In my last blog I said I didn’t want to be negative.  I didn’t want to make a list of things NOT to say to the parents of chronically ill children.  And I still don’t.  But someone said something to me that has brought this one thing forward.  One thing that should NEVER be said to a parent of a chronically ill child.  Do NOT tell  a parent of a chronically ill child how to feel or judge their emotions.  That’s not okay.

As a parent, I go through ups and downs like any other parent.  I’m happy and I’m loved and I’m worried and I’m stressed and I get freaked out. And I have these emotions and reactions based off of what I have learned.  What I have seen and dealt with and been told to look for. It’s a part of parenting.   My child is this living, breathing, breakable part of my soul, just wandering around out there with other people, going to school, getting sick, having diseases. And I worry about her.

In an attempt to be a moderately tolerable parent, I make sure my children have access to the things and people and services they need in order to make sure they are cared for and protected sufficiently.  That they have the right access to education and activities to make them happy and healthy and well rounded adults. So we have a pediatrician, and know where the closest ER and Urgent Care are located. In the case of my oldest, a cancer survivor with permanent liver damage and ongoing portal hypertension, I make sure she has access to medical services that she may never use again, just in case.

Parents do this.  We get occupational therapists for walking issues, speech therapist for talking issues.  And if they get better, we still keep that physician’s contact information in case we need them again. That’s called responsibility.

Well, my oldest had a liver clinic appointment on Thursday for her liver damage because her platelets were lower than they’ve been since she was actively taking chemo.  A severe drop in platelets could mean a worsening of portal hypertension leading to varices leading to a GI bleed, and we can’t write off that possibility until an endoscopy is done (in May).  GI bleeds are scary and DO kill people, including children. Sophie’s had two.  I  have the right to be worried.

Well, at clinic we were given good news (her liver is stable, and though her numbers aren’t great and she might need surgical intervention in a year or two, she’s good for now so stable for now = YAY), we were given some surprising news.  Our hospital is no longer a liver transplant center because it lost it’s surgeon. The only Pediatric GI surgeon they had.  The one that puts in liver shunts and does splenectomies (the two surgical interventions they think she might eventually need) and stops massive GI bleeds.  That guy.  The surgeon we’d need if Sophie had another massive GI bleed. Because of her history, I’d be an idiot not to have access to one at all times.

So when I found this out, I naturally was worried.  Going over and over where we could go in an emergency, mapping out how far the closest appropriate surgeon is from us (5 hours), how long it takes to get there by helicopter (well over an hour), trying to figure out if we should move closer to appropriate care (I’ve managed to put this in a box and not think about it until after the endoscopy to rule out whether she’s even at risk for a bleed).

I’m saying all this as an intro to the conversation I had with a well meaning friend.

I am a normal person.  I smile and laugh a lot in my day.  Yes, I worry about my kids, probably more than the normal parent because I’ve been conditioned that way, but it’s not an every-second-thing.  And I talk a lot about my kids and about Sophie and yes her medical condition has been on the forefront of my mind this past month because of the platelets drop.

So when I was asked by a friend about how I was, I was honest.  First mistake.  I told him I was worried about the liver team being gone and not having access to a surgeon.  He did what people who are uncomfortable with my not always being happy do.  He criticized my emotions.  He told me I “always jump to worst case scenario.”  That I was “overreacting.”  That I was being “so negative”  Belittled me.  Made me feel about a couple of inches tall.   And I was suddenly furious.  Like “don’t talk to me anymore” furious.

Let’s be honest here, I am a realist with positive person tendencies.  I’m not perfect, and when I’m worried I tend to fixate on what I’m worried about until I have a solution.  That’s a normal person’s reaction to worry.

But to say that I am  negative person or that I’m “so negative” because I’m worried and trying to figure out a solution to a problem I was handed not 24 hours prior to the conversation…  That’s just not cool.

I have NEVER questioned that my daughter would beat cancer and liver failure.  I have always believed that my little girl, who had an 18% survival rate, would not just beat the cancer and survive related liver damage (which didn’t even factor into the survival rate) but also have a good life (which don’t get me started on the stats behind long term damage caused by cancer/liver disease), then I think I’m a pretty positive person most of the time.  Being told I was negative or always assume the worst… well the most insulting thing I have ever been called.  And I’m a lawyer, so you can imagine I’ve been called many things that would make a sailor’s ears bleed.

I NEVER questioned her surviving and taking over this world.   NEVER.  I have questioned the kind of parent I am, but every parent does that.  I tend to wear my heart on my sleeve, so I don’t HIDE what I am thinking like some people do, but I don’t believe for a second that most parents aren’t questioning themselves like me every day.  The probably just aren’t out there putting it in a blog or talking about it to friends.

He made me feel as if every breath I take in his presence is spent fretting non-stop about my “poor kid” to the detriment of normal conversation.   And he’s not the first one to do this.  This is very common for people to do.  To belittle my worries.   To listen to the concerns I have about a sick kid and downplay them to make the listener feel more comfortable.

Well it’s not okay.

I’ve noticed since Sophie got sick that often times people can’t handle being around someone who is worried or scared, especially if the person who is listening doesn’t understand WHY that person is worried. So they try to downplay your fear or pain.

These are the people that can disappear when it gets hard.  The ones I talked about in the Culling the Herd Post.  But sometimes those people can’t just be gone from your life.  They are in the carpool, they are other parents at your kid’s school, they work with you, and they can’t just disappear, even though they would if they could.

Sometimes it’s people that you think WOULD be there for you, but they just weren’t around at the time that it was hard and scary.  They don’t know what it as like when you went from having a happy baby doing better one day to a child in the hospital following a massive GI bleed and a helicopter ride to get emergency surgery to stop the bleeding the next day.  They just don’t understand that it can go from rainbows and sunshine to shit-storm in no time at all.  And they don’t get that you have to prepare for that.

I GET that people often don’t understand the situation.  BUT that does not make it okay for a person to belittle my worry or fear.  Or any parent’s worry or fear.

We are worried for a reason, and if you haven’t lived through what that parent has lived through with that child, you need to hold your tongue.   You can think “this person worries too much,” but don’t you DARE say it.  Don’t judge how a person parents.

It’s the emotional equivalent of a woman being told to smile because “it makes us pretty.”  I’m sorry if my frown makes you feel bad, but that’s on you, not me.

I’m sorry if my worry or freaking out or confusion or otherwise distraction is disconcerting to you or makes you uncomfortable because you don’t want to deal with anyone that’s not happy or smiling all the time.  But again, that’s on you.

Everyone goes through rough times.  Everyone has days or weeks or even months where they are stressed out or sad or scared.  And I listen when that happens.  And I care.  Because I do care.

I’m permitted the same thing without someone belittling how I feel.  Don’t tell me how I’m supposed to feel according to you.

So in short, if you have a friend who is dealing with a sick child or just normal childhood related worries, and she sometimes is unnerved or he is worried or scared, don’t judge that person.  Don’t say he worries too much.  Don’t say she always goes to the worst case scenario. That is the definition of lack of support.  That is how you make us feel like you don’t want to be there to support us when it does go bad.  That is how you get yourself removed from our phone list.  That is how you find out about the bad stuff happening after the fact.  That’s how you aren’t a part of our lives.

Instead, listen, tolerate the worry, and understand that it will go away.  It will get better.  And know that when some shit hits some fan in your life, we will, in turn, be there for you.

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