at school. He deals with anger and depression and fatigue, things I’d hoped he wouldn’t have to deal with for many years yet.

One thing I’m particularly proud of him for is his ability to assess how he is feeling and tell us whether he is up for certain activities. Sometimes he’s too tired to talk on the phone, sometimes he’s tired but wants to try anyway. Self-awareness is a good skill to have and it seems like he is developing it at a fairly young age.

All things considered, we are much the same as we were a year ago, albeit somewhat less carefree and a lot more appreciative of the little things. In some ways we are stronger (our pain thresholds are higher!) and in other ways we are weaker (it takes less to disturb our routine and sense of security). Best of all, we have our little family and hope for the future.

Filed Under: Cancer, Cancer Mom, Family, Illness, Milestones Tagged With: , , , , , , , , , 9 Comments

Save Your Money, Save The World

November 14, 2012 By

Last week I attended a luncheon hosted by my local electric/gas company PG&E and Opower, thanks to Mom Central. The purpose of the event was to share information on how to conserve energy and save money. As a new and, frankly, flat broke home owner, I was very interested in the topic. I need all the money savings I can get and I live in California – home of the rolling blackouts – so if I can avoid those, all the better!

So, here’s the deal with PG&E and Opower. PG&E is the utility company for the majority of California and they have enlisted the help of Opower, a software company, to employ an energy management system that will help engage and encourage customers to conserve energy. PG&E’s revenue is no longer based on how much electricity people use; instead there are regulations in place that state they must develop energy savings programs in order to receive profits. This is a huge win for the environment as it makes everyone more aware of conserving precious resources and a win for consumers because it will save money and keep the power on longer.

A fact that really struck me was that since 2008 Opower has saved enough electricity to take a city the size of Oakland off the grid for an entire year. They’ve done this by harnessing the power of our peers because research has shown that the best way to get people to cut back on their energy use is to educate them about what their neighbors are doing. It’s easy not to think about how much you use on a daily basis and live in La La Land thinking you’re doing plenty for the environment, but if you get a report that shows that you are an energy hog compared to your neighbors? Well, damn, that makes an impact! No one wants to be the asshole neighbor – particularly when they find out they’re being put in a higher rate tier and paying more money because of it.

For my fellow PG&E customers, there are some awesome things in store on the PG&E website. The first is already available – if you log into your account online you can run various reports on your energy consumption and get tailored tips on what your household can do to lower your consumption and save money. It’s super easy to find out about rebates and other incentives you qualify for with this interface, as well. Anybody need some evidence to show their spouse that the old piece of crap refrigerator that clicks all day long needs to be replaced? This is your chance – you can probably even qualify for cash back.

My favorite graph is the one that shows you how much electricity you are using at different times of day – I figure you can catch someone stealing your internets at noon on a Tuesday if you pay attention – “Hm, what’s that curious spike in the middle of the day when no one is home?” You might also be able to detect a malfunctioning appliance before it shuts down completely on you.

Many customers are now receiving printed reports along with their paper bills that show what their consumption is right alongside their neighbors’. A lot of the houses on our block are the same size and have a lot of the same features inside – so if I find out I’m using more electricity than most of my neighbors, I can then go and figure out what they are doing that I’m not! Maybe it really is time to replace those windows.

Even more fun is the social apps Opower has developed. For instance, they’ve partnered with Facebook in order to implement an app that allows you to see how you stack up with your friends as far as energy consumption goes. Nothing like a little bit of friendly competition to inspire environmental conscience, right?

