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The Definition Of Hope

The Definition of Hope

For more than the past year, I have been writing a book on hope. It’s been a daily struggle for me for quite a while now and I still haven’t mastered the art yet. I do know a couple of things though:

Hope is hard.

It is typically used as a wimpy sentiment that belongs on flowery pillows and peaceful ocean scenery get well cards, but real hope, when you really need it, is tough. Hope takes tears, pain, and takes a courage unlike anything else. True hope takes constant care and attending. As soon as you neglect whatever fuels your hope in your life, you’ll turn around and wonder why you feel so lost and alone.

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It’s 2:36 AM.

sleepy chibi jen
I have binged on chocolate.

I have emptied my junk folder carefully (I have a set the highest spam filter on my blog email that catches everything, even normal emails, thanks to some spammers list I got on).

I have read a couple of Buzzfeed posts.

But most of all, I archived all my cancer support group pages (archiving is when you are still apart of the group but don’t see it in your feed), and even turned off following one of my favorite cancer organizations. And I’m actually proud of myself for doing it.

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productivity

My projects make me happy

Sing soft kitty to me

 

My last post was a bit…dramatic. I wanted to let you all know that I really am okay. I had my weekend to wallow, feel hopeless, and cry over my son. Now life keeps moving forward so I decided my next post should be what I am happy about…

I recently got to see my amazing Aussie friend TWICE in two weeks. It’s pretty amazing. We’v been friend’s for years and seen each other once. So getting to see her again, and so much was just fun.

In other good news, a extremely rough draft of the book “When Your Child Has Cancer” is finally finished! I started it in June but have put it down more often than working on it, so it has taken a bit of time. The draft has been given out to a child life specialist of a hospital and program coordinator of a child cancer organization for their feedback. Currently this book is part what to expect, advice for survival, our experience, how to make the best of it all, and encouragement. I think that will be more narrowed down when I figure out what is most needed for patients out there. The big picture is I’d like to do this very small book,  do a Kickstarter or GoFundMe campaign so I can get a real editor and professionally designed cover, as well, raise money to give print copies to hospitals and organizations for free, and throw it online for free too…

My biggest pet peeve when working non-profits is people who want to take over a field, resource, or whatever for the sake of their own power. They can’t provide anything unique, but don’t want to play nice with those who are doing something for whatever cause. They reinvent the wheel for the sake of ego, and take valuable resources away from organizations that already have momentum. I would be horrified if I did this. Hence why my first action is to get feedback from those who disseminate resources to make sure I am filling a need.productivity

Currently I am thinking it could be two type books (and kind of already is): The first is an “intro to resources” type book. The book is very small and brief, and at the end of every chapter can direct parents to other books and resources that they may be interested in.

The second would be a “what to expect” type book… a very brief overview of what to expect outside of the medical part of your child having cancer.

Another thought I had was taking out particular chapters, expanding on them, and making them their own small books… I’ve been particularly am talking about the fundraising for medical bills and how to survive the hospital chapters.

I feel good that it’s at least moving forward more… Also with the same two people I am discussing creating binders with forms for parents of kids to be able to track appointments, medications, surgeries, etc… Something already organized and ready to go. I’m really excited about this one, but right now it’s just an idea.

I love my projects. It keeps me moving forward.

High five

Baby boy playing with a toy

No Title For This Post

Baby boy playing with a toy

Authors note: This blog has been many things over time but most of all a personal expression of emotions. Yes, my journal. This post, I’ve been told is one of the saddest I have written in a while. It has no big inspiring point or fun sarcastic gif’s. Just a journal entry. Read accordingly. 

Want to crush a mom? Tell her that her child is very sick and she didn’t notice. Yep, that’s pretty much the way to ruin her day.

Baby Boy has had stomach issues since he started chemo at 7 weeks old… it comes with the territory of chemo. His last systemic chemotherapy treatment was a year ago. Consistently in this last year his major acid reflux has been a problem, keeping him up at night and in pain. We thought at one point he is getting better…but taking him off the medicine made it get bad enough he was having a hard time breathing. He is back on the meds, but at our appointment on Friday with an oncologist, it was brought up that chemo would not be doing this. Something else was wrong.

… ?

He had been tested for the cause, right?

No.

Why not?

The pediatrician and I thought it was the same thing you told us over a year ago…chemo messes with the stomach.

No.

Crap.

Infection was a word thrown out…. fantastic. So six months ago, we could have started figuring this all out  but because of whatever reason, the right questions were not asked, and my son had just continued to suffer.

This is not the first time… on Thanksgiving of 2013 we took BB into the ER because he had a fever. Turns out he had an infection that landed us in the hospital for 3 weeks. But before we got there, they told us something else: he had pneumonia.  He was on the middle to end of it…

We didn’t know. The chemo side effects masked the symptoms.

My son was sick for weeks with pneumonia and I didn’t know. It’s become a crippling fear of mine, and it’s happened again.

Now, something is wrong with my son’s stomach and I don’t know what….and could have done something sooner.

I am not beating myself up, nor do I even feel unforgivably guilty…it just hurts. It makes me nauseous and sad. It makes me want to curl up in bed and never leave and have a panic attack while I am there.

