Confessions from some Real Moms of Baldkid County
Mom X:
So, the thing is...
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.
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.
Can SO relate! Have those same emotions and days. I've learned to tell my close friends simply, "it's a bad cancer day". If they want to know more, fine. If not, they've been warned.
ReplyDeleteI have also lost it a few times. The time I took her in for portraits before her hair fell out (I was a tad emotional). The mom's with babies next to me were arguing about whose baby had worst reflux and which one had seen the most specialists. When they told me would have to wait an extra hour to be seen, I lost it. Tears, frustration, and anger; just too much.
At times though I feel like it is our calling to bring our self-centered world a reality check. Suffering, of many kinds, in this world is VERY real. We are the privileged minority in America who walk on 'easy street' most days. If our family's suffering can help change that view, than we will continue to share. Some people need to be made uncomfortable for a change.
Ummmmmm. Ditto.
ReplyDeleteI need to find you on FB! STAT!
www.mindithemagnificent.com