I’ve jumped right into using the online tools. Our energy usage is pretty good so far and our bills are manageable, but I’m hoping we can fine tune what we do around the house and make the most of every dollar. (I know my husband is hoping this gets me to turn off more lights around the house. But I NEED LIGHT!) PG&E has shown that those customers who simply log in to the site to review their account and energy usage save 23% more on gas than other customers. One of the tools to assist with this is their energy alert system, which triggers an email, phone call, or text message when you are about to go into the next (more expensive) rate tier. If there are only a few days left in the billing cycle, maybe you can bundle up a bit more and take shorter showers until your next cycle begins and save a bit of cash! I know I would use that cash for a latte…

Opower is partnering with utility companies all over the country (and the world!), so keep an eye out. Here is a list of where they are now so that you can take advantage of these awesome tools:

  • AEP Ohio (OH)
  • Arizona Public Service (AZ)
  • Burbank Water and Power (CA)
  • Commonwealth Edison (IL)
  • Connexus Energy (MN)
  • Constellation / Baltimore Gas & Electric (MD)
  • Southern Company / Gulf Power (FL)
  • National Grid (MA, NY)
  • Pacific Gas & Electric (CA)
  • PPL Electric Utilities (PA)
  • San Diego Gas & Electric (CA)
  • Xcel Energy (MN, CO)

Have you heard of these tools before? Are you using them? If not, I hope you all will all join me in using these tools so that we can start saving money AND the environment.

***

I wrote this review while participating in a campaign by Mom Central Consulting on behalf of PG&E and Opower. I attended an informational luncheon and received a promotional item to thank me for my participation.

Filed Under: Domesticating, Family, Reviews 2 Comments

Mental Illness In The Family

September 28, 2012 By

I filed a crime tip report on my brother today. At about 8:00am. What a way to start the morning, eh?

Back in January when Jack was diagnosed with cancer, my brother took a distinct interest. He started emailing me every day. Then several times a day when I didn’t answer. He sent me articles about cancer, “tips” about how feeding kids hot dogs could cause cancer, and then he contacted some ‘homeopathic healers’ on my behalf. I asked him to stop. He responded by sending more. So then I blocked him on Facebook.

After that, he posted to my Facebook wall by using my mother’s account (he borrowed her computer) and also sent me a message from her phone. Each time I informed my mother and asked that she not let him borrow her stuff! And asked her to please get him some help. I live over an hour away, have a kid with cancer to take care of, and do not have the medical history records that she does.

No luck. Actually my mom thinks maybe my brother was misdiagnosed as Schizoaffective…that maybe he just has depression. And that my pulling away from him is making him behave this way.

Ok, Mom.

My mom did call the police on my brother at one point because he was talking about slitting her boyfriend’s throat…she had been advised by his therapist to do that in order to create a record of my brother’s behavior. My grandmother (they live together) assured the police that my brother just needed to take his meds and he’d be fine. He wasn’t arrested at all.

Around March or so he got to Jack’s CaringBridge and posted the following message in the Guestbook:

“You’re really shitty parents and don’t know how to take care of kids so they get sick and get cancer and your treatment sucks.”

I secured the CaringBridge site and blocked him from that. I told my mother not to give my brother any of my contact information. I was done with being stalked and harassed, especially after finding out he’d been trolling a friend’s website and emailing my family members to see if THEY could see my Facebook. He didn’t understand why he couldn’t send me messages anymore.

A couple of months later I was speaking with my mom on the phone and she let me know that my grandmother had been sleeping with a knife because she was afraid of my brother’s behavior. When I asked if my mom had taken my brother to a psychiatric hospital yet, she said yes and that he’d been turned away because he didn’t want to be admitted and “they were full.” I spoke to my therapist, who then called Elder Care on my grandmother’s behalf.

Unfortunately nothing resulted from the house visit by Elder Care – my grandmother doesn’t want to leave the house (she has legit reasons). I encouraged my mother to keep trying the local psychiatric hospitals – to INSIST that they take my brother in. He needs specialized care and my mother is not equipped to give it to him. My mother has been dealing with a lot of health problems, though, and has not gotten anywhere with getting help for my brother.

This morning I got an email from my sister. She had seen on my brother’s Facebook wall that he was threatening to kill our cousin. His exact words were:

“If I see him I will fucking kill him I want to beat him so badly I fucking hate that shitty guy.”

There were two posts related to my cousin, and then a third discussing bullying:

“I hate those bullied people. I can’t stand them. I support everyone in hurting them. I will support the bullies to be extra viscious to those annoying bullied people. Get those bullied people to kill themselves.”

There was a lot more than this, but I’m sure you get the point.

