I got to spend today with Sophie at work because her school had this weird Fall holiday thing on a Wednesday with little to no warning.  She was AWESOME.  She drew this incredible T-shirt on a little girl in a coloring book and one of my co-workers took one look at it and told her “You are your mother’s daughter.”  I couldn’t have been more proud if I tried.  I’m raising a little bad@$$ metal-head genius with sweet little girl tendencies.

I watched her draw as she talked about how she can draw as much as she wants.  How she can color with the best of them.  How she’s a true artist.  We have raised her to appreciate her skills, to recognize what she’s good at and what she enjoys doing and relish those things.  But talking to a different coworker today, Sophie just matter-of-factly stated she’ll never be able to drink alcohol.  Yesterday, she casually mentioned she can’t ever do contact sports.  It’s just facts to her, not a big thing, not even something she cares about, and I’m super happy that, most of the time, she just doesn’t care that the cancer has taken so much from her.   But the fact is the cancer left a path of destruction in her life… in our lives.  And in it’s aftermath, I find myself reflecting from the other side of the abyss.  The list is long of what she was robbed of, of what we were all robbed of.  And I thought I’d share.  Cause when a child gets cancer, the whole family has to fight that crap off.

1. She has scars on her chest and tummy.  Port insertion and removal.  Numerous biopsies.  Those scars will fade with time, but they will still be visible when she wears a swimsuit, and for a teenager girl, every blemish counts!
2. She has permanent liver damage and an enlarged spleen because of the liver damage.  She may still need a liver transplant, but we won’t know that until she hits puberty and her liver either keeps up with her growth or doesn’t.  It’s a waiting game.  3. She will never be able to participate in contact sports of any kind.  And you think “Okay, so she can’t do football.  Big deal.”  No.  Contact sports includes skateboarding, surfing, horseback riding, skating, soccer, dodgeball, anything with a ball, really, and biking is frowned upon.   Essentially she can safely do swimming and the running portion of track-and-field.  That’s it, folks.
4.  That enlarged spleen also keeps her from doing other things like EVER riding even a kiddy roller coaster, bumper cars, space camp, in fact most kinds of camp, so many things are cut out of her life.   Because of cancer.
5.  She can never drink alcohol.  Ever.  Because her liver is already so shot, it won’t take much to push it over that edge.  So college, she’ll have to be the DD.  She will never have that turning 21 birthday party with her friends.  Not that I’m a huge drinker.  It wasn’t that hard for me to give up all alcohol when I pinky swore with her that she and I would go forward through life without any alcohol.   But still… it’s an experience she’ll never have.
6.  Tylenol, Ibuprofen, benedryl, cough syrup, most medications that you take for granted?  She either CAN’T have, or we have to be SUPER careful with.  For the rest of her life.  So she’s got ingrained into her at the age of 7 to always tell people she’s got severe liver damage before she gets any meds.  Even if I’m standing right there.
7.  She has a large tummy.  Larger than it would normally be.  It’s not huge, and I don’t really see it, but tights and elastic waist pants can be uncomfortable, and God forbid you get regular jeans that are too tight. Poor kid…
8.  By the age of 1, she knew how to hold a puke bucket to puke into it.  She has always held her arm out for a needle after the age of 9 months.  She even stopped fighting her port accessing.  She was officially permanently conditioned to be a good patient.  And she lost the fear of those treatments that normal babies have.  To this day, she just acts like CT scans and endoscopies and being put under are no big deal.  Well to me, it IS a big deal, and I HATE that she’s just okay with all this crap.

And yet through this whole thing, she has approached it with a sort of matter-of-factness.  Just like “Yeah, okay, so this is my life.”  And shrugs.  I’m the one crying when she can’t do something.  I HATE that she can’t play basketball like I did.  I loved playing basketball.  I HATE that she can’t go roller skating.   I can’t STAND that she will always have to look at every medication she takes and wonder if it’s safe, when most people don’t even think about it.  I LOATH the fact that she’s just okay with all of this crap.  It shouldn’t be!  She should be PISSED!  She should stomp her foot and DEMAND to be able to go horseback riding.  I would!  But she’s okay.  She just moves on.  And it pisses me off.

And then there’s her daddy and I:

A dirty little secret you don’t hear about? If a couple has a child with chronic illness or loses a child to some illness, that couple is something like 5 x more likely to divorce or break up.  I’ll be honest.  Dan and I came close.  When Sophie got sick, he detached from the rest of the world, and was just quiet.  He says now that he thought he had to be strong for us, be “the man,” whatever the hell that means in whatever machismo land he was taught that bull$hi+, but yeah… that was his reaction, and I felt like he wasn’t even plugged in.  He never even let me see him cry.  He says he did cry, and I trust that he did.  She was his little girl and he worshiped her, but he hid his pain.   I, on the other hand, went into control and tie-it-down mode.  Everything had to be under my control because the one thing in the world that mattered most to me was up in the air, my little girl.   So there was screaming (me) and an echo (silence from the hubby, my screaming bouncing off the walls).  For nearly a year.  We saw someone about it.  Went through a ton of talking and stuff, and finally we pulled out of our funk and discussed our reactions to it.