So much is unknown. New tumors. New treatments. New side affects…oh wait, those are not side effects — it’s something worse. What else do I not know? What else is coming?

What more is going to cause my beautiful son pain?

I mean, I don’t even want to get a dog because I am terrified to get emotionally attached and then the dog will die. I will have to make hard medical decisions, give shots, or do anything if the dog gets sick….I can’t handle just the thought, let alone actually going through with it. I am spent. My family would be a great family to love and care for a dog, but I can’t emotionally handle being responsible for another “person” right now.

Life isn’t easy. I get that. I can be strong and do what I need to do. I can look on the positive and truly find hope. In some ways it’s getting harder. I am ready to move on. I am sad, traumatized, and just want my son to be okay. I have fallen for the “he could be cancer free by…” too many times.

I just want his pain to stop.

Dare I say, I want my pain to stop.

I want this whole thing to just stop. I wish I could end this on a hopeful note, like I usually do, but that wouldn’t be honest to how I feel. I know we’ll be okay, better is to come, BB is doing pretty damn good considering, and all that good stuff.

Tomorrow is a new day…It will probably be better, but today I am just going to be sad.

That is all.

Life doesn't have to be perfect to be wonderful

What’s been on my mind

I’ve got a lot jumbling around up there, I need to talk it out…

  1. What will moving forward mean for me and my family… how will that look?

The Little Lady will start Kindergarten next year, which means we have to decide: private, public, fundamental public, Montessori, charter, Catholic, Christian, homeschooling, etc… Which seems like a lot of options but when you start going through them, you can start feeling stuck… Why do I have to make these decisions? Can’t I be done? I did the whole breastfeeding yes or no dilemma, that should be it.

Little lady sitting on the couch in a bathrobe

Okay, maybe not but the only way I’ve avoided an anxiety attack is by reminding myself that this is JUST Kindergarden. It doesn’t have to be forever. Yet still.. *bangs my head violently against my desk*

So we have that, and in general we are just getting to a place where we are starting to move forward again. Life kind of froze for a while there. We canceled on people more than we showed up. We didn’t talk to people more than we returned calls. We just were surviving… then we were healing (and still are)… now, it’s time to start moving forward.  Does that mean me working? Does that mean more intentional socializing? Does that mean getting back into ministry?

At the very least we are start looking at what that means for us… it’s kind of scary and exciting all at the same time.

the kids on trikes

  1. Being brave about my life.  

Certain seasons of life seems to have themes. My current theme… and seems like will be for a while is “Be Brave” and of course, it’s entirely appropriate.

I’ve struggled with being strong with this whole cancer thing this last month. It’s been a year and a half. We were told BB could be cancer free in December, he wasn’t. We went into 2015 with a new tumor and continuing this journey. I’m done with it all. I’ve lost my passion to get through this the most positive way possible, and now just want so badly for it all to be over. I need to suck it up, find my courage, and keep going. There is always more to learn and grow in a situation, I need to just keep going.

Life doesn't have to be perfect to be wonderful

I’m also thinking about taking some major leaps in terms of my insecurities and dreams. I’ve decided that this year I WILL self-publish at least two books (both currently in draft form). I’ve set goals, a timeline (which I’ve already failed to meet deadlines on), and am determined to do this even though every ounce of insecurity I’ve ever had tells me not too, that I am not good enough. On top of it, can I do this while being an attentive stay-at-home mommy with kids climbing on my head anytime I sit down at my desk?

Follow that dream

Lastly but most importantly, I need to be brave in my relationships. I need to have the courage to trust that new friends have good intentions. To trust that old friends will stick around. That things in my marriage won’t spin wildly out of control just because I don’t micromanage every area of our lives (this is not a reflection on my husband but my issues from previous relationships). I need to trust that my kids won’t end up too screwed up. Trust takes bravery. I need to trust, and to do that I need to be brave.

Now watch me hide behind my coffee cup…

  1. Making Love the Hospitality a year round project.

I started the Love the Hospital{ity} project because I saw a need in the hospital we were practically living at… I was going to make 10 toiletry kits myself and a friend of mine encouraged me to put the list of needs on Facebook. That I did, and I was overwhelmed with the donations and support I received. I decided to do the same thing again this year, Keaton Raphael Memorial asked to partner with me and currently the donations have been blown everyone away. Simple things like hot chocolate and soup for parents sitting in their child’s hospital room, day in and day out, makes a big difference.

The kids in the Keaton Raphael Memorial office

 

The kids being spoiled at the Keaton Raphael Memorial offices.

Now I am looking at how to make this a year-round project, how to help and empower people to put on their own drives, and have an organizational support system for them and this need. I love putting together programs. It’s fun for me. It’s exciting and I just love working out all the little details. So stay tuned, more on all that coming soon!

 


There is more on my mind but I have to make lunch for the kids… story of my life. I can’t even vent properly. Anywho, thanks for listening!

*Peace out*

I don't care how old I am, I'm going to the bouncy castle.

I Am A Moody Bouncy Castle

I don't care how old I am, I'm going to the bouncy castle.