My brother is not well. He is unpredictable and violent. He’s broken into a house, he’s destroyed property again and again, he hallucinates, and he’s told my son to go drink battery acid. He has not physically harmed a PERSON and he has not threatened to commit suicide, so police and the psychiatric hospitals will not take him. He is an adult (27 years old) and therefore in charge of his own care, and he feels that inpatient care is not for him. He’s fine – it’s everyone else’s problem.

I don’t know what to do. I love my brother. I miss the guy he can be when he’s not buried by his mental illness. I wish he could get help, but as time goes on it looks more and more like he will end up in jail. At this point I worry that he is going to be the next guy to shoot up a school or theater. There is no doubt in my mind that could happen. There was a time where I didn’t think he was capable of any crime, when I thought he harnessed so much potential for great things. Unfortunately that time has passed and now I just mourn the loss of a real brother.

So I filed a crime tip this morning. I encouraged my cousin to file a police report. I sent a follow up message to my mother, via cell phone, because she apparently didn’t get my sister’s e-mail. My fingers are crossed that during their visit together today to attend my great uncle’s memorial service, nothing goes awry.

My brother is sick. There seems to be nothing we can do to help him, and there seems to be nothing we can do to protect our family from him.

***

If you have any ideas at all about avenues we might not have tried, please, please share them.

Filed Under: Family, Issues Tagged With: , , , , 12 Comments

SOCS: Dreams Of My Father

August 19, 2012 By

Today’s topic is Dreams.

**********************

After my dad died, I had dreams about him constantly. I doubt a night went by that I didn’t dream of him. Mostly these dreams were simple – just letting me know he existed or giving me a look of love. We didn’t talk. These dreams were always vivid and in color. I don’t think I’ve ever dreamed in black and white.

Yesterday I was driving in the car with Jack. The Eagles came on the radio and I shouted, “Noooooo!” before quickly changing the station. Jack asked why I had reacted that way, so I told him the story of how my dad used to play Eagles songs on his guitar while sitting in the park. Ever since my dad died (back in 1991) I can’t listen to an Eagles song without wanting to throw up.

“These songs make me miss my dad.”

Telling Jack this brought back emotions that I haven’t felt for years. I finally made peace with my dad’s death around the time I got pregnant with Jack. This year in June, for probably the first time ever, I didn’t even think about the anniversary of his death. Still, with this one sentence, I felt his loss again.

It didn’t make me sad to access those feelings again, though. Instead, I was proud of myself for remembering him, for still feeling that connection, for being able to carry on and yet still be human.

I miss my dad, but I’m okay. I don’t need to dream about him anymore to know he loved me.

I still refuse to listen to The Eagles, though.

**********************

This was my 5 minute Stream of Consciousness Sunday post. It’s five minutes of your time and a brain dump. Want to try it? Here are the rules…

  • Set a timer and write for 5 minutes.
  • Write an intro to the post if you want but don’t edit the post. No proofreading or spellchecking. This is writing in the raw.
  • Publish it somewhere. Anywhere. The back door to your blog if you want. But make it accessible.
  • Add the Stream of Consciousness Sunday badge to your post.
  • Link up your post over at Jana’s place.
  • Visit your fellow bloggers and show some love.
Filed Under: About Me, Family, Stream of Consciousness Sunday Tagged With: , , , , , 5 Comments

To Have…Or Not To Have Another

August 17, 2012 By

We went back and forth for a long time – our entire relationship up to that point, really. I was still feeling shell-shocked from memories of PPD and a failed marriage, while David simply thought that no kid could ever top Jack. (Awww.) Could I go through the stress of a new baby again? Could I trust my partner to do his part after what had happened in my previous marriage?

It took until Jack was five years old for me to answer those questions.

We finally decided sometime late last year. We wanted to have another child and we would start trying sometime in 2012. We had gone through some ups and downs in our relationship but had settled in nicely and were working toward our goals. We felt secure in our love for one another and our desire to build our family. I thought that at least I’d be prepared if I got PPD again, and we decided that Jack was probably meant to be a big brother and would not feel slighted by an addition to the family. We would make sure he DIDN’T feel that way.