We were lucky.  We are still together, and are closer and honestly are better parents and spouses than we were, but GOD, did I want him out of my life for a while there… and I’m sure he wanted the screaming banshee to just shut the hell up already.  I know so many parents in my support groups that didn’t make it.  So many that couldn’t take the anger and fear and sadness that comes with a sick baby.  There is very little in this world that could even come close to worse than fighting for your child’s life or losing that child.  It’s not a mark on the strength of the parents that sometimes a relationship just can’t handle the stress.  It happens, like cancer happens.  It’s not something that can be prevented.

Then there’s the personal issues.   Yet again, another dirty little secret you didn’t know about parents of children with chronic illnesses or parents who have lost a child.  We get PTSD.  As in Post-Traumatic-Stress-Disorder.  As in the stuff that our soldiers come home from war with.  It takes many forms.  It can be night terrors where you wake up screaming, thinking you are holding your baby as they are puking blood all over the floor.  It can be tears filling your eyes when you hear the sound of a helicopter because your baby was in one without you and you didn’t know if you’d see her again.  It can be flashbacks.  It can be extreme paranoia about every little thing… a rash, an ear ache, a cough… and you are suddenly calling the oncologist demanding a contrast CT TOMORROW.  It happens.  It’s not pretty.  you lose sleep over it and you end up with strained relationships from people who think you are hovering over your kid too much or are too paranoid or too OCD or whatever.

Depression is a REAL THING.  You have days you can’t see the light.  It weighs you down, a physical heavy thing on your chest and you wonder how to get out of bed.  You wonder why you are bothering with a shower.  People around you are all “she’s still here, she’s getting better you should be happy!”  but you can’t be happy yet.  It’s not something you control.  It’s an actual disease, people!  A disease you have caught from circumstances.  A deep black hole and you wonder if the light at the end of the tunnel is a train and not the way out.  It’s not a quiet, calm, dark place, either.  It’s full of whispered hatred and physical agony.  There is nothing okay about the places you, as the parent of a sick child, can find yourself.

There is help, though.  It can and does eventually get better.  There are people who will help you, places you can go to in order to talk, people who want to hear from you and who will give what you need, be it a shoulder to cry on, the number for a psychologist or psychiatrist, or whatever psych person you need.  Support groups with moms and dads just like you will give you REAL facts to cling to like a rope pulling you out of that black hole.

OH, and the people around you!!! You will hear that you are exaggerating things about your child’s illness, or that you are making stuff up for attention (no @$*%@ joke…that was said to me.  My kid had CANCER!).  The good news out of all of this is you find out who deserves to be around you and your child.  The good friends and family will be there.  And yes, I said family.  You will lose friends AND family over this.  You will have a crisis, and some family member will be the one to accuse you of seeking attention, or will try to blow something in their life up as if it’s ubber important (like they stubbed their toe or need to get a haircut or something) the week your daughter is having surgery to put her port in and start her chemo.  You will hear the WORST things from family because they think they will always be forgiven.  (Nope…  Not from me.  God and Jesus forgive.  I’m much too human to do that if you step on my kid or husband.  Sorry not sorry.  I don’t care if we share some genetic markers, I protect what is mine, and that kid and all that swirls around her is mine.)

BUT then there are those friends that will come and stay the weekend with you in the hospital to keep you sane and to snuggle with your baby because they love her and you so much.  There are those friends who come with PJs for you to wear because they know how crappy living in a hospital can be.  There are the friends who spend hours looking up medical journal studies to help you figure out what is going on with your daughter’s bilirubin numbers.  You find your gold, the friends you will go live with when you are both 90 and wearing purple hats and yelling at the kids to stay off the lawn.  And you make a new family out of those people that love you and threw that rope to you to pull you out of the blackness.  And you learn who to remove from your life permanently.

As for the PTSD, you eventually learn coping mechanisms, maybe.  Or you’ll just learn to hide it from the naysayers.  It doesn’t go away.  You learn who you can go to if you need to spout off and know you’re going to sound crazy.  That person who will talk you off the cliff.  The one you an say horrible things about your husband to, and she will say “mmmhmmmm… totally right.  Absolutely”  but then finish the conversation with “and you love him so much because he does X.”  You figure out it’s okay to sit in the car and let the tears fall when the helicopter at the hospital takes off and you are right next door picking up your baby from the daycare. And if you don’t have the coping mechanisms yet, THAT’S OKAY.  You figure a way through normal life eventually. It never goes away, but it can get better.

For those of you out there reading this and going through the same thing, it’s okay if you feel lost, if your relationship just can’t make it work, if you are in that deep dark hole, or if you just need someone to unload on.  It’s GREAT if you can pull yourself through it all, but sometimes you need someone outside for help.  You.Are.Not.Alone.  The illness or loss of a child is the worst thing that you will ever go through…  But what you are going through and how you respond to it is not how you measure your life worth.  You are important.  Your child or husband or parents or friends, WE need you.  You are still worth the effort of getting up and trying.  (And if you even THINK about self-harm, PLEASE call the suicide prevention hotline at 1 (800) 273-8255.  PLEASE.  Your family and friends love you.)

I used to think that everything balances out, the good with the bad.  Then Sophie’s cancer hit our family, and I realized, NOTHING could balance out the trauma that she went through.  NOTHING can make up for that hell on earth.  And we were lucky!  So many have lost so much more than contact sports and part of their sanity.  Life sucks.  It is NOT Good and Bad balanced.  It is years of just sludge and crap and doldrums and horror punctuated with moments of pure joy.  Those are the moments you live for.

At least until you can get to the point where Sophie is, where it’s okay that you don’t have all the good in your life and you are happy with what you do have.