I’m naturally a moody person. When I PMS, I P.M.S. If it wasn’t for a whole cost thing, my hair would be a different color and style each week. I can never just read one book at a time because it all depends on my mood what I want to read, so I usually have around 3-5 going which makes it impossible to finish a book in a reasonable amount of time. Having a child with cancer doesn’t seem to be helping that much…not the book reading part but the moody part.

Example, some days I’m trying to make everyone feel better by saying how much better he is doing… and the next I am pissed off because someone mistakenly thought Baby Boy was cancer free. Half the time I don’t know what side I’ll even fall on.

A couple months ago we thought there would be a good chance that BB would be cancer free… at the last EUA (exam under anestesia) we were wrong. It hurt more than most. I’m still a little sensitive. A organization we’ve had good relationship with, posted online this week that BB’s left eye was cancer free for three month with a big congrats attached. I was in the middle of a writer’s group when I saw it on Facebook (yes, I know I shouldn’t be online during such times), and had to leave the room I was so upset. The organization did nothing wrong. They didn’t get updates and got ahead of themselves, which is fine. I told them to publicize the heck out of us because we are so very greatful for them. I appreciate them trying to show their support and love. It still made me so angry.

Because it hurt. It’s a reminder that my baby has cancer… when I think about that all the anxiety and emotion, memory of hospital living, chemo sicknesses, and surgeries overwhelm me. People who I don’t talk to regularly often think he is cancer free. He is a running, climbing, happy baby boy so they assume he isn’t sick anymore.

The cancer actually doesn’t make him sick, the treatment does. He’s typically just doing lazer surgery and chryo therapy monthly, with the occasional inner-arterial chemotherapy (IAC). The IAC doesn’t have the overall body effects like systemic chemo did. So he has his hair, and he isn’t throwing up all the time. It’s great. But he is still fighting for his life. If left un-taken care of, he would die.

He still wakes up often crying in pain in the middle of the night. He now has nightmares after surgeries and procedures. He cries hysterically for over an hour after coming out of anesthesia. He has scars from his IV’s and the port that was in his chest. His stomach problems, that we thought were better, are actually worse than we thought. My daughter prays that God won’t take her brother from her, and wonders if everyone else around her will get cancer. This is my reality.

So many people have it worse, often I try to focus on helping them and not commiserating about our situation. I spend an abnormal amount of time convincing people BB is really going to be okay, because I don’t want them crying or being too emotional over him. We all need to have hope, stay positive, and move forward. But at the same time if people act like it’s all good in our hood, I flip out and get angry.

Oh and then there is the whole nap conversations. One comment of “Oh he naps for a long time! You are lucky” throws me in a whole rant of angry. Yes, he naps for an average of 3 hours on a normal good day. But he also is up a lot at night in pain, oh and yeah know still fighting all the negative affects of cancer and having gone through chemo the first seven months of his life. When he gets tired, he gets pale. He starts looking the same as when he was very sick… it’s really hard to see. The kid needs the sleep to be as okay as he is. Yes, I am lucky I guess, especially after Little Lady being a chronic non-sleeper, but at the same it just brings up a lot of emotions surrounding having a sick kid.

Moody.

I know it may seem “understandable” and I should let my emotions be. I do. However that doesn’t mean I want to be angry. I don’t like the feeling of my emotions flying and tumbling around like a toddler in a bouncy castle.

With my ever-growing mid-section I am even starting to look like a bouncy castle. Ugh…

That’s a whole different rant.

All I know is this whole thing has been a good test for me in two things:

1. Practicing instant forgiveness. People say a lot of dumb things, and not getting caught up in it is my new art style (I fail a lot, but one day I’ll have my own show, I just know it).

2. Controlling my reactions, and not just going off of instinctual emotions. Again, not good at it, but it’s given me ton’s of practice being all over the place emotionally and not taking everyone around me along for the ride.

So that’s good, I guess.

Balloon giraff

I Want To Do That

Balloon giraff

I am pretty sure I know nothing about anything. I don’t know anything about nothin? whatever it is, I don’t know it. Here is what I do know…

Puking is gross.

My kids sleeping through the night is good.

Serial killers are bad and marathoning Criminal Minds is not smart.

Bell peppers dipped in sour cream is really really good.

I don’t just sit down at the computer and see what blog post comes out anymore and that is sad.

And bad for my mental health.

My brother being home from college makes me beyond happy.

I miss him.

I am dumb and don’t get together with the friends who refresh and inspire me enough.

The other night was awesome Shelly (hi!).

December was so weird with the holidays I forgot what our regular schedule even contained.

I thought yesterday was Sunday, and today was Monday… I am so thankful today is Friday instead.

My teeth will all fall out if I don’t visit the dentist soon but I don’t know what scares me more the drilling or the bills.

My kids have slept through the night three times in the last three weeks.

Colds, teething, more colds, puking, and more teething sucks.

I want to become an author.

A person who writes books for a living.

Me.

I want to do that.

Really.

I really, really do.

Maybe I should try writing trashy romance novels. That’s what every bored stay-at-home mom is supposed to write, right?

I am getting tired now.

This is getting long.

I hate coming up with conclusions.