About a week into the new year, we were sent to the hospital with Jack and handed the diagnosis of Leukemia. I kid you not – just days before this I had been talking to my friend Becky about child loss (we were brainstorming for a resource page for Band Back Together) and I said, “I’d probably kill myself if something happened to Jack.” Jack is THE REASON I turned my life around back in 2008. Regardless of how far I’d come in rebuilding my life, how could I keep going if he wasn’t a part of it?

The conversation with Becky haunted me as soon as I knew there was something wrong with Jack’s health. I thought, “I did it again – I opened my big fat mouth! I’m never going to say a goddamned thing parenting-related again!!!” It had seemed I’d asked for it. I had tempted fate and now my boy was sick. Considering the hardships I’d been through in my life, I should have known better – don’t acknowledge the blessings out loud, lest they be taken away.

I wish I could say that the feeling that somehow I caused this went away, but it hasn’t. It’s a known issue with me – I blame myself for most things. Magical thinking at its finest!

Not long after the diagnosis, one of my (many) panicked thoughts was, “We should have a baby – that would keep me here if something were to happen to Jack.” I just knew that if we lost Jack, everyone around me would lose ME, too. I simply hadn’t been living before Jack was in my world, and how would I live without that sunshine in my life? Another child would ensure that I stayed rooted. I needed something to keep me rooted – something that told me that there was NO WAY I was allowed to give up. I probably don’t need to point out that I was feeling a clawing desperation and horror, and that was affecting my thinking at that point in time…

Sometime in the proceeding days, my thoughts shifted. There was NO WAY I could handle a baby while my firstborn was fighting the battle of his life! I could not take my attention away from Jack! I was going to be right by his side and make sure we beat this!!! Thankfully my husband and I had a heart-to-heart and he expressed his concern that I would throw myself so thoroughly into taking care of Jack that I would ignore myself, our marriage, our life.

David has an amazing ability to center me. I made the right decision there!

I don’t remember who in the oncology team said this – maybe it was more than one person – but I heard the message loud and clear: you can’t stop living because of this diagnosis. You can’t change your life plans – that will just frighten Jack more.

I couldn’t reconcile that message with my other concerns. It was clear to me that I couldn’t completely throw myself into the role of Jack’s savior. There was really very little I could do to help him fight this and losing myself in the process would be more detrimental to him than anything, not to mention I had a husband I’d made promises to – but this was my SON, my first-born, my lifeline! If he wasn’t okay, I wasn’t okay! There was no getting around that. I likely wouldn’t be here if Jack wasn’t here – how would I carry on if he was gone?

Understandably, thoughts of adding onto the family were put on the back burner. The stress and worry over Jack’s health weighed on me so heavily that I no longer slept peacefully and I could barely get up in the morning – I couldn’t see how I could handle a pregnancy or infant on top of all that. On top of that, it didn’t matter that Jack’s prognosis was fantastic – that it would be a shock if he didn’t lick this – we had already drawn the short straw. There was proof we had bad luck. How could we take the leap of faith necessary to have another child?

Jack is now six weeks from the maintenance phase – the phase where we are relatively “home free” and he can return to school. There is no reason to believe he won’t completely heal from this and never experience a recurrence.

So now I have time to return to thoughts of another child…and my worries have not faded. Having a second child feels like taking a risk. We are both now hyper aware of all that could go wrong. Maybe we should just call it good! No need to tempt fate!

But I still can’t let go of the thought of expanding our family. It doesn’t seem right to give up, to never again experience pregnancy or birth or those little developmental milestones. I can’t help but wonder what my genes mixed with David’s genes would create. Not to mention that as hard as parenthood is, having Jack in my life is absolutely worth it.

Before Jack’s cancer, I was sure we’d be trying to conceive this year and add to our family. Now, I’m not sure.

Unfortunately cancer affects life in many ways, and it has shaken us to the core.

