Living in Backward Land

Living with a kid with a chronic illness like cancer is like living in an alternate universe.

As much as my common sense knows there is no sure-fire way to prevent anything, it’s still a bit galling to have been a natural birthing, extended breastfeeding, mostly-organic-feeding parent and yet STILL end up here. There was absolutely NOTHING to indicate Jack was at risk to get Leukemia. Hell, I even gave him Vitamin K orally after birth because I was paranoid about the larger dose in the injection (there was a study done a long ass time ago that shows a 2-fold correlation for Leukemia specifically after receiving the Vitamin K shot within the first week of life; there have been many studies since and the results have been mixed). None of Jack’s relatives have had Leukemia as far back as we can tell. He doesn’t have Down Syndrome or any other chromosomal abnormalities (they checked his chromosomes after his diagnosis). He hasn’t been exposed to radiation (he still hasn’t been to the dentist, you guys! and he was born in hippie country!). I didn’t have excess ultrasounds (two, I believe, the whole pregnancy), and he’d only had one x-ray before his diagnosis – back when he was 6 months old because he contracted RSV. He’s always been a hearty kid.

I did work in a hospital while pregnant with Jack, but NOT on the medical floors.

So yeah, one of the things I’ve had to wrestle with since hearing the L-word was WHY US?! I’m sure every family dealing with illness in any form struggles with this question but it feels extra shitty when you’ve done all you could to avoid illness.

In addition to that, so many of the ‘rules’ I used to follow in caring for Jack have been thrown out the window. As many of you know, we were a pretty “natural” living family – breastfeeding, cloth diapering, later introduction of solids, etc. Now? We are more likely to feed Jack processed and canned foods, junk food, and fast food. Jack’s phosphorous levels have been low quite a few times in the last six months – we were advised to get more canned and preservative-heavy foods. His sodium levels dipped – SALT BABY, YEAH! He started taking a steroid and his cravings were impossible to keep up with – we just had to feed him anything we could because he was so hungry he cried. The docs said that the more he ate, the better – putting on weight would be good early on because not only was he down a few pounds when we discovered the Leukemia, but he’d lose weight again during the more intense phases. Anything we could do ahead of time to preserve his weight would be good.

So, my kid who was breastfeed for over 2 years, who loves fruits and vegetables and always preferred milk and water over juice…has since eaten ungodly amounts of foods I had previously restricted – deep fried foods (i.e. fast food a couple times a week), fatty desserts (how about a milkshake??), high-sodium items like pickles, hot dogs, and Top Ramen. I’m now more than happy to hand him cookies or cupcakes for breakfast, but damn if he will eat them! The chemo has nearly destroyed his sweet tooth. I *wish* he would drink the juice the hospital offers him after his spinal taps (since he can’t eat 12 hours before them)…

When it’s not some sort of food that under normal circumstances I’d offer a whole lot less, we have situations where he wants bizarre things for breakfast – today he had edamame and salami! I got some Breakfast Essentials (fka: Instant Breakfast) into him, too. [Sidenote: It took some convincing a month or so ago to get Jack to drink 'chocolate milk' for breakfast since we'd been so successful in defining chocolate as a dessert previously!] I can’t tell you how many times I’ve encouraged him to eat a protein bar.

Diet aside, the dude wears sweat pants and sweatshirts in summer. Going outside isn’t exactly encouraged anymore – not only is his skin more sensitive to the sun, but he is prone to headaches and the light bothers his eyes…

It’s not just him, though. My therapist has encouraged me to drink more wine. There are many reasons for this, and believe me, my therapist isn’t wrong (can you say frequent close encounters with a narcissistic ex?) – but my diet already went to shit before I was told that drinking was a GOOD idea. I eat my feelings regularly these days.

I’m not so much writing this to rant or complain as much as I am to say that this is the thing that has led me to LET IT ALL GO. Control is an illusion, especially when parenting…remember that if your kid is happy (even if he IS fighting Leukemia) that smiles are fucking fantastic! And if you see a parent who is feeding her seemingly-healthy child a gigantic chocolate milkshake and a pound of fries with ketchup, please don’t judge. It may be the only thing that kid will eat today.

And even so, the parent may still be flogging themselves behind the scenes.

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Comments

  1. Awesome post!

  2. You are a GREAT mom. i know you do everything you can to help jack. and I STILL think all that breastfeeding/natural stuff you were doing is helping him long term to be healthy, even if it doesn’t feel that way now. you gave him a great foundation and YOU felt good about what you did, just like now, you feel good about what you’re doing to help your little guy eat ANYTHING he will be willing to eat. btw, they have all natural preservative free salami made by Applegate Farms I think it’s called. I eat it all the time. :)

  3. This is a great look at this aspect of illness/parenting. You’re doing a great job, as is obvious by Jack’s continued ass-kicking of leukemia. Keep doing what you’re doing.

  4. Giant hugs! It’s so tough to deal with the challenges without having to deal with judging eyes. Just keep yourself in the best spirits you can. Wine? Sounds like a good idea. Take care of yourself too. xo

  5. There are times when letting it all go is a good thing, and this is certainly one of them. There will be lots of time in the future to have him eat organic and get back to a normal diet. You are doing the best you can (and your best is pretty awesome – look at how well Jack is doing!), and that is all any parent can do.

  6. whatever the situation, whatever the reason, letting go of control is always so hard to do. I love you hard! Also, hugs to #jackonaut

  7. I wish I didn’t “get it” as much as I do. Love, hugs, and prayers that you keep doing the best you know how. :)

  8. (hugs) I think of you guys every morning, and send some good thoughts into the universe on your behalf

  9. HUGE hugs, like whoa.
    I think of you guys often–every time I see a notification in my email of Jack’s website update, even if I can’t read it for awhile, I think of you.
    Ahh, Narcissism. Always rough.
    One of my best friends has a child with autism, and she told me years ago, how that made her realize that you just couldn’t control life, hard as you might try.
    & Yeah, your foundation of awesome-natural-crunchy parenting no doubt gave him a great start. ;p
    *HUGS*

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