Sophia Tempee was born with Langerhans Cell Histiocytosis ravaging her organs. She was 6 lbs 8 ounces, bouncing, beautiful, pink with no hair and HUGE dark eyes and no one had a clue, but she was sick.
From birth, she puked nearly everything up all the time. I doubled up the formula in her bottles to get her to gain any weight because she puked so much up, but even then, by 6 months she fell off the bottom of the growth chart. She couldn’t swallow solid foods until 18 months old. Her little tummy eventually became distended from her enlarged liver and spleen. We covered it with fluffy oversized clothes.When they finally got her diagnosed, they put her on prednisone, and her little cheeks puffed into steroids moon-face and her little body chubbed up. They put a port in under her skin, hidden by the same fluffy outfits that hid her distended tummy. Her bilirubin bounced between 2 and 5 (it’s supposed to be below 1… this is what makes you jaundice), so she was yellow, but not deeply yellow. so it looked more like a tan on her. She only lost her hair on the high dose chemo, and she was so little then that she just liked like a normal, chubby, bald baby. But she wasn’t… she was sick.
Langerhans Cell Histiocytosis is a cancer that causes histiocyte white blood cells to form whirls that clumped together in the major organs and skin and bone, causing tumors that slowly eat at the organ or bone or skin, and leave gaping holes or lesions behind. Sophie didn’t have it on her skin, except for the occasional, eczema looking stuff under her clothes. Hers was in her liver, spleen, GI tract, and pituitary gland, and you couldn’t see what it was doing as it actively ate her alive from the inside. But it was there. And it very nearly took her from us.
So often, some well meaning parent or teacher would suggest something for me to do with my baby or give unsolicited parenting advice, and I would stop them and say “I’m sorry, but she can’t.” The inevitable “Why?”would follow. And I would have to tell them.
“She has cancer.”
“She’s in liver failure.”
“She’s got weak bones.”
“Her spleen is enlarged, she can’t do that.”
It seems like every time I would tell some other mother or teacher or someone that thought they knew better, they would say “Well, she doesn’t look sick” or “She looks fine.”
I always felt the need to justify what I was saying. As if I had to defend my statement with facts and evidence because she wasn’t completely bald from the chemo or wasn’t grey and actively dying in front of them. My brain would say “Well yeah, her bilirubin is down, so she’s not as jaundiced as she has been, she just looks tan rather than sick, and she’s playing and acting happy because she’s never known what it feels like to feel good, so feeling bad is normal for her and she can smile through her normal. We only fed her the uber-expensive, sensitive, dairy-free, broken-down formula and only half a bottle an hour ago, so she only puked a little. And yes, her eyes are bright and she’s trying to talk and she’s engaged…
But she’s sick.
What did I actually hear when those words were spoken?
“You must be making it up.”
“It can’t be that bad, look at that happy baby.”
“Is the mom doing this for attention?”
“I don’t believe her, why would a mother lie about that?”
“Oh, another helicopter mom.” (I’ve actually had those words said to my face).
On those nights when I rocked her as she cried non-stop, and then she fell asleep against my chest, still sobbing softy in her sleep because she couldn’t stop puking from the chemo and none of the medication was taking the edge off, all I wanted was for her to not be sick. I would have killed to have been making it up or imagining it. I would have given every part of my body and soul to be lying or to just be a paranoid, overbearing mom. But I wasn’t. She was so very very sick.
I didn’t need my behavior to be justified. I didn’t need their approval or understanding, but the whole process would have been easier if I felt like I was believed. It’s not that I WANTED her to look sick. I should have been proud that she was doing so well, for a child that was not doing well, but it’s hard to be proud when you feel like you’re barely getting your child through the hell they are living in. I was proud of her fight. Her will. And her strong soul. But I wasn’t proud that she looked healthy, because I knew the truth.
It would have made me feel like I had support from these people if I was validated rather than judged. I would have made it through the long years of battle easier if I was treated by my peers as if my decision to not let Sophie do so many things for her own safety was warranted and not questioned.
VERY serious illnesses are often invisible to people who don’t spend time with the patient. Those mothers didn’t spend time with her. They didn’t change her diapers and see the blood. They didn’t feed her and catch the immediate vomit. They didn’t watch as her pale pink skin turned more and more tan without any exposure to the sun. They didn’t clean her port access or hold her while the chemo was flowing and she moaned from pain. They didn’t know.
They did know that a mother was holding her child in front of them and telling them that the child was sick. They knew that the child *looked* fine. But looks obviously are deceiving. And when faced with a sick child or a serious illness, most people don’t know how to respond, so they say the first thing that comes to mind… which sadly consists of words that invalidate the confession just laid bare. And some, rare few, will judge the mother for what they perceive is the truth, rather than what the mother says.
This still happens to me today, when I say I don’t want to take Sophie somewhere or that she can’t do something. I get called “helicopter mom,” as if it’s appropriate for any parent to sit in judgment of another parent (so long as there’s no abuse, of course). Parenting isn’t a competition. You aren’t going to be a better parent than I will, just like I won’t be a better parent than you will. We will do it differently, because we have different children, who happen to be completely different people with different wants and needs and concerns that we work around when making decisions. Sophie’s wants and needs happen to be a little more complicated physically than those of other children, but no less important. And my having those concerns and acting on them doesn’t make me less of a parent.
The words “She’s sick” hurt to say for a mother watching her child suffer. Admitting my child cannot participate in normal life hurts. It feels like you’ve taken your heart and laid it out in front of them just for them to shoot it . So don’t shoot it, even unintentionally. When you hear someone say “She’s sick” or “I’m sick” or “She can’t because of an illness” or any variation of those words, please know that saying the words “You look fine” or “she looks fine” just invalidates the heart they just bared to you. Take a breath and then ask them about it. Show interest, or if they can’t talk about it, give them a hug. Give support. Don’t tear down. Take them seriously. And don’t get on a high horse and judge their parenting.
And if you are sick or someone you love is sick, I’m sorry. I believe you. You are not exaggerating, lying, or a helicopter mom. You keep being you and fighting the good fight. And ignore those that try to invalidate your words. They don’t know any better. Or if they do, they don’t deserve your time. ❤