Filed Under: Cancer, Cancer Mom, Family 18 Comments

Divorce and Empathy

August 1, 2012 By

My friend Becky is in the early stages of divorce, a situation that brings out a lot of empathy in me. It’s not only a divorce – it’s also a complete shift in her life; she is completely starting over from scratch (which is fairly typical with divorces). This, naturally, takes me back to four years ago when I did the same…

I had been married almost nine years to Joe when we called it quits. We’d been together since we were 16 and neither of us had ever lived on our own. We grew up together – and we outgrew one another. We had been trying to avoid the inevitable for years, doing everything we could think of to adjust to one another, including individual AND couples counseling. Divorce came up so often in our relationship that we had already decided “if we ever get divorced, that one is YOUR cat.” He regularly talked about women who would be “next in line” and I tried to escape with friends or travel as often as I could.

Not long after moving back from the isolated northern coast of California to the Bay Area and starting a new job, I started having a serious mental breakdown. I had an incident where I could not get out of bed – I felt entirely zapped of energy and I had to be guided to the car because I was so disoriented and dizzy. The stress had built up so much that my own willpower was no match for it.

I started therapy again and got some anti-depressants. In talking with my psychiatrist (who reminded me exactly of Dustin Hoffman’s character in Stranger Than Fiction), I realized I had some serious personal issues I needed to work on that just could not get resolved while I was in that relationship with Joe. I had to start from scratch if I was going to fix anything about myself. I had to separate completely from unhealthy patterns, behaviors, and people. I had been trying to live a life that just wasn’t me for too long and I was no longer able to stuff myself in that box.

The conversation about separating took about two minutes. Joe and I both new where we stood with one another and knew it’d be a relief to not be together anymore. Everything else aside, we were a bad match – nearly complete opposites when it came to goals, personality, and values. This was not difficult to see. The only reason our relationship had been ‘working’ was because I’d been suppressing so much of myself for so long, trying to mold myself into a good wife for Joe. I might have continued to do this if my own psyche hadn’t put a stop to it. Even Joe had told me, “You aren’t the person I fell in love with at 16.” He was right.

Almost all the difficulty in the separation came out of the reactions of family and friends (not everyone, mind you – we had support, as well). Someone made the comment that because Joe and I had been together so long, had seemed so comfortable in the way things were, that they had placed us in the category of “not breaking up ever.”

Reactions varied – some took sides (although we both maintained that it was a mutual decision) and others felt scared about their own relationships. People argued that we hadn’t tried hard enough, hadn’t done enough to save the relationship. As hard as my depressed and scattered brain tried to make sense of it all for others, I was not able to coherently explain that the relationship was a fraud – that I was a fraud – that I had buried myself for a decade. The relationship was an illusion and there were some fundamental problems with me (and Joe, as well) that needed to be fixed. Guessing at the people we would likely be once these issues were addressed, it was blatantly obvious we wouldn’t choose to be together (if even friends) once healthy.

We both grieved the end of the relationship and the major upheaval in our lives. Joe did so openly, as he is a very outgoing person. I, on the other hand, am more private – it’s only through writing that I am able to share most of what I’m thinking and feeling. My therapists have always had to PULL information from me.

Unfortunately, my lack of demonstrativeness was seen by others as coldness. I didn’t seem to be upset enough. I seemed to be carrying on just fine. (Meanwhile, I was taking bathroom breaks often to deal with my panic attacks in private. The idea that my personal life would affect things like work was appalling to me – I needed to work and I needed to take care of my child and I needed to start all over. I didn’t have time for grief.) A number of people were MAD at me – felt that my seeming indifference was aimed at Joe. The things that were said about me hurt deeply, especially since I was struggling with my long-ignored mental health in addition to this huge life change.

Some of the relationships I had before the split were never quite mended. I still haven’t yet figured out my place with my family-by-marriage. I was fully entrenched in that family for over a decade and loved them as my own. But somehow when Joe and I split, I lost my place with them. I still feel most conflicted about that.

