Dr. Jekyll and Mommy Hyde

Confessions from some Real Moms of Baldkid County


Mom X:


So, the thing is...

I do feel bad for you most days when your kid is home with a cold.

I do feel bad for you most days when your ice maker quits working.

I do feel bad for you most days when you had to wait twenty minutes past your appointment time at the pediatrician.

But, you wanna know a secret?

No matter how many times I tell you that it's okay to complain in front of me about anything, there are sometimes when it's not. And I can't tell you when or why because I don't know when or why myself. Just some days, I don't think it's the end of the world that your kid has an ear infection.

I don't like this about myself. I don't want to make the rest of the world's problems pale in comparison to cancer and it's aftermath. And 95% of the time, I do a good job at it.

But that other 5% sneaks up on me when I least expect it. And not just to others, but to my own kids. My 5-year-old currently has pneumonia and MRSA, both of which are potentially life-threatening to a child on treatment. And I can't seem to feel like it's that big of a deal. I mean, she has plenty of white blood cells.

So, even though most days I do sympathize when your DVD player in the van quits working, there will be a day or two in there that I am plastering on a sympathetic face so thick that I feel like it's going to crack at any second as I'm thinking, "WOW, could your life get any worse?" I will be thinking, "I hope your pediatrician wasn't running behind because he was giving the news to another parent that their child has cancer or [insert major life-changing diagnosis here]."

I'll be thinking it, but I swear I won't say anything. I can't even imagine what someone who has lost their child is thinking about this very moment. But I'm sure not going to complain that my cancer survivor is trashing my house in front of them.

Don't be the skinny girl who complains about how she needs to lose weight in front of her chubby friends.






Mom Y




You are my friend/neighbor/acquaintance, and I need you to know something. There's a difference between having a crummy day, and having a crummy day and acting like it is the worse thing ever.


Talk about it all you want, call me, post it on facebook.  It's your life and I'm still your friend who cares.  But remember, please, who I am.  I am the mother of a pediatric cancer patient/survivor/angel and I am human.  I am not awesome everyday, I cannot always hold back the bile about what my child has suffered and that it is going to keep happening, every day, to more families.  Most of the time I can deal with it admirably, that's who I want to be, it's a choice.


But.


Well there are those days, when what my child has gone through, what his/her friends have gone through makes me really really angry.  On those days, if you want to say "My dad totally said I was a bad mother for how much tv the kids watch, it was awful.  Can anything worse happen to a parent?" you better prepared for an answer.  Because somehow you know me, and because you know me you know it can be worse, because you can be told your child is dying unless you cut them apart and poison them and pray it works.  


I hope I'll be tactful, because I am not saying what your father said isn't hard, and didn't hurt.  Just, stop yourself at "it was awful" and don't ask that question.  Because the next time you do I might do more than remind you about pediatric cancer, I might print you out pictures of children I knew who are dead, children who are suffering, I might lift my child's shirt and ask you to take a long look at worse.  


And then when I'm done with pediatric cancer, I may tell you what else I've earned in the trenches, that I know the answer to "can anything worse happen to me as a parent?"  The answer is always yes.   It is out there, I've seen it.  Diseases that make pediatric cancer look like a day trip to a pediatrician's office for a snuffly nose. 


There is worse than having to wait 4 weeks for an appointment, it's being told you can't leave the hospital, that your child might die if they don't intervene immediately, as in 14 hrs from telling you that you have to stay.


There is worse than a busy waiting room teaming with sick kids, it's a private hospital room on a unit where every kid there has a good chance of not seeing their next birthday, a unit that comes with a room just for children to die in.


There is worse than not being able to get out the house for a few days because of the flu, it's living in a sterile, confined, rule-laden bone marrow transplant room for 6 months when you were only supposed to be there for two.


There is worse than your child growing up and back sassing you for the hundredth time, it's watching your child slowly regress through every milestone to a tiny helpless being who can barely lift an arm let alone put it to their hip, it's watching that tortured little body draw their last breath in your arms.  


I am all too intimate with these realities, I can't block them from my head, and some days the knowledge itself crushes me.  I don't want you to have to live with them, I wouldn't wish that on you.  But I do ask you to remember they exist, to check yourself, to remember gratitude.






Mom Z




And when you say things to me without following through with the thought first, I will forgive you, but I need you to know what really happens inside my head. And it's not like I walk around all sparky, there are trigger factors. And those factors could be a future post.
 

What's that you just said?  "I don't know how you do it, you must be such a strong person" Ummmm, yeh. I got no choice but do it, remember? My child didn't go down to the oncology clinic and sign up for the war, it was a draft. And the whole family was sucked in. No, I am not a strong person for watching my children go though hell, because the diagnosed child is not the only child that suffers, I am crushed when I hear a whimper or a cry and it brings me back to a memory of that child being poked or held down or just feeling crummy. No, I am not stronger for having my eyes forced to watch so many children suffer from disease in clinics and by meeting other parents of children battling something, fighting for another day on this earth with their family, no matter what they go through every day. No, I am not a stronger person for living among the fear that the Omnipotus is lurking, waiting to attach it's prongs into my child again.