I write all of this not because I want sympathy after the fact but because I would like to implore everyone out there to have empathy for those going through divorce – for BOTH people. Joe did horrible things to me during our marriage and I did horrible things to him, but in the end – even if those things had never occurred – we were wrong for one another and we both knew it. Neither of us wanted our child to grow up thinking that he should force himself to stay in a bad situation that was leaching him of happiness. We wanted to show him how to go out and seek what he needed, to find those things that feed his soul.

I’m proud of myself for walking away from the marriage. I’m proud of myself for sending the message to my son that love and happiness are important. I’m proud of deciding that *I* was important.

Divorce is hellish, no matter how amicable it is. Starting over SUCKS and everyone makes mistakes while doing it – they are, after all, making extremely important decisions about life while under a ton of stress. But sometimes, even as painful as it is, it’s the right thing to do. Without happiness, how is life worth living?

Filed Under: Divorce, Getting my groove back, Issues, Marriage Tagged With: , , , , , , , , , , , 12 Comments

Explaining Life As A Cancer Mom

July 6, 2012 By

I mostly handle Jack’s cancer pretty well. The day-to-day stuff is much easier than I ever thought it would be and I’m pretty good at keeping up with what needs to be done. The thing that does get to me, though, is the look on other people’s faces when I tell them details about Jack’s treatments.

I recently took a leave of absence from work. I needed it badly – my work was suffering – and I knew we were coming up on a difficult phase in Jack’s treatment, a phase where not only were the treatments much more frequent, but also given at home by us. I knew that if I didn’t take time away I was surely going to break.

Being able to focus on my family was wonderful. I got to spend time with my son without having to say, “No, honey, I can’t play right now because I need to work.” You can imagine the impact of this on Jack, as when I told him I was taking off work to be with him for a couple of weeks, he said, “That is the best news ever!” We had so much time to play, to talk, to run errands together, to just BE.

After those couple of weeks were over, I went back to work calm and pretty clear-headed. Within that first day, though, I started struggling again.

My co-workers are very compassionate and caring. Wonderful people! So upon my return, many stopped by my desk to check in on me. Each visit serves as a reminder of that ball of anxiety I try to pack away for a while. Every question asked takes me back to that first week that Jack was in the hospital, when we first learned he has cancer. Every reaction to my answers reminds me of how horrifying this all is. I feel all the emotions that I felt when we received Jack’s diagnosis all over again as I see the reactions of other people – shock, horror, fear, worry, pity. It doesn’t matter how far we’ve come since that hospital trip – it’s all fresh again in someone else’s eyes.

People are understandably curious about what we are living with day-to-day. How has our life changed? How are we coping? How long do we have to do this?

Unfortunately they are not prepared for the answers. We access a line directly into our son’s blood stream daily – there is no room for error with that. We have to be prepared at any moment for a meltdown over something as simple as inquiring if Jack has brushed his teeth that day – anything can set him off if he’s feeling cloudy-brained or achy or unsteady or just a little off. It’s a balancing act to enforce rules (because we still have to parent him) and letting him be (because he’s going through so much already). Even in the moments where we know it’s essential to enforce some sort of discipline, it can feel like we’re torturing the kid – kicking him while he’s down.

And how long will we have to do this? Well, the “simple” answer is two and a half years. That’s if everything stays on schedule – that timeline doesn’t account for delays or remissions (which hopefully won’t happen!). But cancer is not exactly predictable.

It’s hard to believe, I know. Two and a half years of treatment?! But isn’t the cancer gone?!

The cancer has to be prevented from coming back. Not only that, but Jack’s immune system has to be reprogrammed. And, yes, that’s two and a half years of chemo. Two and a half years of having a catheter in his chest. Two and a half years of mental space devoted to cancer…of watching for side effects and weighing every decision we make against what might be going on with Jack’s immune system.

Is this different than what any other parent has to go through? Yes and no. I think we all start off with a large amount of worry for our children upon their birth. Over time, though, most parents are lulled into a sense of security. We see how resilient kids are and how they aren’t so easily breakable. We wake up every morning with an idea that things will likely be okay, just as they have been for months or years. Much of parenting is learning that you can screw up and things will still be okay!

But once something has interrupted that – once something has stomped on that sense of security – it’s hard to get it back. A life-threatening condition plays into just about every insecurity there is about being a parent, especially the worry that even if we do everything right or well or directly to prevent bad things from happening, bad things can still happen.

This is not the type of message I am happy to be spreading to other parents, but this is my life now as a cancer mom.

Filed Under: Cancer, Cancer Mom, Family, Working Mamahood Tagged With: , , , , , , 2 Comments

Moving Right Along

May 31, 2012 By

I have a lot going on.

We’re moving in 2.5 weeks. We still have a ton of packing to do! We’re really excited, though. I think we’re all still holding our breath a tiny bit until we ACTUALLY move in. Still, David and I have been on the hunt for new furniture, so I suppose we’re fairly confident all will be well.

Jack’s in his most intense phase of treatment (although, thus far, has been doing super well and it hasn’t been very intense!). A few days before we move, we start chemo infusions AT HOME. I’ve opted to take a leave of absence from work during this time. The first few days of this phase had me checking on Jack at night and worrying about him dying while asleep. I had nightmares that *I* was getting chemo and feeling horrid and could only imagine how he felt. Thankfully Jack hasn’t appeared to be sick and planning my LOA from work has helped calm me. We can do this!

We’ve managed to get up to wine country twice in the last month. It’s been wonderful. This is the best little escape for us – it’s not far and we can get out of there without spending a ton of money. One of the trips was free, in fact, because of my job (I occasionally get wooed by venues that are hoping I’ll book events with them). These brief trips have been a welcome relief and refreshed us a bit. On Memorial Day David and I met his sister L and her husband. We haven’t seen them since we got married! It was wonderful to catch up and hang out without a real schedule.

As if all the activity above wasn’t enough, I’m heading to the Type A Conference in North Carolina at the end of June. I’m flying to Atlanta to hook up with my friend Jana and then we’re driving to Charlotte. I’m nervous about being away from Jack during that time, but think this will be good for me to get away and let his dad take care of him while I get a break. Still, I bought travel insurance in case I need to change my plans at the last minute due to a health issue!

That’s all I’ve got for now. How are you? Any questions? I know I’ve been MIA…what am I forgetting? (Probably most things!)

 

Filed Under: Cancer Mom, Domesticating, Family 1 Comment

Some Joy

May 18, 2012 By

Considering the last time I mentioned a house, we were going to wait to look for House #5, this may be surprising to hear, but we’re in escrow on House #6. Mmhmm.

Number 5 came and went and then came 6. This lovely place is down the street from what we’re calling Mold House. It’s also a million times more awesome and the BEST house we’ve seen (in about 60 total). We were more than a little surprised when our offer was accepted. We weren’t surprised at all when the inspection was fabulous. THEN…then the appraisal came back at a bizarrely low amount and the whole thing nearly fell apart with our financing. We challenged the appraisal and after waiting on pins and needles for three and a half days, we finally heard back – the appraisal was revised. The house was once again in our reach if the sellers could meet us half way on bridging the gap in financing. And they DID! Yay!

We’re not out of the woods yet. We need the bank to approve our new financing. But we’re damned close! We should know for sure that everything is a go next week. We assume nothing until then!

Amidst this house drama, Jack lost his first tooth – one on the bottom. For some reason this makes us absurdly happy. I guess because it’s a sign he’s growing up even while fighting cancer. He’s living! And he’s damned cute with a missing tooth. He has a slight lisp and has trouble with S sounds at the moment. It’s adorable.

I also had a wonderful Mother’s Day! David and Jack made me breakfast in bed and then we went out to have fondue for lunch. I loved the pampering. We had our celebration a bit early so that Jack could have fun with his dad the next weekend while David and I took off for Sonoma. I got an incentive trip through a contact at work – two nights in a resort hotel plus wine tasting, dinner, and brunch – all free. We sprung for massages, too. I felt like I got two Mother’s Days!

Life isn’t all bad right now. I’m glad I get some relief, even if it’s hard won!

Filed Under: Cancer Mom, Domesticating, Family Tagged With: , , , , , , , , , 2 Comments
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