 "Let me just say, you must be a better person for going though that"  And let me say that the further you get away from the chemo, the more frightening it is to not feel that warm comfortable blanket, "walk away from the light CarolAnn, it lies".  No, I didn't get through it, it isn't over yet. I am a mother that has a valid reason to fear for one of her children to be taken under deaths wing, again. If cutting your child in half, taking out a major rotten organ and giving you a schedule for months of weekly poisoning, giving you a very large binder explaining crazy-scary side effects of the chemotherapy drugs and tests to be preformed on your child until they reach young adulthood, and the promise that you will reach your max out of pocket for the first few years is making it through to the end, than I'm ready for the punch line. So please,  if you know me, and I say something to make one of your eyebrows raise, give me a break. Ask me if I'm alright. Make a joke. Or better yet, if I have offended you that bad, try to ask yourself if scan week is near, because that, I notice is a big stress trigger. Want to know another trigger? Me too, but they are invisible. They are like those little no-see-ums that make you wave your hands around your head like a crazy person until you just snap at what seems like the thin air.

And if I hear one more "I see the effects this is having on you" and then you turn your back on me, I'm going to start taking away some of your points.

"I knew you were different when I found out you were a cancer mom" Oh yeh? And how do you mean, different? You mean like the soldiers that return home and start to resume their daily activities and/or job and nothing feels quite right. You still drive the same car, go to the same restaurants, visit the same friends, but it all seems skewed. Things look, feel and are so different now, like you are living in a parallel universe. You have been altered against your will.

One of us editor moms emailed the others this post idea to ask what we thought.  Sometimes we do that, run things by each other, sometimes we just sort of mentally purge into a post and put it up without asking for feedback.

We all agreed this post needed to be out there.  We thought it was an important post to go along with the concept of "paper cuts still hurt" - the idea that my kid having cancer does not negate anything crummy happening in your life.  But well.  Our perspective is still different, tolerant, but different.  As our support network, we want you to know that, we care, but we would also really really love for you all to be able to realize how lucky we all are, you know without you having to have a bald kid of your own.  

Zitis attack! Meal Train fights back!

This here's a post both for friends and cancer families.

You know what's really nice to do for someone when their kid is going through treatment? Bringing over a home-cooked meal; it's pretty awesome. Whoever said the way to a man's heart is through his stomach hasn't eaten with me. Eat, eat, be merry. Burp and eat some more.

If you would like to organize meals for a family, let's start with the actual organizing. As of this moment, consider yourself freed from countless Reply All's. Spare your friends the agony of having to add their names to a list with dates only to get 14 emails simultaneously with 14 different people signed up for the same day. It's painful to check emails on these days when all you want to do is something helpful.

Get thee on over to Meal Train. With a quickness.

It takes a minute to register. Do not let this put you off. It is well worth your time.

For the organizer, you will get to set up a calendar and select the dates you want food to be brought to the recipient. My recommendation? Every other day. We were so lucky to have people bring us food every single day, but there's only so much space in a refrigerator. Fortunately, we have a large freezer and were able to save our leftovers. But not everyone has a large freezer. And most people bring a large enough meal that there are ample leftovers for the following night.

(I love leftovers. They are my favorite breakfast. Skip the Cheerios, pass the Tuna Helper.)

For the people participating in your meal train, you will be able to see what date everyone has selected and what dates are still available. No more reply all mishaps. What's the bestest is that you can see what everyone plans on bringing.

Disclaimer: I am not in any way ungrateful for the outpouring of casseroles we received. We loved each and every one of them.

But, damn. We got a lot of baked ziti.

And by a lot, I mean more specifically nineteen. This number does not include the baked rotini, baked spaghetti, stuffed shells, or lasagna. I am honored that we even have nineteen different people who would want to bring us dinner. It's just...nobody had any way of knowing how much baked ziti we were getting.

We really like Italian food. It was all yummy. But baked ziti only comes in one size: gigantic. And one baked ziti was enough to get us through at least three dinners. Nineteen baked zitis without a freezer will make you constipated.

And cancer parents, if you do happen to get a lot of baked pasta, keep some jars of pasta sauce and mozzarella on hand. Sometimes the freezer will make baked ziti kinda wonky if you leave it in there a little longer than you should, but extra sauce and cheese makes all ziti equal.

Soooo...take a moment to read what others are bringing when you consider what meal to prepare. Just sayin'.

Another cool thing about Meal Train is that you can see both the favorite meals of the recipient as well as the dislikes and allergies. So if the family doesn't care for tube-shaped meat products, you can feel confident in your decision to not bring over hot dogs.

No worries about getting lost to the family's house. You can find the address as well as a map in the side-bar of the site. And not only will you know what time to drop off the food, the family will know what time to expect you, since the organizer gets to input the preferred drop-off time.

Meal Train will email you when it's your turn to start cooking. So no excuses about signing up to bring someone a meal and forgetting about it. It can really suck to have multiple hungry preschoolers crying for food when you get home from a day at the hospital and you're just not sure when to call it and defrost the ziti.

I swear, I am not getting paid by Meal Train to write this. I just really dig me some Meal Train.

There's even an option to enter "Special Instructions." Maybe something cool, like, Knock three times on the bathroom window or Wear a trench coat with a red rose on the lapel. Or just, Please don't ring the doorbell, my kid is sleeping off some chemo.

People like to bring food. We all like to eat food. We all love it that you are taking the time to pamper us with your secret family recipes. (We all get sick of hospital food, except maybe the extra special Ninja sushi rolls from the Duke cafeteria, but that's another post entirely.)

A friend of mine says she saved her maternity pants and turned them into "Thanksgiving pants." We should all be so lucky to be able to break out the Thanksgiving pants when the comfort food rolls in. Let the emotional eating commence!